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Letters to Help Advance A Cure for Diabetes
 
We are starting a collection of letters that people have sent to politicians, regulators, foundations, civil servants, government mandarins, academic administrators, and anyone else who can help us achieve our goal.  Anybody wishing to write a letter should feel free to copy and paste any material that helps them get their message across in a clear and constructive manner.  If you have written letters and would like them to be part of this collection, please email your letter to me, either as an attachment or as a simple text file. By providing your letter in this way, you are granting copyright to anyone who wishes to use your material.


Current Directory of Letters:
Latest entries at bottom of directory...

   From Al Gordon to Allan Rock (Canadian Minister of Health) and associates, Ottawa, Canada
   From Robin Harrison to National Institutes of Health, Washington, DC (Sample letter for everyone to use)
   From Mark Davies to National Institutes of Health, Washington, DC
   From Major Charles Grenkow to Allan Rock (Canadian Minister of Health), Ottawa, Canada
   From Sue Huson to Jim Mulvihill (JDF President) # 1, New York
   From Sue Huson to Jim Mulvihill (JDF President) # 2, New York
   From Sue Huson to Emily Spitzer (JDF Chair of Research), New York
   From Sue Huson to Jim Mulvihill (JDF President) # 3, New York
   From Sue Huson to US Public Health Service Agency of the National Institutes of Health, Washington, DC
   From Sue Huson to Ann Landers
   From Deanna Gaston to Allan Rock (Canadian Minister of Health), Ottawa, Canada
   From Deanna Gaston to Andre La Prairie (Canadian Ministry of Health Policy Specialist), Ottawa, Canada
   From Deanna Gaston to Mrs. Bradshaw (Canadian Ministry of Health), Ottawa, Canada
   From Candace Chamberlain to Members of Parliament, Ottawa, Canada (Sample letters for everyone to use)
   From Sandy D. to Jim Mulvihill (JDF President), New York
   From Blake Tucker to The Honorable Lynn Woolsey, House of Representatives, Washington, DC
   From Teresa Faith McKay to National Institutes of Health, Washington, DC
   From Al Gordon to National Institutes of Health, Washington, DC
   From Melanie Richardson to National Institutes of Health, Washington, DC
   From Sue Huson to National Institutes of Health, Washington, DC
   From Therese Bujold to National Institutes of Health, Washington, DC
   From Bambi Nix to National Institutes of Health, Washington, DC
   From D. Dianne Terry to National Institutes of Health, Washington, DC
   From Ken Cunningham to Allan Rock (Canadian Minister of Health), Ottawa, Canada
   From Sandy D. to Congresswoman Elizabeth Furse, Washington, DC
   From Reverend Murray Heron to Allan Rock (Canadian Minister of Health), Ottawa, Canada
   From Laurie Ridgel to Dr. Harold Varmus, National Institutes of Health (NIH) Director, Washington, DC
   From Scott Spencer to Dr. Harold Varmus, National Institutes of Health (NIH) Director, Washington, DC
   From Mary E. DeMello to Dr. Harold Varmus, National Institutes of Health (NIH) Director, Washington, DC
   From Faith McKay to Dr. Harold Varmus, National Institutes of Health (NIH) Director, Washington, DC
   From Doug Short to Review Committee, National Institutes of Health (NIH), Washington, DC
   From Melanie Richardson to Glenn Nedwin, Novo Nordisk Pharmaceuticals, Inc., Princeton NJ
   From Sandra Donchess to The Honorable John Porter, US House of Representatives, Washington, DC
   From Mary DeMello to Dr. Phillip Gorden, Director NIDDK, Washington, DC
   From Sandra Donchess to the Diabetes Research Working Group, Washington, DC

March 12, 1998

The Honourable Allan Rock
Minister of Health
13th Floor, Brooke Claxton Bldg.
Tunney's Pasture, PL 0913A
Ottawa, Ontario K1A 0K9

Dear Minister Rock:

In 1922, Frederick Banting and Charles Best assured Canada a place in medical history through their discovery of insulin. Today, we may be on the verge of an even greater discovery -- a permanent cure for diabetes and all its devastating complications. Your ministry could play a critical role in assuring that Canada is on the forefront of this remarkable development.

Today, many believe that the only real hope for curing diabetes is the transplantation of living insulin-producing islets into people whose own islets have been destroyed by diabetes. For reasons of safety and availability, these islets will likely come from specially bred pigs. Just as many people with diabetes have used pig insulin for the past 77 years to survive, transplanted pig islets have the potential to restore normal blood sugar control and end the horrors of diabetes. Xenotransplantation, the use of animal tissue for the treatment of human disease, will likely be the means by which we finally cure diabetes.

Health Canada, in sponsoring the National Forum on Xenotransplantation, has taken an important first step in understanding the promise of this new medical technology. For the sake of hundreds of thousands of Canadians suffering from diabetes, it is essential that this initiative continue. I have enclosed information that demonstrates the safety of xenotransplantation, and clearly shows that we accept much greater risks every day in the delivery of normal medical care.

Canada must continue to be a leader in creating a regulatory environment in which our researchers can bring islet xenotransplantation to clinical reality. We can repeat the glory of Banting and Best, and end the unnecessary human suffering and fiscal waste caused by this terrible disease.

Thank you for this opportunity.

Yours very truly,

Alastair T. Gordon
President
The Islet Foundation
Email:  a.t.gordon@attglobal.net
 
Enclosed: · The Xenotransplantation Debate -- Science or Superstition? 
· The Xenotransplantation Debate Continues… 
· Dr. Jay Fishman -- Letter on Xenotransplantation 
· The Islet Foundation
/24.htm 
/32.htm 
/forum004/messages/2802.htm 
/index.htm


This letter and enclosures were also sent to:
 
Madame Michèle S. Jean 
Deputy Minister of Health 
0915B Brooke Claxton Bldg. 
Room 1526B 
Tunney's Pasture 
Ottawa, Ontario K1A 0K9 
Mr. Dann M. Michols 
Director General 
HEALTH CANADA 
Therapeutic Products Directorate (TPD) 
Health Protection Building 
Tunney's Pasture 
Ottawa, Ontario K1A 0L2
 Return to Index of Current Letters

IMMEDIATE ACTION ALERT, DEADLINE DATE: April 2,1998
Send letters and comment about NIH research priority-setting for hand-delivery to the public meeting of the Institute Of Medicine's NIH review committee
__________________________________________________
DATE OF ISSUE: March 24,1998

Diabetes Cure NOW!
2514 Wilbon Street
Durham, NC 27704-3045
-----
1-888-253-7144 (FAX & Voicemail)
curenow@pair.com

IMMEDIATE ACTION ALERT, DEADLINE DATE: April 2, 1998
Send letters and comment about NIH research priority-setting for hand-delivery to the public meeting of the Institute Of Medicine's NIH review committee
Please distribute widely to appropriate individuals and health forums no later than April 2, 1998.

SUMMARY

__________________________________________________
The NIH Research Priority-Setting Process Review:
On April 3rd, 1998, the Institute Of Medicine (IOM) will hold a public forum on the NIH research priority-setting process. The forum will be open for public comment.

The IOM has been asked by Congress and the National Institutes of Health (NIH) to study the policies and processes the NIH uses to make research funding decisions.

More specifically, Congress requested that the IOMassess:

Standard practice at the National Institute of Diabetes and Digestive and Kidney Disorders (NIDDK) has been that research projects are selected and grants determined with no formal vehicle for "public input" or feedback! Major diabetes organizations like the ADA and JDF do collaborate with the NIDDK, but we feel the interests of diabetics would be better served if a diabetes consumer liaison is established at the NIDDK, with representatives from a broader sampling of the diabetes community.
__________________________________________________
IMMEDIATE ACTION TO TAKE
Diabetics and concerned parties should immediately send their letters to Diabetes Cure NOW! for hand-delivery to the IOM review committee on April 3rd. Ask that a formal diabetes consumer liaison be established by the NIH for public input on research and funding decisions made for diabetics at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). If you have additional comments about past or present NIDDK research and funding decisions, include them too. __________________________________________________
SAMPLE LETTER
For best results, your letter should be brief (1-3 paragraphs). Make your feelings as clear as you can without being hostile. If you have the time, please write your own letter in your own words, rather than sending a copy of this sample letter. However, sending a copy of the sample letter is far better than taking no action! Feel free to rephrase your comments and criticisms of any research and funding examples included below.

NIH Research Priority Setting
Project identification number: HSPX-H-98-03-A
(Note: You must include the ID# above)

Dear Review Committee:

I urge this committee and the NIH to provide diabetes consumers a voice in the research decisions made for and about us at the NIDDK through a diabetes consumer liaison. In past years, the bulk of diabetes research and funding has been on items that do little to help those who actually suffer the disease. Diabetes consumers have no say in what is researched or funded, nor a formal vehicle for input and feedback. Diabetes has existed for centuries, but our only mark of progress has been the discovery of insulin 75 years ago! We couldn't live without injected insulin, but it's not a cure. Between $170-$300 million taxpayer dollars were spent by the NIH/NIDDK on the Diabetes Control and Complications Trials (DCCT) to inform us that keeping our blood glucose levels "normal" might lead to fewer complications. Since the study results were announced, diabetics have frequently been encouraged to maintain "tight control" while the documented 340% increase in life threatening hypoglycemia (low blood sugar) is disregarded and attributed to patient error. The fact that we are lacking the precise tools and proper metabolism to maintain euglycemia most often escapes consideration or is blatantly ignored.

Major diabetes research initiatives by the NIH/NIDDK, like the fully funded nationwide Diabetes Prevention Program for Type I & II diabetes, offers the 16 million current sufferers of diabetes little hope. One research entity is receiving more than $30 million in NIDDK sponsorship over a seven year period for diabetes prevention research, but according to a recent Request For Applications (RFA) issued by the NIDDK, a mere $5 million was allocated to islet research, with a cap of just $200,000 per researcher. Encapsulatated islet technology has demonstrated effective for maintaining long term euglycemia in humans (Soon-Shiong/VivoRx; Elliot, Diatranz), and offers great hope for a near-term cure for insulin-dependent diabetes. But the RFA's were a one time offering that expired within six months of being announced.

In September, 1997, the NIH sponsored the Research Opportunities and Challenges in Diabetes conference. The event was publicised briefly, but no means of contact nor method of registration was offered to diabetic consumers and the general public. The summary report was not made available on the NIDDK website until after a full six months had passed. There is no mention of the word "cure" in the entire 54 pages of the Final Report and Recommendations. The list of participants contained few (if any) private citizens, but the medical community, the two major diabetes organizations, and businesses that market products to diabetics were well represented. I appreciate the significant contributions that these groups make to diabetes research, but believe that it is wrong to assume that these interests fully represent the very large and diverse diabetic community. I strongly urge the creation of a consumer liaison between a broad sampling of individuals affected by diabetes and the NIH/NIDDK.

Sincerely,

Full Name Here
Address Here

***** Including a Full Name and Address is especially important for your letter to be taken seriously. Also, you must include the record number for this review at the top of the letter. It is- HSPX-H-98-03-A *****

For guides on legislative letter writing, see:

(Most of these pages describe how to write letters to congress, but the essentials still apply to this campaign)
_________________________________________________
MORE ACTION TO TAKE

The NIH Research Priority Setting review is projected to last for six months, from roughly March, 1998 through August, 1998. If you are not able to send your letters off to Cure NOW! for hand-delivery, please do visit the site and comment. Don't forget to include the review identification number (HSPX-H-98-03-A)!

_________________________________________________
ACTION ALERT BROUGHT TO YOU BY

Diabetes Cure NOW!
2514 Wilbon Street
Durham, NC 27704-3045
-----
1-888-253-7144 (FAX, Voicemail)
curenow@pair.com

Return to Index of Current Letters

March 25, 1998
To: Institute of Medicine
Re: NIH Research Priority Setting
Project identification number: HSPX-H-98-03-A

Dear Review Committee:

Three years ago my son Stephen was diagnosed with Type 1 (insulin-dependent) diabetes. Since Stephen's diagnosis, I and my family have been caught up in the struggle to live with this disease, and to deal with the fears of both the short-term difficulties (such as dealing with hypoglycemic reactions) and the awful long-term complications that are associated. When Stephen was first diagnosed, we put our faith (and our financial support) into the American Diabetes Association (ADA). While educating myself with the help of the Internet, I learned that the ADA, although it may do admirable work in educating people to many facets of diabetes, is not driven to search for a cure for Type 1 diabetes, despite it's many fund raisers that use "For The Cure" in their titles. We then shifted our support to the Juvenile Diabetes Foundation (JDF). But even the JDF, possibly due to it's process of peer review for allocating research funds, has been slow to investigate promising avenues towards a goal of maintaining long term euglycemia in humans such as encapsulated islet cell technology.

My understanding is that standard practice at the National Institute of Diabetes and Digestive and Kidney Disorders (NIDDK) has been that research projects are selected and grants determined with no formal vehicle for public input. Major diabetes organizations like the ADA and JDF do collaborate with the NIDDK, but because of the reasons stated above I feel the interests of diabetics would be better served if a diabetes consumer liaison is established at the NIDDK, with representatives from a broader sampling of the diabetes community.

I urge this committee and the NIH to provide diabetes consumers a voice in the research decisions made for and about us at the NIDDK through a diabetes consumer liaison. In past years, the bulk of diabetes research and funding has been on items that do little to help those who actually suffer the disease. Diabetes consumers have no say in what is researched or funded, nor a formal vehicle for input and feedback. Diabetes has existed for centuries, but our only mark of progress has been the discovery of insulin 75 years ago! As Mary Tyler Moore recently stated, "Insulin is not a cure, it is merely life support".

Major diabetes research initiatives by the NIH/NIDDK, like the fully funded nationwide Diabetes Prevention Program for Type I & II diabetes, offers the 16 million current sufferers of diabetes little hope. One research entity is receiving more than $30 million in NIDDK sponsorship over a seven year period for diabetes prevention research, but according to a recent Request For Applications (RFA) issued by the NIDDK, a mere $5 million was allocated to encapsulated islet cell research, with a cap of just $200,000 per researcher. Encapsulated islets offers great hope for a near-term cure for insulin-dependent diabetes, but the RFA's were a one time offering that expired within six months of being announced.

In September, 1997, the NIH sponsored the Research Opportunities and Challenges in Diabetes conference. The event was publicized briefly, but no means of contact nor method of registration was offered to diabetic consumers and the general public. The summary report was not made available on the NIDDK website until after a full six months had passed. There is no mention of the word "cure" in the entire 54 pages of the Final Report and Recommendations. The list of participants contained few (if any) private citizens, but the medical community, the two major diabetes organizations, and businesses that market products to diabetics were well represented. I appreciate the significant contributions that these groups make to diabetes research, but believe that it is wrong to assume that these interests fully represent the very large and diverse diabetic community. I strongly urge the creation of a consumer liaison between a broad sampling of individuals affected by diabetes and the NIH/NIDDK.

Sincerely,

Mark S. Davies
6 Rennie Dr.
Blackstone, MA 01504

mDavies@waters.com

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Hon. Allan Rock:

My name is Major Charles Grenkow and I am a Search And Rescue helicopter pilot in the Canadian Forces - Air Force, I have been in the CF for 17 1/2 years and have been a Type I diabetic for the past 10 years. I was the "first" type I pilot to go back flying legally in the world and have since not only professionally fulfilled my commitment to protect the people of Canada, (received the medal of bravery from the Governor General), but have worked in SAR related positions in both NDHQ Ottawa and Air Command HQ Wpg as A3 SAR.

I would like to a moment of your time and talk about the research of xenotransplantation of islet cells for diabetes and the hope that it gives to individuals like myself.

Sir, presently I inject myself twice a day with a mixture of Humilin NPH and R and monitor my blood glucose levels religiously to ensure that when I go flying I am not a threat/burden to my fellow crew members by going hypoglycemic. We have come a long way in the development of diabetic products and research over the past 30 years, I can still remember watching my mother boiling her glass syringes and large gauge needles on the family's kitchen stove. And the fact is, if it was not for the Pork and Beef derived insulins of the time my mother would have died while I was still a young lad and many more owe their lives to those initial animal insulin products. Now I have Biosynthetic insulin and disposable syringes with needles that are almost as fine as my hair, and monitors that can tell me in seconds where my blood sugars are so I can take action immediately avoiding lengthy trips to hospital labs etc.

But even with all these wonderful technological advances we still have diabetes, our lives are still governed by a disciplinary cycle of needles and monitoring. And even a well controlled diabetic like myself finds the sword of Damocles hanging over one's head when employment issues like "Universality of Service" come into play. Even though I am cleared to fly as a Search and Rescue pilot in the CF actions are being taken through a Career Review Board to release me because I can not be supposedly deployed for more than 30 days. This is rated on the shelf life of opened unrefridgerated insulin.

Now there is a chance to change all this through the islet cell encapsulation and transplantation project. Scientists have discovered that by encapsulating pig islets and transplanting them into diabetic animals, the animals' blood sugar counts return to normal levels and they no longer require injected insulin. This is the normality that ALL diabetics strive for...

Sir on behalf of the diabetics of our great country I ask that you not only give serious consideration to this potentially life saving form of therapy, but you champion the way to increase the funding towards the area of islet transplantation research.

Thank you for your time and consideration, "That others may Live".

Major Charles Grenkow MB CD
cgrenkow@sprint.ca

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Sue Huson
16 Locust Cr.
London, Ontario, N6E 2K2
Canada
Work Phone 519-452-8330
Home Phone 519-686-9429
Email shuson@lon.hookup.net
October 27, 1996

Dr. James Mulvihill
President & Chief Executive Officer
Juvenile Diabetes Foundation International
120 Wall Street
New York, NY 10005-4001

Dear Dr. Mulvihill:

     Please find enclosed the letter I wrote to Terry Jackson after attending the JDF Research Symposium in Toronto last Wednesday.  I hope you will take the time to read the letter and seriously consider what I have written.  More importantly, I hope you will take the time to do something constructive to bring Dr. Sun’s research to the point of human trials.

     Many of us who have lived with diabetes for decades do not have another 20 years to wait for a cure.  The symposium certainly took the time to point out in detail the devastating complications that await us.  I’m sure you must be able to understand my frustration, if only in part, knowing that two hours from my home there is a lab that has successfully cured diabetes in monkeys.  Yet, for reasons that are beyond my comprehension, the Juvenile Diabetes Foundation has not invested the money needed to insure that this research reaches the point of  human trials.

     I hope to hear in the near future that you have taken the steps necessary to bring hope into the lives of people with diabetes.

Sincerely,

Sue Huson

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Sue Huson
16 Locust Cr.
London, Ontario, N6E 2K2
Canada
Work Phone 519-452-8330
Home Phone 519-686-9429
Email shuson@lon.hookup.net
January 4, 1997.

Dr. James Mulvihill
President & Chief Executive Officer
Juvenile Diabetes Foundation International
120 Wall Street
New York, NY 10005-4001

Dear Dr. Mulvihill:

     I was very disappointed with your response to my letter.  The indifference you showed to my concerns was disheartening.

     First of all, Dr. Dosch has knowingly, and repeatedly, given erroneous information regarding present day cure research.  Your answer to me regarding this matter was, “Oh well . . .   You ask him about it.”  You are the International president of the Juvenile Diabetes Foundation.  He carries the title of JDF Canada Chair of Research.  How can you ignore such comments?  I would be interested in hearing what action you are planning on taking in light of his continued damaging statements.

     You mentioned the importance of peer evaluation of the science supporting the research programs. We already know how Dr. Dosch has incorrectly evaluated islet transplantation, even though there are at least two other facilities in the world, apart from Dr. Sun’s lab, that have had much success in this area.  Other “peers” have careers that depend entirely on diabetes not being cured.  Much of their research will not be needed once this disease and its complications cease to exist.  I do not understand why such people are the ones responsible for evaluating the soundness of the science involved in cure research or how they could ever give unbiased opinions on what projects should be funded.  I would appreciate it if you would explain to me why you believe the peer review process will deliver the outcome we are all seeking.  If it can’t, what changes are you going to put into place to create a process that will work?

     Finally, people who once had complete faith in the Canadian Diabetes Association and the Juvenile Diabetes Foundation are now looking to The Islet Foundation for information and hope.  Why?c So far, JDF has been comfortable simply waiting for researchers to come to it.  I believe the time has come for you to begin aggressively pursuing researchers, such as Dr. Elliot in New Zealand, and selling them on JDF’s ability to move their research into the world of serious clinical trials.  Too much precious time and money have been wasted.  It’s time JDF showed some results for all the money it has spent.
 
     I hope you will take the time to give serious thought to these issues and to respond to my concerns in a way that will allow real progress to be made in finding the cure for diabetes.
 
Sincerely,

Sue Huson

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Sue Huson
529 Forest Edge Rd.,
London, Ontario, N6J 3R4
Canada
Home Phone 519-474-1724
Email shuson@lon.hookup.net
 August 15, l997.

Emily Spitzer,
Chair of Research
Juvenile Diabetes Foundation International
120 Wall Street
New York, NY 10005-4001

Dear Ms. Spitzer:

    I have been following the diabetes cure research that is currently underway very closely and very carefully.  I am disappointed, after just now reading the JDFI research web page, to see that you are putting money into projects that are far behind what the leading researchers are presently doing.  There are two projects in particular that JDFI has to get behind if you truly want to be known as the people who bring us the cure.

     First of all, there was no mention at the site of Dr. Robert Elliot of New Zealand.  Dr. Elliot has successfully transplanted encapsulated pig islets into humans with wonderful results.  He now needs government approval to enlarge his human trials.  JDFI could be a major influence in bringing about the needed approval, if only they would stand behind such promising research both financially and with their political power.  Could you please let me know why major funding and support has not been given for this project?

    The other project is the private company in North Carolina, Encelle.  Recently, Dr. Mulvihill stated that JDFI could not become involved in Encelle because it was a private company.  Encelle has, however, received strong and positive endorsements from leading researchers in the field of islet transplantation.

     JDF has only ONE mission: To cure diabetes. In fact, millions of people have put their faith, hope and trust in you to do just that. You have a moral responsibility to make sure Encelle's work is brought to human trials. JDF knows who the big donors are. You need to say to them, "We recommend you take a look at Encelle, and consider investing your money there this year instead of giving to JDF. Your investment could go much farther towards finding a cure than a donation at this time to our organization. It is not important to us that we look like we are raising millions of dollars. It is only important to us that this dreadful disease is cured."
 
     Doing this would not be admitting defeat. It would be showing real leadership and true concern for the children you represent. That is what JDF should be all about.

     I am writing to you because I believe that with a mother’s heart, you truly do want this horrible disease cured.   May I suggest that, as Chair of Research, you take a trip to Encelle yourself.   Even though the Powers That Be at JDF may try and convince you that you do not have the knowledge or understanding to evaluate the progress at Encelle, you owe it to your daughter to make the visit.  How will you be able to explain to her that, although you had the opportunity to make a significant contribution towards allowing her to live a long and normal life, you chose not to?

     I would not spend the time writing this letter if I didn’t truly believe that you, and JDF, could have diabetes cured, if only you would refocus your funding, and put the money on the people that are way out ahead in the race.  Internal politics, peer review and close ties with drug companies are all obstacles to ending this disease.  I hope you are a woman with guts.  If you truly want your daughter freed from the bondage and complications of diabetes, you’re going to have to fight the decision makers at JDF to get it.
 
Sincerely,
 

Sue Huson

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Sue Huson
529 Forest Edge Road.
London, Ontario, N6J 3R4
Canada
Work Phone 519-452-8680
Home Phone 519-474-1724
Email suemike@execulink.com
October 24, 1997.

Dr. James Mulvihill
President & Chief Executive Officer
Juvenile Diabetes Foundation International
120 Wall Street
New York, NY 10005-4001

Dear Dr. Mulvihill:

    Please find enclosed the 24 signatures we gathered at the London Walk for a Cure.  Although the signatures are few, they represent 24 families who have put their trust in JDF to deliver a cure for someone they love.

     Keith and Stacey have mentioned that we should expect some exciting announcements from JDF in the near future.  In your letter to me, dated January 24, you state, “I believe JDFI will increase its commitment to applied research in the maintenance of eugylcemia... In this regard, you may be pleased to know that preliminary contacts have been made with a number of laboratories and private companies who have interest in these areas of research.”

     I sincerely hope that the upcoming announcements will involve major funding for the researchers doing promising work with islet transplantation, rather than the ones working to create the bio-electric and mechanical cures that you also referred to in your letter.  I speak for many people when I say that we want to see islet transplantation receive serious support and funding, so that we will know, once and for all, if it is going to work.

    On Wednesday, I attended a lecture at the Robarts Research Institute given by Dr. Terry Delovitch.  Dr. Delovitch is the Director of the Autoimmunity/Diabetes Group that received 4.9 million dollars last year from the JDF and the Medical Research Council.  He has spent the past year watching his NOD mice, looking at the disruption of balance between the lymphocytes that defend the islet cells and the killer lymphocytes that destroy them.  He has also been giving his pre-diabetic mice Interleukin-4, and says the incidence of diabetes is greatly reduced.  Unfortunately, his research does not hold out much hope for a cure in the near future, although he strongly believes one is achievable in the next 20 years.

      A couple of things disturbed me when I spoke with Dr. Delovitch following his lecture.  I have expressed to you previously my concern with the present peer review system.  Dr. Delovitch, who has received huge amounts of funding from JDF, told me that he sits on your Medical Review Council.  I find it hard to understand how a researcher who receives funding from JDF can be one of the people responsible for deciding who gets money and who doesn’t.  Obviously, he wouldn’t be reviewing  his own research, but he told me that being at a JDF function is like being at a family gathering.  Wouldn’t the Council be far more likely to fund researchers who are part of the big happy family, than those who are not?

     Dr. Delovitch also stated, in no uncertain terms, that he didn’t believe encapsulated pig islet transplantation was going to deliver a cure.  However, he did not give me any scientific explanation for why he felt this way.   You already know of the misinformation Dr. Dosch was giving people regarding islet transplantation.  Could these attitudes towards new therapies be part of the reason this very promising research has received so little attention to date from JDF?  Could it be that the family is happy funding its own members and not open to new, exciting ventures?  Islet transplantation may not fit Dr. Delovitch’s definition of a cure, but it still holds the very real possibility of stopping the endless injections, fluctuating blood sugars, daily blood testing and inevitable complications that are such a horrendous ordeal for millions of people world-wide.

     I hope your coming announcements will show that JDF has been able to move beyond any peer review biases that may have existed previously.  We’re all anxiously waiting to hear your news.  Many of us do not have another 20 years to wait.

Sincerely,

Sue Huson

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Sue Huson
529 Forest Edge Road
London, Ontario, N6J 3R4
Home Phone 474-1724
Email suemike@execulink.com
January 09, 1998.

U.S. Public Health Service Agencies,
Natcher Auditorium,
National Institutes of Health Campus,
Bethesda, Maryland.

To Whom It May Concern,

     I am very interested to see that you are holding a meeting concerning xenotransplantation. The CBER web site states that it is  hoped the meeting will serve as a forum for continued public comment in this research area.   I would like to add my comments regarding the promising research  area of xenotransplantation of islet cells.

    All people involved in health care issues, such as yourselves, are well aware of the devastation and destruction diabetes causes to those of us who suffer from the disease, as well the heartbreak and trauma it causes our families. There is no need for me to give you the sad statistics associated with disease, because you know them well.

     What has emerged as a shining light of hope for us, however, has been the promising research being done in islet cell encapsulation and transplantation.  Many researchers have shown much success transplanting pig islets into animals, and are hopefully getting very close to beginning clinical trials.  Part of the discussion at your meeting will be the risks of xenotransplantation.  I have lived with diabetes for 30 years. Continuing to live with this disease  appears to be a much greater risk than living with transplanted pig islets perfectly controlling my blood sugar levels.  From an ethical stand point, no one found it disturbing that, for years, we injected  animal insulin into our bodies, because, although it was not a cure,  it added many years to our lives.  Transplanted islets will succeed where injected insulin was not able to succeed, allowing us to live lives free from the life-shattering complications and the fluctuating sugar levels that so diminish our quality and length of life.
 
     As you can see from my address, I am a Canadian.  Canada is well known for the discovery of insulin by  Dr. Banting and Dr. Best.  It would be a proud moment in Canadian history if our scientists were to provide the next, greatly improved, step in diabetes treatment.  However, my life, and that of millions of others, is too precious for me to be picky as to what country gets the glory associated with perfecting this wonderful procedure.  Please keep your minds open as you discuss these matters.  Lives can only be saved when new, innovative therapies are given the chance they deserve.

Sincerely,

Sue Huson

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Dear Ann Landers,

     I have lived with diabetes for 30 years.  Your column today disturbed me greatly.  The mom with the daughter recently diagnosed with Type 1 diabetes stated, “...she will be able to live a perfectly normal life.”
 
     There is nothing at all normal about living with diabetes. Those of us with Type 1 diabetes, and many with Type 11, carefully monitor what we eat, deal with the intense emotions associated with high and low blood sugar levels, take blood from our fingers regularly to check our sugar levels and inject insulin into ourselves over and over again.  Diabetes is a physically and emotionally exhausting condition.
 
     The mom also stated that because of your column, her daughter has no organ damage.  Organ damage does not occur quickly.  It occurs over time. Almost no one escapes the eventual deterioration of major organs that the condition causes.  Yet, the medical community has convinced the public and people newly diagnosed with diabetes that living with the condition is “perfectly normal”.

     Because of this, and despite statistics that show diabetes among the top killer diseases in North America, almost no money is being put into cure research.  Millions of dollars are still going to study the disease and its complications. It is time our research dollars be redirected to labs that are getting close to finding a cure, rather than the labs that want to discover why our kidneys fail, or why our hearts stop beating.

     Diabetes has become such a huge business, both commercially and in the research world, that it is not a popular disease to have cured. Pressure needs to be put on the diabetes associations and the government to fund the best in cure research.  Information regarding promising cure research is available through  The Islet Foundation. (http://www.islet.org.)

     For millions of adults and children worldwide, diabetes needs to be cured now.

Sincerely,
Sue Huson
(519) 474-1724

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From: Deanna Gaston <dfgaston@geocities.com>
To: Rock.A@parl.gc.ca <Rock.A@parl.gc.ca>
Date: Monday, March 02, 1998 2:30 PM
Subject: Finding a CURE for Diabetes

March 10/96
65 Ashley Cres.
Moncton,NB
E1G 1R5

Dear Mr. Rock:

Diabetes is a serious condition that needs to be cured. One and a half million Canadians are estimated to have diabetes. One hundred and fifty thousand take daily insulin injections, as I do, to stay alive. Yet few of us escape the devastating complications caused by years of fluctuating blood sugar levels. Millions of dollars have been spent to fund treatment and diabetes management research, yet the complications continue at an alarming rate.

The number of people with diabetes is supposed to double in the next ten years. Can we afford eighteen billion dollars a year on health costs for diabetes? We can save nine billion yearly by curing the disease now.

I am well aware of the millions and millions of dollars spent on diabetes education, care, awareness promotion and research of the disease and its complications.

As an educated person with diabetes, I am diligent in taking my insulin, testing my blood sugar levels and watching what I eat.  As hard as I try, excellent control of blood sugar levels is impossible to achieve.  To successfully mimick what a normal healthy pancreas does is difficult, if not, near impossible. No amount of education, care or awareness is going to change the fact that my body is subject, each and every day, to the fluctuation in sugar levels that are so harmful to the body. The causes of the fluctuations can vary from stress to the flu.

Even when I consult my endocrinologist, whom I see on a regular basis, we find it difficult to account for every little thing that will cause the sugars to fluctate. The only thing that will stop this vicious circle and that will save the Canadian government health care costs related to diabetes is finding a cure.

Canada is known world-wide for the discovery of insulin by Drs. Banting and Best at the University of Toronto. Today, another researcher, Dr. Anthony Sun, works tirelessly at the same universtiy, hoping to perfect islet cell encapsulation and transplantation. His work holds great promise for those of us living with this life threatening condition. Yet his reaseach, as well as similar research being done at the University of Edmonton by Drs. Ray Rajotte and Greg Korbutt, is greatly underfunded.

Every researcher will tell you that more money is needed to research the disease, its cause and its complications. You need to take a bold step and move beyond this type of research. You need to say, "Enough basic research has been done. Let's now fund the brilliant Canadian minds that are going to change the course of diabetes history forever."

You can go down in history as the Minister of Health who had the courage to take a stand against the wasted dollars the Medical Research Council puts into useless diabetes research and demand they support cure research. I sincerely hope you choose to do so.

Sincerely,

Mrs. Deanna Gaston

Return to Index of Current Letters
From: Deanna Gaston
To: Andre_La_Prairie@hc-sc.gc.ca
Date: Monday, March 16, 1998 3:07 PM
Subject: Canadian policy on xenotransplantation

Dear Mr. LaPrairie:

I understand that you are involved in writing the Canadian policy on xenotransplantation. I would like to make some comments regarding the promising research area of xenotransplantation of islet cells for diabetes.

All people involved in health care issues are well aware of the devastation and destruction diabetes causes to those of us who suffer from the disease, as well as the heartbreak and trauma it causes our families. The sad statistics speak for themselves, as diabetes slowly but surely, destroys our kidneys, eyes, circulation and heart.

I suffer several complications from long term diabetes, but I have accomplished much and enjoyed life greatly in those 30 years of living with diabetes. I believe absolutely in the need to take as good care of oneself as one possibly can, without blaming yourself when you don't quite manage perfection.

Two years ago I had to give up teaching due to diabetes-related health problems,... and it broke my heart...I Ioved teaching. I was born and raised on the banks of the beautuful Miramichi River- a world famous Salmon fishing river in New Brunswick, Canada. Though I never fished, I loved to do the "river-run" in a canoe...another thing I have had to give up. There is a long list of activities which I can no longer do at age 47 and after 30 years of type one diabetes---golf, tennis, horse-back riding, karate, swimming.

As you can see, I lived a healthy, active lifestyle, despite having diabetes (though there were rough days, and tough weeks). However, my blood sugars were never very well controlled and of course, until the last ten years, I did not have a monitoring device. Diabetics were expected to keep themselves under control with one shot in the morning. For many (probably most), this did not work very well. The hardest part was that we were told that it was because we weren't trying hard enough!

The advancements that have been made in terms of home monitoring and multiple injections help diabetics live longer and will delay..perhaps... (though not eliminate) complications. But it is at a high price in quality of daily life.

What has emerged as a shining light of hope for us, however, has been the promising research being done in islet cell encapsulation and transplantation. Many researchers have shown much success transplanting pig islets into animals, and are hopefully getting very close to beginning human trials. I am asking you to do what you can to ensure that xenotransplantation is allowed to move forward, so that lives can be saved through this porcedure.

People are concerned that there may be risks associated with xenotransplantation. I have lived with diabetes for 30 years. Continuing to live with this disease is a much greater risk than living with transplanted pig islets perfectly controlling my blood sugar levels. From an ethical stand point, no one found it disturbing that, for years, we injected animal insulin into our bodies, because, although it was not a cure, it added many years to our lives. Transplanted islets will succeed where injected insulin was not able to succeed, allowing us to live lives free from the life-shattering complications and the fluctuating sugar levels that so diminish our quality and length of life. We know the risks of living with diabetes. The risks of transplanted pig islets appear to be significantly less.

Other than islet xenotransplantation, there is little hope on the horizon for curing diabetes. Although other research activities are underway, none has achieved the level of demonstrated potential and safety of this procedure.

In most cases of organ transplant, the recipient is required to take life-long immunosuppressant drugs to prevent rejection of the transplanted tissue. As a result of a weakened immune system, the recipient is much more prone to infections and to certain types of cancer. Many of the concerns expressed about xenotransplantation are based on the expectation that the recipient will be immunosuppressed, whereas this is not the case. Because islet xenotransplantation uses immunobarriers to protect the islets from rejection, the recipient retains a normal healthy immune system. Therefore, any later infections are as controllable as in the general population and no additional public health risk is created.

All progress entails some risk, and to avoid all risk is to kill progress. We know the risks of diabetes – blindness, kidney failure, heart disease, amputation, birth defects – as well as the staggering healthcare costs and productivity losses. Clinical trials of islet xenotransplantation are such a small and manageable risk compared to the horrible and near certain outcomes of this disease.

Sincerely,

Deanna the diabetic
Visit my new links page at the Diabetics Unite Homepage at: http://www.geocities.com/HotSprings/Spa/4750

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From: Deanna Gaston <dfgaston@geocities.com>
To: Bradshaw.c@parl.gc.ca <Bradshaw.c@parl.gc.ca>
Date: Monday, March 02, 1998 1:50 PM
Subject: Finding a CURE for diabetes

Dear Mrs. Bradshaw,

Although people with Type 1 diabetes take multiple daily injections, test their blood sugar levels 2 to 3 times a day and follow strict diets, many will still experience the devastating complications, such as loss of eye sight, kidney failure and heart failure, that diabetes brings on.

Millions of dollars are pumped into diabetes research each year. Those of us with diabetes have always assumed that a large percentage of it was going towards the search for a cure. Nothing could be further from the truth. In the 30 years that I have had diabetes, no new procedures have been developed through MRC funding that have made my life any easier. As my MP, I ask
you to demand that our money be put into cure research. Research to determine why our kidneys fail, why our hearts stop beating and what causes our limbs to need amputation are not improving our quality of life. It only provides salaries for those doctors doing the research. Cure the disease and we won't need to worry about such things.

We are at a time in history when exciting diabetes cure research is being done by Dr. Ray Rajotte, at the University of Alberta, and Dr. Anthony Sun, at the University of Toronto. Even without the benefit of the millions of dollars the MRC hands out, these scientists have discovered that by encapsulating pig islets and transplanting them into diabetic animals, the animals' blood sugar counts return to normal levels and they no longer require injected insulin. Because of the encapsulating methods used, anti-rejection drugs are not necessary. Government approval and funding are the only obstacles to moving this research into the realm of human trials.

I hope you take my concerns about research funding seriously, and do something to positively change the lives of those of us living with diabetes forever.
 
Sincerley,
Deanna Gaston
65 Ashley cres.
Moncton, NB
E1G 1R5

Return to Index of Current Letters

The Canadian Letter Writing Campaign
by
Candace Chamberlain

What we want people to do is send letters to your MPs regarding the issue of cure research. Also include with your letters how diabetes has affected you and your family. I've included a link below that will take you to a site that lists all of the MPs snail-mail addresses, e-mails and phone numbers. You'll also find a few sample letters on this page. Please feel free to use them as a base for your own personal story. Please DO NOT copy the letters verbatim as they will not tell YOUR personal story. The letters are only meant as a guideline for what could be included in your letter.

Many of the letters were borrowed with permission from the original authors. I want to thank everyone for their involvement and contributions. Without you, this page wouldn't exist.
 

Members of Parliament and their addresses


Sample Letter to Andre La Prairie

Any letter addressed to Andre LaPrairie should be sent by any one of the following ways:

Fax number: (613) 941-6458
E-mail: Andre_La_Prairie@hc-sc.gc.ca

CANADA POST:

Mr. Andre La Prairie
Policy Analyst - Blood, Tissues and Organs Project
Policy and Coordination Division
Therapeutic Products Directorate
Health Protection Branch, Health Canada
HPB Building, Room 23 Location Code 0702B3
Tunney's Pasture
Ottawa, Ontario
K1A Gl2

Please keep in mind that this is only a sample letter. It is very important that you write your own letter involving your own experiences and personal information.

Dear Mr. LaPrairie:

I understand that you are involved in writing the Canadian policy on xenotransplantation. I would like to make some comments regarding the promising research area of xenotransplantation of islet cells for diabetes.

All people involved in health care issues are well aware of the devastation and destruction diabetes causes to those of us who suffer from the disease, as well as the heartbreak and trauma it causes our families. The sad statistics speak for themselves, as diabetes slowly but surely, destroys our kidneys, eyes, circulation and heart.

What has emerged as a shining light of hope for us, however, has been the promising research being done in islet cell encapsulation and transplantation. Many researchers have shown much success transplanting pig islets into animals, and are hopefully getting very close to beginning human trials. I am asking you to do what you can to ensure that xenotransplantation is allowed to move forward, so that lives can be saved through this porcedure.

People are concerned that there may be risks associated with xenotransplantation. I have lived with diabetes for 22 years. Continuing to live with this disease is a much greater risk than living with transplanted pig islets perfectly controlling my blood sugar levels. From an ethical stand point, no one found it disturbing that, for years, we injected animal insulin into our bodies, because, although it was not a cure, it added many years to our lives. Transplanted islets will succeed where injected insulin was not able to succeed, allowing us to live lives free from the life-shattering complications and the fluctuating sugar levels that so diminish our quality and length of life. We know the risks of living with diabetes. The risks of transplanted pig islets appear to be significantly less.

Canada is well known for the discovery of insulin by Dr. Banting and Dr. Best. It would be a pround moment in Canadian history if our scientists were to provide the next, greatly improved, step in diabetes treatment. Please keep your mind open as you consider the issues related to xenotransplantation. Lives can only be saved when new, innovative therapies are given the chace they deserve.

Sincerely,
Joan Smith



Possible letter to a Member of Parliament

Here is an example of a letter that could go to an MP. Please use this letter as a guide and insert your own personal information as to how diabetes is affecting you and your family.

Dear Mr./Ms./Mrs. MP;

When diabetes is cured, it will be a life-changing event for tens of thousands of Canadian children and adults. Living with diabetes, however, is a life-shattering experience. Although people with Type 1 diabetes take multiple daily injections, test their blood sugar levels 2 to 3 times a day and follow strict diets, many will still experience the devastating complications, such as loss of eye sight, kidney failure and heart failure, that diabetes brings on.

The Canadian Diabetes Advisory Board states, "Diabetes is an important risk factor for early death and disability from cardiovascular disease...These data imply that great efforts are needed to assist persons with diabetes, and their health professionals, with measures that can reduce this increased risk."

It seems obvious that the best way to assist people with diabetes is to ensure that enough money is directed towards cure research so that this dreadful disease ceases to exist. Millions of dollars are pumped into diabetes research each year. Those of us with diabetes have always assumed that a large percentage of it was going towards the search for a cure. Nothing could be further from the truth. There has been little commitment from the Canadian government to see this disease cured.

The Medical Research council says on its web page: "The federal money invested in health science research comes from you, the Canadian taxpayer." As a Canadian taxpayer, I am not pleased with the way they have been spending my money. I, and thousands of others, deserve better. In the 30 years that I have had diabetes, no new procedures have been developed through MRC funding that have made my life any easier. As my MP, I ask you to demand that our money be put into cure research. Research to determine why our kidneys fail, why our hearts stop beating and what causes our limbs to need amputation are not improving our quality of life. It only provides salaries for those doctors doing the research. Cure the disease and we won't need to worry about such things.

We are at a time in history when exciting diabetes cure research is being done by Dr. Ray Rajotte, at the University of Alberta, and Dr. Anthony Sun, at the University of Toronto. Even without the benefit of the millions of dollars the MRC hands out, these scientists have discovered that by encapsulating pig islets and transplanting them into diabetic animals, the animals' blood sugar counts return to normal levels and they no longer require injected insulin. Becasue of the encapsulating methods used, anti-rejection drugs are not necessary. Government approval and funding are the only obstacles to moving this research into the realm of human trials.

I hope you take my concerns about research funding seriously, and do something to positively change the lives of those of us living with diabetes forever.

Sincerely,
J. Smith



Possible letter to Mr. Allan Rock

This is a letter that would be mailed in conjunction with the above letter to your local MP. Keep in mind that you will have to research who your local member of parliament is.

Dear Mr. Rock:

Please find enclosed a copy of the letter that I have just sent to Mr./Mrs./Ms. MP, my federal member of parliament. As it relates to the health of tens of thousands of Canadians, I hope you will read it carefully and take the steps necessary to rectify the problems that now exist regarding funding for diabetes cure research.

Diabetes is a serious condition that needs to be cured. One and a half million Canadians are estimated to have diabetes. One hundred and fifty thousand take daily insulin injections, as I do, to stay alive. Yet few of us escape the devastating complications caused by years of fluctuating blood sugar levels. Millions of dollars have been spent to fund treatment and diabetes management research, yet the complications continue at an alarming rate.

The Canadian government must take an active role in ending this disease. As our Minister of Health, you can make bold changes in the way research grants are handed out. Stop the waste. Forget the studies. The number of people with diabetes is supposed to double in the next ten years. Can we afford eighteen billion dollars a year on health costs for diabetes? We can save nine billion yearly by curing the disease now.

You can go down in history as the Minister of Health who had the courage to take a stand against the wasted dollars the Medical Research Council puts into useless diabetes research and demand they support cure research. I sincerely hope you choose to do so.

Sincerely,
J. Smith



Another Possible letter to Mr. Allan Rock

If you are ambitious enough to send out just one letter, it might look something like this.

Dear Mr. Rock;

I am well aware of the millions and millions of dollars spent on diabetes education, care, awareness promotion and research of the disease and its complications.

As an educated person with diabetes, I am diligent in taking my insulin, testing my blood sugar levels and watching what I eat. Yet, as a busy full-time executive and father of two boys, as hard as I try, excellent control of blood sugar levels is impossible to achieve. The fact of the matter is, when I inject insulin into my body, I am mimicking what a normal, healthy pancreas does. To successfully mimic what a normal healthy pancreas does is difficult if not, near impossible. No amount of education, care or awareness is going to change the fact that my body is subject, each and every day, to the fluctuation in sugar levels that are so harmful to the body. The causes of the fluctuations can vary from stress at my office to having to clean up after my children. Trying to determine my insulin requirements for the day with those fluctuations present is near impossible. Even when I consult my endocrinologist, which I see on a regular basis, we find it difficult to account for every little thing that will cause the sugars to fluctuate. The only thing that will stop this vicious circle and that will save the Canadian government health care costs related to diabetes is finding a cure.

Canada is known world-wide for the discovery of insulin by Drs. Banting and Best at the University of Toronto. Today, another researcher, Dr. Anthony Sun, works tirelessly at the same university, hoping to perfect islet cell encapsulation and transplantation. His work holds great promise for those of us living with this life threatening condition. Yet his research, as well as similar research being done at the University of Edmonton by Drs. Ray Rajotte and Greg Korbutt, is greatly underfunded.

Fifty percent of people with Type II diabetes end up having to inject insulin after 10 years on oral medications. It stands to reason, therefore, that islet cell transplantation will also benefit them. Since islet cell transplantation returns blood sugar counts to normal levels, it will prevent the complications of diabetes, and put an end to the billions of dollars being spent in related health costs. Why is a treatment that stands to do so much good, still only showing promise after 20 years? It's because no government has yet made a serious commitment to funding it.

Alastair Gordon, President of the Islet Foundation, which is based in Toronto, recently stated, "Allan Rock could be a man of history if he were to authorize funding that gave Canada its second Banting and Best."

Every researcher will tell you that more money is needed to research the disease, its cause and its complications. You need to take a bold step and move beyond this type of research. You need to say, "Enough basic research has been done. Let's now fund the brilliant Canadian minds that are going to change the course of diabetes history forever."

I hope, as Minister of Health, you will take the time to investigate the area of islet transplantation yourself, and not simply listen to what those, whose livelihoods depend on the continuation of endless diabetes research, have to say about it. There is much factual information regarding islet cell transplantation at The Islet Foundation web site. Please take the time to read through it and form your own opinion regarding this procedure. The address of the Islet Foundation web site is http://www.islet.org.

Tens of thousands of Canadian lives depend on diabetes being cured. Please seriously consider what you can do to help.

Sincerely,
J. Smith

Return to Index of Current Letters
March 20, 1998

Dear Mr. Mulvihill,

I am not a member of the JDFI, nor have I ever contributed financially to it, but I wanted to write to you to express my opinions about diabetes research. You are in a position of great power, and I truly believe that what you do can have immensely beneficial consequences for those of us with diabetes. I hope that you will consider what I have to say even though I am an "outsider."

I was diagnosed with insulin-dependent diabetes in December 1968, when I was 11 years old. I have been in fair to excellent control the vast majority of my life with diabetes, and I do not currently have any complications other than lousy (but correctable) eyesight. I feel that I have lived successfully with this disease, although it affects me and what I do on a daily basis. I am intimately familiar with my disease and with the ramifications of poor glucose control, and despite my success to date I am increasingly fearful that my "good times" may soon come to an end despite my efforts to adhere to treatment protocols. The majority of my concern, however, is for my 10-year-old son, Brian, who has had insulin-dependent diabetes for almost 7 years.

The statistics are nothing less than frightening, and I know that I don't need to quote the numbers to you. Blindness, kidney failure, amputation, neuropathy and a significantly shortened life span seem to be the fate of most diabetics, even those who make a concerted effort to control their glucose levels, engage in regular exercise, and follow specialized meal plans. The report on the Trans-NIH Symposium "Diabetes Mellitus: Challenges and Opportunities" acknowledges that intensive treatment is "labor intensive, difficult to implement for many patients with type 1 diabetes, and does not achieve normal levels of blood glucose," and I whole-heartedly agree with that statement.

This report and information I have gained from the JDFI and other major diabetes-related websites, have startled and depressed me for a number of reasons. It seems to me that an inordinately huge amount of money is being spent to understand diabetes, its physical and emotional effects on people, and how to get people to adhere to treatment regimens. I'm not quite sure what is being sought, nor why so much money is being spent to determine why children and adults with diabetes get depressed and sometimes (or often) don't follow their individualized treatment plans. To those who do not have diabetes or a child with diabetes, I offer the following snippets to illustrate what our "normal" life is like:

Anyone with insulin-dependent diabetes (and their families) knows that diabetes is a lousy disease to have. You become a professional pincushion. You do shots multiple times each day, which is never fun or painless – especially when you hit a vein! You prick your fingers to check your blood sugar much more often than that. You quickly become an expert regarding which fingers bleed more easily and with less pain. Your fingers hurt too much to play the guitar. You are delighted when the number that appears on your glucose meter is "good" and are perplexed or feel guilty or upset when it is not. You only want to record your good numbers, but you write down all of them. You try to be vigilant about recording exceptions – you had a small piece of cake at a relative's birthday party but don't think your number should have been 250 because of it. You feel guilty you had the cake, even though this was only one of three or four times a year that you do so. You feel guilty because you sometimes succumb to the temptation of Mum's pumpkin pie during the Thanksgiving and Christmas holidays. You have to remember not only how many carbos you can have at each meal and snack, but also which foods raise blood sugar more quickly – and not eat too many of them – unless you are low. At night, you need to eat a snack with carbos and some protein or something with cornstarch so you can cover a possible low – but all bets are off during menstruation! Before you go anywhere for more than a few minutes, your first thought must always be about your blood sugar and meals. You have to plan for lows as well as highs, and take any needed medication and blood sugar testing supplies and equipment with you, no matter where you go. You are up to your kiester in glucose tablets. They are everywhere – in the cars, at your office, at your spouse's office, in your nightstand, in the kitchen cabinet. You have at least 2 glucagon kits, just in case. Now double all of this when your child has diabetes, too. Now you have diabetes at school and daycare to worry about in addition to the normal challenges of school and daycare. You write mini training documents on insulin-dependent diabetes and what to do if your child is high or low – and hope every teacher will read them and do what you've instructed. You have to deal with school nurses, both LPNs and RNs, who don't really know what to do when lows or highs occur. You worry about day-care outings while you're at work: will lunch be on time? Did they forget (again) the glucose tablets even though you called and reminded them? There's a new kid who has been a behavior problem so they watch him closely – will they notice right away if Brian gets low and can't tell them? Will he eat the candy bar a friend gave him because he is hungrier than usual today? Will he be high because it rained again and the kids couldn't go outside for recess? Will he be low because the cafeteria didn't serve enough food with carbos today (even though the menu with carbo breakdown they fax you every month indicated they would)? Your son gets angry at you because you get angry at him when he sneaks a couple of cookies before dinner (you've talked to him countless times about the importance of "adherence." So has his pediatric endocrinologist. So have the counselors and "big brothers" at the camp for diabetic children he goes to every summer.). Your son sometimes cries because he is "different" and does not feel like he belongs. He wants to take a break ("just for one day, Mom!" ) from the blood sugar testing and insulin injections, but you both know he can't. He's asked why God doesn't like him, and promises he'll be nicer to his brother if God will make the diabetes go away. You tell him things could be much worse, that he's actually very lucky. You show him newspaper articles and watch TV reports about kids with cancer or cranio-facial abnormalities or muscular dystrophy. You try to always be positive and upbeat. But when he wants just one more cookie, you usually say no.

My husband and I consider ourselves extremely lucky. We are employed in professional positions with large corporations that provide excellent benefits. We pay little in out-of-pocket health-care expenses. We get what we need. But diabetes is an integral – and inescapable – part of our lives. It must be accommodated and managed every day, and there is nothing we can do to get away from that. There are no vacations, no sabbaticals, no sick days (as in "I'm sick of diabetes and I'm going to take a no-needle, pig-out day!"). But we are very lucky. I shudder when I think of people with diabetes who don't have insurance benefits or cannot afford the expenses of blood sugar test strips, glucagon, insulin syringes and the like. When people joke with us that winning the state lottery would solve our problems, we can't laugh. The lottery can't give us what we want: a better treatment for diabetes. And I know that I am only one of millions who feels this way.

A lot of money has been spent on diabetes research throughout the years, but I don't believe that enough thought has been given to how that money is spent. What we don't need are more studies that tell us how difficult it is to get young children and adolescents to "comply" with or "adhere" to a treatment regimen that 1) they hate, 2) they don't truly understand the need for, 3) makes them feel different than their friends and peers, and excluded from various group activities, 4) hurts them physically, and 5) often presents additional problems, such as hypoglycemia. These things are immediately obvious to those of us who have diabetes and those of us who are parents of children with diabetes. Why is money being spent to tell us what we already know? Many of us with young children feel that a major accomplishment has been made when our kids wash their hands before eating without being told. It is absurd to think that you can get kids to comply with lifestyle rules that are painful, inconvenient, demeaning, annoying – and offer no assurances! Attention has been paid far too long to the wrong things. It's not the kids and the adults with diabetes who are the problem. It's the disease and its current, crude treatment that are the problem! And I don't believe the real problem is being adequately addressed.

What I do not want is funding for a non-invasive glucose meter. Although that would definitely be a "nice to have," especially if you have a young child with diabetes, private industry doesn't need government money to develop this, and they will make a lot of money when and if they bring a reliable, working product to market. We also do not need a needle-free insulin delivery device. An insulin patch or nasal spray would only remove the inconvenience and pain of doing shots; it could not prevent hypoglycemia. It could not result in normal glucose levels and therefore, it could not prevent the complications of diabetes. Doing shots is not the issue. The issue is that regardless of what we do, we cannot consistently maintain normal glucose levels.

What I want, what my son wants, what my family wants is a treatment that will ensure normal blood glucose levels. That is the bottom line. We need a treatment that can detect, by the minute, changes in blood sugar and adjust insulin delivery accordingly. Such a treatment would prevent diabetes complications. Such a treatment would allow us to enjoy the spontaneity that others take for granted. Such a treatment would not require us to think like a pancreas, a nutritionist and an endocrinologist.

We believe that technology has advanced to the point that, with the concerted efforts of non-profit organizations such as the Juvenile Diabetes Foundation, the NIH, and private industry, diabetes treatment could be revolutionized in the very near future through the transplantation of encapsulated porcine (or species-x, I'm not picky) islet cells. The biotechnology companies and medical/educational schools and facilities that are researching this treatment should be significantly funded and assisted in their efforts to begin clinical trials. If it works, it could change everything. If it doesn't work, at least we'll know.

I know you are well aware that islet transplantation is a very hot topic these days. The islet transplant pages on the Insulin-Free World Foundation website (www.insulin-free.org) have the greatest number of "hits", and that shouldn't surprise anyone. There are numerous inquiries and postings about "cure" research on the Children With Diabetes (www.childrenwithdiabetes.com) and The Islet Foundation (www.islet.org) websites. There is a lot of excitement, hope, anger and frustration. I know that I'm only one of many who wants to see a decent treatment for this damned disease, particularly for children.

I urge you to spend money where, in the short term, it could make a real difference in the lives of those with diabetes, and in our national healthcare spending: encapsulated porcine islet cell transplantation research. I've spent a lot of time on the internet, and I've spoken to, or exchanged email with, representatives of a number of companies involved in this research. I'm convinced that this technology is the closest to providing what I consider to be a viable treatment for diabetes. The money that could be saved by properly treating diabetes so that its complications don't overwhelm individuals and their families (without even mentioning Medicare) could be used to more vigorously fund research efforts in outright prevention of diabetes and in better treatment and reversal of complications. I cannot possibly be the only person who envisions the "domino effect" for which this technology could be the catalyst. It would be a situation in which there are no losers, just a lot of winners and heroes.

Finally, I want you to know that diabetes is not the only healthcare concern that my son and I face. My personal efforts are not the result of fanaticism. In addition to diabetes, Brian also has asthma, severe ADHD and Oppositional Defiance Disorder. (My younger son, David, also has ADHD.) In addition to diabetes, I also have rheumatoid arthritis. Diabetes is my "windmill" of choice because of the daily and long-term ramifications, and because the prospects for successful, effective treatment are so promising.

I apologize for the length of this letter, and I thank you for listening to me.

Sincerely,
Sandy D.

Return to Index of Current Letters
The Honorable Lynn Woolsey
House of Representatives
Washington, DC 20515

To The Honorable Representative Lynn Woolsey,

I recently read an article in the Diabetes Forecast magazine informing me of the huge disparity in the amount of money our government spends on diabetes compared to other diseases. I was shocked at the staggering figures: about $316 million dollars is spent annually searching for a cure to diabetes, while the figure is $551 million for breast cancer and $1.5 billion for AIDS. This figure is even more surprising when coupled with the estimated number of affected Americans and the deaths attributed to these diseases: AIDS and breast cancer combined affect 3.4 million people and kill an estimated 94,000 each year. Yet with diabetes, 16 million are affected and 160,000 die per year.

How is it that almost five times as many people are affected by diabetes, yet 1/5 of the amount of money spent on AIDS is spent looking for a cure to this terrible disease? This disparity needs to be changed.

Every day diabetics are forced to carefully monitor what they eat. In American society, this can be very difficult, especially with the raging national consumerism and the importance of eating in social situations. Even with careful monitoring of blood sugar for a lifetime, diabetic complications can arise causing blindness, amputations or death as the body struggles to function correctly with a sugar-poisoned blood stream.

As a diabetic, I am writing to you to ask you to change this figure. This disease has been plagueing the human race for thousands of years and it's time to put a stop to it. Someday, I look forward to living a normal life, not eating on a carefully measured and regimented schedule, without three injections of insulin per day. Make this happen in my lifetime, so that all of our sons and daughters can forget that this illness ever existed.

Thank you very much.

Sincerely,

Blake Tucker
10 Mt. Shasta Ct.
San Rafael, CA
94903
btucker@lucasfilm.com

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March 26, 1998

To: Institute of Medicine
Re: NIH Research Priority Setting
Project identification number: HSPX-H-98-03-A

Dear Review Committee:

Thirty years ago at a time in my life that should have been one of the happiest, being pregnant with my first child, I was told I had diabetes. I was also told it was probably just gestational diabetes, and that after the birth it would go away. Well, it didn't!

Now after 30 years of injections, (in the beginning I had to use glass syringes), sometimes up to 5 a day, endless finger sticks, (before this numerous lab visits that have left ugly scars on my arms), I am demanding a cure.

My family, on my mothers side, has had to deal with this disease for over 70 years, that we know of. So far 3 generations have been affected.

Since my diagnosis, I and my family have been caught up in the struggle to live with this disease. So far my health has been good, inspite of low's (hypoglycemic episodes) as well as highs. But, I know that eventually the long term affects of this disease will catch up with me. I want to live to see my grandchildren grow up, and to be able to have an active part in their lives, not wind up being a burden to them.

As much as I would love to be able to monitor my blood sugar levels without sticking my fingers, I don't really need a non-invasive glucose meter, as much as I need a CURE. I have for the past 5 years been using an insulin pump, and as good as it is, I'd rather have a CURE.

A lot of money has been spent on diabetes research throughout the years, but I don't believe that enough thought has been given to how that money is spent. I believe that technology has advanced to the point that diabetes treatment could be revolutionized in the very near future through the transplantation of encapsulated porcine (or species-x) islet cells or using the fancy name, xenotransplantation.

I sincerely urge you to spend money where, in the short term, it could make a real difference in the lives of those with diabetes, and in our national healthcare spending: encapsulated porcine islet cell transplantation research.

Thank you for taking the time to hear me out. I am a mother and grandmother who does not want to see this going to any more of our family's members.

Sincerely,
Teresa Faith McKay
7279 Montgomery Drive
San Antonio, TX 78239

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March 27, 1998

NIH Research Priority Setting
Project identification number: HSPX-H-98-03-A

Dear Review Committee:

The NIH must provide a mechanism by which informed people with diabetes can have a major say in how research dollars are spent. The NIDDK report "Diabetes Mellitus: Challenges and Opportunities - Final Report and Recommendations" paints a picture of research priorities that have little to do with the interests of diabetic consumers.

Informed diabetic consumers today are aware of promising research in islet xenotransplantation, a technology that has reversed diabetes in spontaneously diabetic monkeys for up to 26 months, and has shown early promise in human trials. Yet, this research receives barely a mention in the NIDDK priorities.

The problem is not the amount of money allocated to diabetes research, but the way it is spent. The famous Diabetes Control and Complications Trials (DCCT) spent over $170 million to prove what everybody already knew -- that better control of blood sugar results in fewer complications. These data could have been determined from examination of existing medical records, and did not require a massive multi-year trial. Sadly, the conclusions are largely useless to people with diabetes, as it is impossible for a human being, armed with a finger-stick tester and insulin syringes, to mimic the minute-by-minute adjustments in insulin production performed by healthy islet cells. The only answer is to replace the dead islets with living immunoprotected pig islets. Diabetics have used pig insulin for over 77 years, and transplanting the islets that produced that insulin in the first place is the next logical step.

The research priorities in the NIDDK report are clearly set by researchers whose interests share little with adults and children who struggle daily with the horrors of diabetes. Until the "customer" has a say in the nature of the product, the product will continue to completely miss the mark. It is not the first time that top down planning with no customer feedback has lead to waste and tragedy.

If the money spent to date on the DCCT and many of the endeavors outlined in the NIDDK report had been directed at islet xenotransplantation, I believe we would have eradicated the disease by now. Of course, the many lucrative research opportunities that flow from diabetic complications and lifelong medication and testing would suffer.

Until diabetic consumers have a significant say in the spending of NIH diabetes research dollars, the United States will continue to be burdened with over $100 billion per year in unnecessary costs and immeasurable suffering.

Thank you for this opportunity.

Alastair T. Gordon, President
The Islet Foundation
http://www.islet.org

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Sunday, March 29, 1998

NIH Research Priority Setting
Project identification number: HSPX-H-98-03-A

Dear Review Committee:

Please carefully review existing practices in NIH priority setting pertinent to diabetes research. Most promising avenues of cure research have received minimal funding due to time-honored criteria and peer review. I urge you to temper scientific models of evaluation with input by consumers in the diabetic community.

NIH's recommendations for government strategy vis-à-vis diabetes research priorities place very little emphasis on curing diabetes for those who already live in the grip of this monster.. The recommendations illustrate the NIH's underestimation of the tortured lives diabetics endure. I particularly object to comments about "Improving adherence to therapy-based approaches". I have been a nurse in advanced practice for twenty years and can tell you first hand about "adherence" and its outcomes. Not an hour goes by that I don't calculate and plan my child's doses, diet, activity level, variations in activity, and impact of shifting hormones: all in the service of preserving the integrity of her organs, nervous system and circulatory system so she'll be healthy when a cure is available. Yet, what I see receiving robust attention by the NIH is research that will keep us working as walking, talking pancreases. Even more upsetting is the notion that public funds should be allocated to advance private industry's development of devices that will fill the pockets of shareholders. Diabetics are a billion dollar market for bigger, better devices and drugs.

I find the NIH objective to "Study interventions to decrease psychiatric and social comorbidities in individuals with disease (e.g. depression, eating disorders, and family dysfunction, and their impact on glycemic control)" outrageous. We can barely compel insurers to cover existing necessities for survival! How will it make sense to create subspecialties of mental health services that are already only minimally available to the public? I can tell you first hand about the grief and loss responses in a child who leaves the hospital baffled why she wasn't cured. "But Mommy, I never thought you'd take me home unless this was fixed". I can tell you first hand about the struggles of a family with an uninvited monster, diabetes, in their home. I can tell you first hand about heartbroken parents wondering what they did wrong and scouring the Internet for hope of a cure. I seriously doubt psychodynamics of unresolved grief and loss, depression, and family dysfunction warrant research funded by the already pathetically inadequate monies available for diabetes research.

I urge you to allow the voices of the diabetic community to be heard. If you heard us you would know clearly that we want a cure and rely on our government agencies to advocate for us with funding for cure research. Though industry has offered diabetics fancier (expensive!) gadgets and Lispro, and the DCCT's cautioned them to live closer to the dangerous edge of hypoglycemia, diabetics experienced no progress toward a cure for over seventy-five years. NIH priorities do not presently represent diabetics' urgent priority for cure research funding.

Sincerely,
Melanie Richardson

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March 28, 1998.

NIH Research Priority Setting
Project identification number: HSPX-H-98-03-A

Dear Review Committee:

I have just read the report: "Diabetes Mellitus-Challenges and Opportunities". The report clearly outlines the devastating results of living with diabetes. It also states that people using currently available intensive treatment methods still experience glucose levels that are well above what is considered the normal range.

I was, therefore, interested to read, in the introduction, the suggestion that experimental bioengineering and surgical approaches to improve islet cell transplantation should be developed. Since intensive treatment methods do not return blood sugar levels to a normal range, or eliminate complications, it seemed logical that new, innovative methods would be actively pursued.

However, the rest of the report concentrated on encouraging the development of projects that would keep many researchers busy for many years to come, without necessarily improving the lives of those of us who live with diabetes. Islet cell encapsulation and transplantation have been proven to return blood sugar levels to normal and allow people with diabetes to live healthy, productive lives. Yet, the report did not indicate any commitment to serious funding of this lifesaving procedure.

The people making the decisions on behalf of those of us who need this disease cured seem to be acting in their own best interests. You must seriously consider establishing a diabetes consumer liaison to represent the needs of the diabetic community. The research community, and the NIH, exists to benefit those living with difficult medical conditions, not vice versa. It is time to fund research that will CURE diabetes, not just study the disease forever. It is time to make the diabetes research dollars count.

Citizens of many countries look to the United States to provide relief from the diseases that destroy our lives. As a Canadian, I would like to think that the NIH is working toward ending diabetes for the citizens of the world. The most recent report simply indicates the NIH is committed to providing jobs for researchers. I hope you will take the steps necessary to ensure the voices of those with diabetes are heard loudly and clearly. It is only then that the NIH will be able to fulfill its mandate to fund research that will lead to better health for those with diabetes.

Sincerely,

Sue Huson
529 Forest Edge Road.
London, Ontario, N6J 3R4
Canada

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March 29, 1998

NIH Research Priority Setting
Project ID HSPX-H-98-03-A

Dear Review Committee:

My name is Therese Bujold, I am the mother of a 4 1/2 year old boy with Type 1 diabetes. Trevor was diagnosed at 25 months, much to our shock and sadness. Living with this disease has been a very tough road. We struggle everyday to do our best to maintain Trevor's health, both physical and psychological; keeping on a happy face for his sake. He is too young to fully understand the seriousness of his disease. To him the 5500 finger pricks and 1825 shots he has received so far is the worst of it. The sad fact is, with his diagnosis at such a young age, he will most likely experience the horrific complications that await most long term diabetics, such as kidney failure, blindness, and amputation.

The myth of tight control and "taking care of one's self" is simply not a ticket, as many believe, to a long and healthy life for people with Type 1 diabetes. This fact is very difficult to accept, and it is why I must ask for justice in funding allocation for the people with diabetes. These people have a very difficult, if not low quality of life with the maintainance and stress involved in living with diabetes. In the past, I do not feel that justice has been served for them. Too many of our precious dollars that could have been channeled to promising cure research have gone to meaningless studies that will provide no real benefit.

There are very promising potential curative therapies being discovered today. I feel it is imperative that the NIH focus in on these areas of research. There was over $30 million additional allocated in the recent congressional budget for diabetes. Out of this only 5 million was allocated to encapsulated islet transplantation, with the limit per researcher being a mere $200,000. Encapsulated islet transplantation has a very real potential to restore Trevor's blood sugar to normal level; thus saving him and many others from the inevitable complications that await him. Complications that will cost our taxpayers. There are several private domestic companies that are currently working on this avenue of research and the research has been proven effective in preclinical studies on primates. There is simply not a reasonable amound of money allocated to this research and this lack of funding is a lack of justice to people living with diabetes.

I also will make a plea to you, as many others are, for the formation of a Diabetes Research Public Liason Group, with a cross section of people with diabetes, including the parents of children with diabetes, to assist in steering the decisions regarding who and what gets funded in diabetes research.  I believe it is very justified to expect the Americans who are at the receiving end of studies have a say in what is important to them.  There are VERY knowlegable and educated people with diabetes who have a very good grasp of the "big picture," and can make excellent recommendations regarding the direction of research.  What WE see as important, should be a high consideration.

Please, to you who represent my child and others with Type 1 diabetes, give us the chance to realize our dream, to be free of this monstorous disease. We've had enough of behavioral studies. It is a very real possibility that we can reach this goal, if you allow the proper amount of funds for promising CURE research. We will be waiting, watching, and hoping. Thanks.

Sincerely,

Therese Bujold
tbujold@up.net

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March 30 1998
 
NIH Research Priority Setting
Project ID HSPX-H-98-03-A

To whom it may concern:

I am writing to urge you to wholeheartedly support increased funding, research, and treatment for diabetes. Diabetes research and treatment are matters of life and death for me and my family. This disease has devastated my family on my mother's side. We have a particularly rare and deadly mutation of the disease called Maturity Onset of Diabetes of Youth (MODY). MODY manifests in our family when we reach our 20's, and it does not skip generations.

My first experiences of diabetes were among my first real memories as a child - and, unfortunately, my only memories of my maternal grandmother. She died at 43 years of age, after having been blind and crippled from complications of diabetes since the age of 38. I was only 4 years old at the time of her death, but I have snatches of memories of my mother, who was her caregiver, helping her into the bathroom and of my grandmother lying in bed. I remember being afraid of my grandmother, which I regret, but I was frightened because she was so ill.

My maternal great-grandmother was also a diabetic, but she managed to produce seven children - five girls and two boys. Only two girls survive, both of them are in their fifties and are diabetic. All of the others died at early ages from complications of diabetes including heart disease and stroke. Several of them were amputees or multiple amputees before they died. Many of their children, my cousins, also suffer from diabetes.

My mother has been diabetic since her late 20's also. She never received proper treatment, but continued to use the same doctor for years even though she knew that she was not doing well. She suffers heart damage as a complication of diabetes and underwent open-heart quadruple-bypass surgery on 12/23/96. She is doing well to this point. She recently began to see a new doctor at my urging, who started her on insulin and is monitoring her closely. My only maternal uncle, my mother's younger brother, is also diabetic.

My only sister is 3 years younger than me. She is diabetic and still trying to treat with oral medications and diet. I worry that her fear of shots will keep her from accepting the best care that she can receive.

Finally, I would like to tell you my own story. I am 35 years old and a MODY diabetic who is controlled by insulin pump. I was mis-diagnosed as a Type 2 for seven years. I was prescribed the oral medications and left to rot. Literally. I could not be controlled on the oral meds, but my doctor did not know of any other treatment plans. When I finally began to have complications such as deteriorating eyesight and the beginnings of kidney dysfunction, I sought another doctor. She referred me to an endocrinologist who correctly diagnosed my family's unusual type of diabetes and started me on insulin.

I am now tightly controlled by using an insulin pump. I have educated myself about my disease and make it my business to receive the best care possible. Because of the excellent care and tight management of my disease, I have seen remarkable improvements in my own case. At my most recent eye exam, my eyes were significantly improved. My kidneys are normal. I am healthier than I have ever been before in my life, and anticipating having a child sometime in the next year.

I hope that this letter will encourage you to seek out and give your strongest support to diabetes-related projects. Please feel free to contact me if I may be of any further information to you. Thank you in advance for your help in this life-and-death matter.

Sincerely,
Bambi Nix
3520 Warrior River Road
Hueytown, AL 35023

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March 30, 1998

NIH Research Priority-Setting Review Process
I.D. Number: HSPX-H-98-03-A

Att'n: Review Committee and Delegates

Suggestions:

1. Appoint or accept nominations of Diabetics to serve on a Consumers Liasion group which should be established at NIDDK. I base this on the lack of research results to date and the apparent reluctance of NIH to address "cure" and "xenotransplantation" issues.

2. Resolve to avoid all'safe and soft' research projects until you make an effort to seriously fund projects that deal with islet xenotransplantation,their clinical trials, and timely reporting to a Diabetic Consumer Group and your taxpayers.

3. Resolve to become informed and involved in leading edge opportunites such as the Workshop of International Issues in Transplantation Biotechnology, Including the Use of Non-Human Cells, Tissues and Organs that was held on March 18-20, 1998 in New York City. There is the FUTURE of Cure Research.

4. Contact the Organization for Economic Co-operation and Development(OECD)Communications Division for their March 12, 1998 news release. OECD co-hosted the above Workshop with the New York Academy of Sciences. This Workshop was not held under the darkness of night.

5. Read The Islet Foundation report of the March 18-20, Workshop. This can be found at: /34.htm. This will give you a flavour for the future in Cure Research.

Future Role of NIH - A Consideration

I think it is safe to assume that the NIH is a major source of funds for researchers and as such they look to this body for funds and a thus a livelihood for themselves. Since the research results, in the eyes of the diseased, seems to be lacking in concrete results that would put an end to human misery, perhaps the NIH should consider a new approach to enhance the results so they would have some beneficial impact on those of us who are still alive and our families.

I see the NIH taking on the role of 'parent' to researchers - a wise, involved, responsible parent. If NIH, as a parent, had resolved that in the case of every disease that a cure would be of interest to everyone - then you must be disappointed. OVER SEVEN DECADES, and thousands of researchers and their applications and not one Banting or Best in the whole NIH Family. A concerned parent would ask about the lack of results for the amount of money they have doled out. When they-researchers/children repeatedly fail at a project and never ask for guidance, a smart parent would ask themselves some soul searching questions.

Like parents,the NIH, would have researchers who are not equal in their abilities and certainly some would have greater speciality skills than others. As well, there is the chance a parent would also see potential aptitudes in some that are clearly outstanding and should be identified and nourished. This kind of intervention of guiding and redirecting is what a good parent does. It is of no benefit to anyone, the DISEASED included, for the NIH as a parent to say, "If only we had ...." and then hope the community won't notice your failure as a parent.

The apparent lack of willingness of the NIH to seriously address Cure Research has become obvious. With the Interent available to ever increasing thousands on a daily basis, the "family secret" of no cure in Diabetes and other diseases is surely making its way through the diseased community like a bad rumour. During your Review in April, you may expect Alastair T. Gordon to be knocking on your door and providing the NIH with a map to Wellsville so you can guide your researchers to a Cure for DIABETES.

Kindly consider the role of a superior parent. You may have researchers who are just wasting our money and some who need to be redirected to another line of work. I expect the NIH to do the job I can't - sort out the researchers and get the next generation of Brave Bantings and Bests to work on a goal for a CURE. I can assure you there will be "Glory Enough for All" for a job well done.

Thank you for your consideration to these matters.

D. Dianne Terry
Third Generation Diabetic

995 Gainsborough Road
LONDON, Ontario, Can.
N6H 5L4

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The Hon. Allan Rock
Liberal Party of Canada
Rock.A@parl.gc.ca

Dear Minister Rock;

My son was diagnosed in September of 1997 with Type 1 diabetes. He is insulin dependent at the young age of 14 months. He is now coming upon his second birthday.

In only a few months of research we have learned of a potential cure for diabetes. Simply put, by injecting certain cells from various sources into our little guy, and anybody else with the disease, blood sugar levels have been demonstrated to return to normal for extended periods of time, thus dramatically reducing or eliminating all of the accepted complications associated with the disease. Dr. Anthony Sun of the University of Toronto reversed diabetes in primates with this procedure in 1997. One individual I am aware of who underwent this procedure has been insulin free for four years.

Part of the problem lies in the source. The inventory of human cells is unreliable, so porcine (pig) cells are seen as a viable alternative. Xenotransplantation, as it is called, is fraught with ethical arguments which range from the ridiculous to the sublime. However, as lay persons who know that for decades diabetics have controlled their disease with insulin derived from the same species with no complications, the regulatory dialogue surrounding xenotransplantation seems like rhetoric at best, while our son can not access what appears will eliminate the concerns with respect to the disease. The cure is not perfect, but it has been demonstrated to be remarkably effective.

The next step in the process is controlled human clinical trials of the procedure. The science around the clinical trial should perfect the procedure and rid the world of the disease. This is said to be under way in the States in one form or another, with pharmaceutical corporations and educational institutions scrambling to perfect the process.

Diabetes is horifically expensive, both economically and socially. But because it is not immediately fatal, it does not attract the media and political attention it deserves. It does not sell papers or air time. It is however the leading cause of blindness, amongst other scourging complications and costs the Canadian economy 9 billion dollars every year.

The medical community appears to be on the cusp of a cure for this silent killer. Everybody has their interests, and I am not one to discount the ravages of AIDS, or cancer, or any other fatal disease. However, it seems to me that if a cure for any one of these was as close as the diabetes community is to its goal, it would be on the fast track to completion.

Thank you for your time.

Ken Cunningham

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March 31, 1998

Honorable Congresswoman Furse,

I write this letter to you in your capacities as a member of Congress, co-founder of the Congressional Diabetes Caucus, and parent of a child with diabetes.

I was diagnosed with Type 1 diabetes in December 1968, when I was 11 years old. For all these years, I have been told (and therefore believed) that insulin was the only treatment for diabetes and that I would simply "have to live with it". I was taught that I needed to be stoic and accept my condition with grace and dignity, because everyone has problems and many other diseases/conditions are much worse. I have accepted my diabetes, tried to comply with increasingly invasive treatment, and learned to deal – sometimes with the help of others - with the problems associated with low blood sugars. I have no significant complications, and for that I feel very lucky.

My husband and I were horrified when our 10 year old son, Brian, was diagnosed with Type 1 diabetes after he turned 4. We have tried to instill in him the knowledge and confidence that he can help himself and live with diabetes. We have dealt with numerous problems at daycare and school, some even involving RNs, and only feel that he is safe away from home when he is at the diabetes camp he attends each summer.

Last August I read a Reader's Digest article that changed my life. It highlighted medical breakthroughs, and included a few paragraphs about Neocrin Company and their research with the xenotransplantation of encapsulated porcine islet cells for the treatment of Type 1 diabetes. I was amazed, as I had never heard or been told of anything like it, and began Internet research.

Since August I have frequently searched the web sites of the NIH/NDDK and the FDA, the ADA and JDF, various medical journals, news organizations, and corporations for information about diabetes. The statistics regarding complications and mortality, the cost to insurance providers and Medicare/Medicaid, and the current and predicted rates of prevalence of diabetes, have flabbergasted me. The DCCT may have shown that tight control reduces the occurrence of complications, but it also failed to mention that only 5% of diabetics are so closely monitored and treated, and that the reduction in complications was actually quite low. The truth is that multiple daily insulin injections, frequent glucose monitoring, and a rigid meal plan cannot begin to mimic the control that functioning islet cells provide. I am afraid for myself and my son.

I discovered that numerous companies and medical facilities throughout the world have been working on treatments/cures that will provide diabetics with constantly normal blood sugar levels without requiring strict adherence to insulin injections, glucose testing, exercise programs and meal plans. In my opinion, and that of many other diabetics, doctors and researchers, the treatment that holds the most promise in the short-term is encapsulated porcine islet cell transplants. Quite a few companies and medical facilities in the U.S. are researching this, including Encelle, Neocrin Company, Biohybrid, Circe Biomedical, VivoRX, BetaGene, Sertoli Technologies, Joslin, and the Diabetes Research Institute. There are others in Canada, New Zealand, Europe, and South America. I've named those I can think of off the top of my head.

I've learned about the cost of research work and the types of research projects that have been funded by the NIH/NIDDK, the JDF, and ADA . To my dismay, much of the research funded by our government and the major non-profit organizations has involved such things as studying how to get diabetics to comply with treatment regimens, why depression afflicts so many diabetics, and how diabetes affects male and female sexuality. Very little government and non-profit funds have been dedicated to research that can provide an effective treatment for diabetes, one that won't require that we think like pancreases, endocrinologists and dieticians.

I urge you to push our government to devote much more funding toward effective diabetes treatments/cures that can ensure normal blood glucose levels without the risk of hypoglycemia. I feel that we need to provide treatment which can prevent the complications that so burden healthcare providers, both private and federal. The current cost is outrageous, it threatens the financial well-being of our country and, worst of all, it is not necessary.

In the 1920s, insulin was a miracle, certainly one for which I am grateful. But it is time we moved on to treatments that truly address this disease.

Thank you for listening to me.

Sincerely,
Sandy D.
Texas

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EGLISE BAPTISTE DE CHOMEDEY
Georgia & Murray Heron
229, Couturier
Boisbriand, Quebec
J7G 2K5

March 22, 1998

Dear Mr. Rock:-

We appreciate so much your prompt attention to our enquiry concerning the Government's involvement in research for a cure for diabetes and especially for your support of what is being done on islet xenografts.

We are happy to learn that your department is supporting an active research group at the University of Toronto who is working on this aspect of a cure.

A number of our acquaintances are particularly interested in this Toronto project. We would appreciate it if you would inform us as to how much the government has allocated for this research being done in Toronto. It is felt by a great number of people that much more of the taxpayers money should be spent on a direct cure through the islet transplant procedure, rather than spending huge sums on mere treatment of the disease.

It is also believed that islet transplantation is a much more effective answer to the problem of diabetes, since it maintains a natural balance of insulin, rather than the artificial pancreas which you mention in your letter, which could easily malfunction and dump dangerous levels of insulin in the blood.

You realize, sir, that under the good hand of God you could be used to deliver millions of Canadians from a dread disease, one that holds them victims in a perpetual prison, and which will eventually lead to their deaths.

It is becoming more and more evident that the only obstacle to a complete cure for diabetes is lack of funding. You may have the answer.

Hoping to hear from you at your convenience and with best regards, I am,

Yours truly,
Reverend Murray Heron

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From: 
To: 
Date: 
Subject:
Laurie C. Ridgel 
Dr. Harold Varmus 
Saturday, April 11, 1998 10:06 AM 
Diabetes
Dear Sir,

I am quite convinced that federal funding for medical research is always a hot topic. Everyone has their own special interest. Mine is diabetes.

My daughter, Kiersten, was diagnosed with insulin dependent diabetes at the tender age of 18 months. I do mean tender. Imagine yourself forced to pierce tiny holes in the soft little fingers of a child still in diapers. Picture drawing up a fair measure of courage as you draw up another syringe with tiny doses of insulin, praying that it isn't too much, nor too little. Feel the warmth of a new tear in the night, as you take another blood sample at midnight, hoping the lost sleep will help prevent some of the drastic complications looming in the years ahead. Yes, my interest is in research for diabetes.

I understand that over the past decade, people with other diseases and maladies have pressed for their share of the federal pie. I, now more than ever, feel the pain of others as they hope for cures and medical advances, and even tiny sparks of hope. I, too, share these hopes. My interest is for a cure for diabetes. My hope is that the NIH will reset its priorities for the sake of 10% of the population who live with diabetes.

Dr. Varmus, you need to understand that while people die of HIV induced AIDS, and while the terror of Alzheimer's looms as a prospect for our aging population and their families, diabetes affects a vast number of lives. My interest is in diabetes research. For you see, when Kiersten was diagnosed, our whole family "got diabetes."

I know you are fully aware of the day to day problems for the diabetic. I know you comprehend the misery and threat to life that long term complications of diabetes can cause. I want you to be fully aware of what life is like for all others around the diabetic, as well.

Kiesten is now 5 years old. She is looking forward to school for next fall. I worry about her bruised feelings as she has to sit through her class parties, saving her cupcakes until she can go home and have another shot of insulin to go with it. Kiersten LOVES to be outside, enjoying camping and hiking, but her father and I worry constantly that the level of exercise isn't matching the food she ate. She and her sister have never been able to keep their Halloween candy, or eat a chocolate bunny for Easter...feeding one means denying the other, and denying the nondiabetic is cheating her of part of her childhood as well. And their grandparents have missed the joy of pies and cakes at holidays. Nobody can stomach the piece that Kiersten can't eat. You see, the interest of my entire family is diabetes research.

I met a man on an airplane the other day. He stared as we did Kiersten's blood glucose tests. I was self-conscious. He explained, "It must be hard traveling with two little ones. Especially with diabetes. I had diabetes for 27 years. I had a kidney and a pancreas transplant 7 years ago. I sure don't miss the shots. It's still hard, though, because my nephew has very brittle diabetes." I understood his stares then. His heart was tearing, as mine was as I listened to his story. We each found solace in finding another kindred spirit, but knew it was at the expense of another family living with diabetes, its daily stabs and pokes, and the ever-looming presence of the future "what ifs".

My interest is in diabetes research. The interests of our family lie in diabetes research. The lives of almost 10% of the population can be affected by diabetes research. The NIH needs to reset its priorities and reestablish higher levels of diabetes research funding.

Dr. Varmus, thank you for your time. I hope my words haven't fallen on bureaucratic ears.

Sincerely,

Laurie Ridgel
6905 Live Oak Drive
Kelseyville, CA 95451
laurie@pacific.net

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April 13, 1998

Thanks Dr. Varmus.

Sincerely in good health,
Scott Spencer

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April 14, 1998

Dr. Harold Varmus
National Institute of Health
Washington, D.C.

Dear Dr. Varmus,

I just finished reading your comments regarding funding for diabetes research. Quite frankly, your lack of concern for diabetes research funding is alarming.

Diabetes is a leading cause of death in this country. As a health care provider in a long term care facility, I see the effects of diabetes first hand every day. I've seen the patients wracked with pain from neuropathies. There are the patients on dialysis every other day who are physically exhausted after their treatment session.It can take them 24-48 hours to recuperate, just in time for another session. Amputees whose circulatory systems are so poor from the effects of diabetes that they will eventually lose the other limb. And then there are the stroke patients with long standing diabetes. If they are lucky, they regain their previous level of function. Most are not. And this scenario is played over and over again in millions of people's lives everyday.

I've been watching these people die by inches for years and quite honestly, I pray that no one you love or care about has to endure these hardships. Personally, I've watched a parent "die by inches". Four years ago, I endured my worse nightmare when my then 4 year old son was also diagnosed with diabetes. Everyday, with no days off for good behavior, this child endures numerous finger pricks and injections in order to survive. This is no minimal task for any family.There are no guarantees that this very cruel routine will guarantee him freedom from any of the complications that I've witnessed first- hand. These complications are very real.

It's time that you and all the "powers that be" in Washington take this disease seriously. Millions of people are suffering because the people who are supposed to represent their needs have been dropping the ball for years. Plase take this matter more seriously and help support more funding for cure research. We don't need to have millions of dollars spent on new gadgets, or anyone telling us the obvious about better control. What we DO need is more efforts by the NIH and the NIDDK into tangible research coupled with the appropriate level of funding to find a cure. Please, don't let another generation of diabetics and their families down.

Sincerely,

Mary E. DeMello
Acushnet, Ma.

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Subject: 
Date: 
From: 
To:
Your NIH comments re. diabeties research! 
Tue, 14 Apr 1998 09:53:58 -0500 
Faith McKay 
Dr. Harold Varmus, NIH Director
Dear Dr. Varmus,

I, as a diabetic for 30 years, who saw my mothers only brother die from a heart attack, brought on by his 15 years of diabetes, both my mothers parents suffer with diabetes in their last years, a nephew 34 years old with diabetes for 32 1/2 years, whose health is far from perfect, his older brother, 35, with diabetes for 17 years now, a cousin 48 years old, heart problems, heart surgery that took over a year to heal, and several female family members with gestational diabetes living with fear they will still become diabetics, I take exception with your comments made at the congressional hearing in Washington on March 26, 1998.

I won't take the time to tell you cost of this disease to our government, you already know that. I would like to appeal to you as a diabetic wanting a CURE, not promises. From the very first, (my diagnosis), I've been told a cure was just five years away. THAT WAS 30 YEARS AGO!

How can you stand up and make the statement that the NIH "paid proper attention to diabetes." The sad fact is, we as diabetics are being doomed by the lack of financial support being denied the number of researchers out there who have the potential to find us the cure we so desperately need.

I'm not saying that Alzheimer's and AIDS are not areas of concern. But compare the cost of these patients long time care and the cost of the care, treatment for the complications caused to diabetics over the years.

I live in fear that my daughter, who I was pregnant with when my diabetes was discovered, see, I was one of the females in my family with gestational diabetes who was unlucky enough to keep it, will someday face a life of diabetes. Not one generation of my family has been spared this curse! EXCEPT, the fifth, these are my granddaughter, and my siblings grandchildren. But with our history, I KNOW, that without a cure they will face this insidious disease also.

Would you like to come and explain to these precious children what they are facing? I don't think so. But I pray you never have to explain it to one of your own!

Faith McKay

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Dear Review Committee:

I have had the misfortune of being a type 1 diabetic for 12 years, having been in that time as compliant and polite as any person stricken with a life threatening disease could possibly be. I take my insulin religiously, exercize regularly, watch my diet to the point of obsessive fanaticism, generally doing everything above and beyond the call of diabetic duty in a vain attempt to maintain near normal blood glucose levels.

I come nowhere near those elusive levels. I am extremely sensitive to the highs and lows of blood glucose fluctuations which inevitably occur ALL the time DESPITE fanatic devotion to control. The bottom line being this: diabetes is NOT a disease that can be controlled adequately, no matter WHAT the level of intensity. Multi-injection insulin therapy is a treatment that marginally succeeds in keeping me alive AT BEST. It is an antiquated therapy that has remained relatively unchanged since the discovery of insulin 75 years ago. Don't you think that it is about time that SOMETHING is changed?

I do not require a better "treatment" for this disease, being that by its very nature it is UNTREATABLE. I do not need better blood glucose monitors, higher grade insulins, quicker acting glucose bars to relieve relentless hypoglycemic episodes, or ANY of the newly proposed "projects" or "breakthroughs" designed to perpetuate and capitalize off of this disease and my suffering. I need a CURE. Nothing more, nothing less. (I do consider proposed and promising islet-cell encapsulation/transplantation a CURE. It just needs more of that elusive funding.) I am not asking for fame, wealth, power, beauty or adoration. I am simply DEMANDING that I be given a chance of obtaining an iota of what I lost 12 years ago, what charitable organizations (such as JDF) have been promising me for years, what I have been raising charitable dollars for. I need to be a fully functioning member of society once again, and a CURE for diabetes is the only thing that will deliver my humble goal. Please hear my words --- they are all that I have left to share, thanks to diabetes...

Thank you-
Doug Short
 
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To: Novo Nordisk
Subject: Inhaled Insulin
Author: Melanie Richardson, RN, CS
Date: 6/11/98 3:25 AM

Dear Mr. Nedwin:

I've recently read a press release entitled, Emerging Technology May Revolutionize Treatment Options for Diabetes Patients. Within it, Richard P. Thompson, president and chief executive officer of Aradigm Corporation is quoted as declaring, "The biggest problem in treating diabetes today is patient compliance with multiple daily insulin injections."

I'm writing to tell you that this is profoundly erroneous and to caution you about your "marvelous" new inhalable insulin. Thanks to your product, the Novopen, multiple daily injections (MDI) of Humalog keeps my child in very tight control and has non-diabetic A1Cs. Brace yourself for a whole new generation of "biggest" problems in treating diabetes: hypoglycemia. Unless your prospective "huffers" can afford up to 8 test strips a day and, for some reason, are more capable of being obsessive about testing than they are about injecting, you're setting up some major disasters and likely lawsuits.

The same obstacles that compromise insulin compliance are even greater with testing compliance. Beware in your quest for profit, the legal community will be ready. Finally, despite what the DCCT may tell you, living with this monster has taught me that "the main problem with treating diabetes" is loss of spontaneity, loss of freedom, loss of 20 years from your life expectancy, loss of childhood and adolescence, expense of medical supplies essential to survival.....I could go on.

Your "Emerging Technology" depresses me, as I await a cure for my child.

Melanie Richardson, RN, CS
 
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The Honorable John Edward Porter
U.S. House of Representatives
2373 Rayburn House Office Building
Washington, DC  20515
May 26, 1998

Dear Congressman Porter,

I am not a resident of Illinois, but because you are Chairman of the Labor, Health & Human Services and Education Subcommittee I wanted to write you about diabetes research funding, an issue about which I have very strong opinions.  I was diagnosed with Type 1 (insulin-dependent) diabetes when I was 11 years old, in 1968.  I have no serious complications because of it, although it affects me every day – sometimes quite negatively.

My intention is not to explain to you what diabetes is, what it's like to live with it, how horrible it can be, or tell you how much it costs the federal government and the private healthcare industry to treat it and its complications.  I'm sure you've heard all about those things from the American Diabetes Association and the Juvenile Diabetes Foundation, among others.

In the last year I have discovered (primarily through Internet access to the NIH Web sites and those of medical institutions and research facilities) how many people in our country are affected by diabetes and how much money is being spent by so many to treat it  – especially the federal government.  It is an outrage that so much money is being spent to "manage" this condition and treat its horrible complications, while so little is spent to cure it or provide a therapy that will ensure normal blood sugar levels.

Diabetes has been ignored for far too long.  It costs taxpayers more than virtually any other condition, yet so little attention is paid it by the federal government.  I can't believe a medical condition that costs so much money is allowed to proliferate (and it is) without a concerted effort to provide better treatment. It's really a national disgrace. And it sure isn't very cost-effective not to do more about it.

Please don't believe anyone who tells you insulin is a "cure" or that diabetes can be easily managed if patients will only comply with treatment regimens. From personal experience, and from contact with many other diabetics, I know that even when diabetics do their best to follow their treatment plans, enough blood sugar fluctuations occur to result in damage to various organs and nerves. Insulin is not a cure; it's like putting a bandaid on a wound that needs 100 stitches. For many people, it's like putting a bandaid on a sucking chest wound. Those of us with diabetes need normal glucose levels – that's the bottom line. We don't need non-invasive glucose meters or ways to take insulin without injecting it.  In fact, insulin is actually a big part of the problem.

From the research I have done, I feel that the prospect of islet cell transplantation (the cells in the pancreas that produce insulin) holds the greatest hope and potential for a decent/proper treatment for diabetes – but that's another subject.

I want you to know that I am not a consumed fanatic about this issue.  I am married, well-employed with good benefits, and am fortunate to have two wonderful boys. My 11 year old son was diagnosed with Type 1 diabetes 7 years ago, but he also has allergies, asthma and severe ADHD.  I also have rheumatoid arthritis. My father died of esophageal cancer 3 years ago. There are many diseases and conditions for which I could advocate. The reason I focus on diabetes (in my very limited spare time) is because I believe researchers and private industry have gained the knowledge and technology to do something about this damned condition, but more funding and more focus is needed.

I urge you to dramatically increase the amount of funding for diabetes research, in the amount the ADA suggests, and use your position to push the NIH into focusing on cure and prevention. Again, a cure/treatment that provides normal blood sugar levels would result in drastically lower costs for treatment of complications, and would prevent the complications that occur in so many diabetics, saving even more money.

You could really make a difference in this country – and the world (not to mention my son's life).

Thank you for listening to me.

Sincerely,
Sandra L. Donchess
Texas
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Subject:    Diabetes funding
Date:        Wed, 24 Jun 1998 23:16:37 EDT
From:       Mary DeMello
To:           Dr. Phillip Gorden, Director, NIDDK

Dear Dr. Gorden,

Thank you for taking the time to answer my letter.

I am writing to tell you that what we are looking for as parents to an 8 year
old child with diabetes. We want a cure. Please do not waste your time or
taxpayer dollars on anything else.

My son isn't bothered by finger sticks. A bloodless meter is still a device he
will use several times a day to judge his diabetic care(and sometimes himself
in the process). In the past four years, we have had our fill of the latest
technologies. He still feels crummy alot from either lows or highs. We
understand this will happen in children and even more when he reaches
puberty.Hormones can make even the most compliant of teens have fluxuating
blood sugars. I shudder to think what all these fluctuating blood sugars are
doing to his body. What shape will he be in 30 years? 38 years old should be
the prime of his life, and yet he could be dealing with dialysis, amputations
or blindness at 38, while his counterparts are enjoying fulfilling careers and
families.

It truly saddens me that from all the initiatives that the NIH and the NIDDK
could become enthusiastic about, you have decided to promote a program that I
believe is called"step up and take control of your diabetes for life". I don't
want my son to control his diabetes for life. I want a cure so he can live
free of diabetes.

 In order for most diabetics(my son included) to maintain the level of control
you are speaking about, they are at increased risk for insulin reactions.
These reactions are scary, dangerous and sometimes even fatal.

The regimen he would need to follow "for life" is cruel and inhumane. We
constantly monitor his bloods sugars and adjust his food intake with his
activity level. In the last four years, we have been slaves to a schedule. We
can't sleep later the 8:00 ever or this throws his insulins dosages and
therefore his blood sugars off for the day. We need to make sure he eats 6
times a day, whether he's hungry or not. The amounts of food have to be
specific to his insulin dosages and his bodies needs.Have you ever tried to
feed a 4 yo who just isn't hungry?or stop a your child from having seconds?

The whole premise of this "control your diabetes" program will make people
blame my son for his complications and maybe even resent the money they will
have to pay to treat his complications because he wasn't careful enough. Even
the most careful of diabetics can get complications, its just the nature of
the disease.

This new initiative, along with your response letter, lead me to believe you
have no clue what diabetics truly want or need. What's scarier still, the
enthusiasm of this program leads me to believe that its a smokscreen for the
truth: You don't have a cure, you're not even close to a cure and you don't
want anyone to know that. So, instead, let's lay the blame on the diabetics
themselves.

I, for one, won't buy it.

Sincerely,

Mary DeMello
Acushnet, Ma.
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Date:    June 30, 1998
To:       Members of the Diabetes Research Working Group
From:   Sandra L. Donchess
Re:       Diabetes Research Working Group - 7/9/98 Meeting

I recently discovered that the Diabetes Research Working Group (DRWG) would hold a meeting on July 9, 1998.  As I understand it, the DRWG is charged with "developing a comprehensive plan for NIH-funded diabetes research that would include recommendations for future diabetes research initiatives and directions."   I have been told that your recommendations will assist the NIH in devising a plan that, while dynamic, will essentially guide the direction and funding for diabetes research for the next 10 years. The notice posted on the Federal Register web page on June 16, 1998, which also appears on the NIDDK website, invites public comment from private citizens.  I am a private citizen and I want my opinions to be heard and seriously considered.  I hope you all will do that.

I was diagnosed with Type 1 diabetes in December 1968, when I was 11.   My 11 year old son, Brian, was diagnosed with Type 1 diabetes in May 1991, when he was 4.  We adhere to prescribed multiple daily injections, multiple daily glucose tests, diet and exercise regimens – the normal treatment.  I am especially vigilant with son, as he also has severe ADHD, Oppositional Defiance Disorder, and asthma.  I also have rheumatoid arthritis.  These medical conditions are a fact of life for us, and we deal with them every day as best we can.  I have a number of concerns that I hope you will address.  I will simply list and explain them.

1. I want the DRWG to remember why you're doing all the work, studies and research you're doing.

I believe the beneficiaries are supposed to be the people in this country who have diabetes.  Every decision you make should be measured against the questions:  "Will it ensure normal glucose levels?  Will it eliminate the threat of hypoglycemia?  Will it free them from any of the innumerable constraints of current therapy?"

2. Implement a consumer liaison group and involve the public in your decision-making processes.

The majority of the members of the DRWG consist of NIDDK staff and researchers/doctors/ scientists.  In my opinion, the NIDDK should not at all be represented in the DRWG.  I feel very strongly that the DRWG needs to implement a consumer liaison group that is similar to the lay review board of the Juvenile Diabetes Foundation International and the Director's Consumer Liaison Group of the National Institute of Cancer.  In addition, there are other advocacy groups – and private citizens - whose input should be seriously considered.

Enterprises of any sort, be they for-profit, non-profit, government, etc., that do not solicit input and feedback from their customers/clients, members of their target market, or groups they serve, will not succeed.  Governments that do not work with their citizens to solve the problems that their citizens have will not be able to solve them.  If the NIDDK were a business, it would have gone out of business many years ago.

I was very recently told that the primary reason citizen input is not solicited by the DRWG is because the studies, discussions and concepts are beyond the understanding of anyone who is not a doctor, researcher or scientist.  In Texas lingo, that's a pile of cow patties.  While that may be true for some people, I disagree with the basic premise.  You are excluding us based on mistaken, presumptuous beliefs that we do not know enough or cannot learn.  You are mistaken.

3. It's the disease, stupid!

I assume you remember the "It's the economy, stupid!" that George Bush endured when he ran for re-election.  He was perceived as not understanding or believing that there were serious problems with the economy, and he lost the election primarily because of this perception.  In terms of diabetes, I don't think you folks "get it" – and we're losing the battle against diabetes because of that. I am "stepping forward" to tell you that I am sick and tired of diabetics being told that they aren't "doing what they should" or "don't take care of themselves" and that, therefore, they are responsible for their high glucose levels and even deserve what happens to them.
 
We all know what diabetes treatment involves.  There is no other condition that requires the patient to deliver 99% of the treatment every day, on time, without succumbing to sickness or temptation or fatigue or personal weakness.  And the "treatment" is not a guarantee against complications.  Diabetes costs the U.S. almost $100 billion a year – all of you know the numbers.  That should tell you that the problem isn't the person with diabetes, it's the diabetes and current therapy. Even the report on the Trans-NIH Symposium "Diabetes Mellitus: Challenges and Opportunities" acknowledges that intensive treatment is "labor intensive, difficult to implement for many patients with type 1 diabetes, and does not achieve normal levels of blood glucose."

In the computer software industry, when a product has an option that is so ill-designed and implemented that it allows users to "hang" themselves and can negatively impact their businesses, the option is removed and worked into the product through automation.  Current diabetes therapy qualifies as one of these horrid, misbegotten options.  It is dependent almost solely upon the daily vigilance, discipline and constraint of the patient.

In addition, there are so many unknown or not-yet-understood factors that affect metabolism and glucose levels.  Despite all I and my son do to comply with our diabetes management programs, neither we nor our endocrinologists can predict, for example, when growth hormone will be a problem, when allergies will cause my son's glucose to skyrocket, when my menstrual cycle will cause me to "crater" at night and require glucagon,  or when stress will cause us to be low or high.  I often feel I would have better results if I used a Ouija board.

Each of you already knows that current diabetes therapy is not particularly effective, even in the best of cases. It does not result in normal glucose levels.  It causes hypoglycemia.  It does not necessarily delay or prevent the complications of diabetes. It's time to quit belittling, haranguing, burdening and harassing the diabetic.  It's time to focus on and fund treatment that works, rather than trying to change human behavior and human nature.  It would be a hell of a lot less expensive, too.

4. Here's what I (and many others) DO NOT want:

Better mechanical or "engineered" glucose sensors
Better mechanical glucose sensors with hypoglycemia alarms
Improved exogenous insulin delivery systems
A mechanical pancreas (an "intelligent insulin pump") that uses a mechanical or engineered glucose sensor and a mechanical exogenous insulin delivery system
More therapies that try to modify "diabetic behavior" in order to gain compliance with current therapy
More studies that try to prove whether hypoglycemia impairs diabetics' reasoning and functioning
More studies that try to prove whether hyperglycemia impairs diabetics' reasoning and functioning
More studies that try to determine why diabetics frequently suffer from depression and other psychological problems and disorders
More studies that try to find out if diabetes complications might be reduced or prevented if diabetics maintain, on average, non-diabetic glucose levels

5. Here's what I (and many others) DO want:

Therapy that ensures normal glucose levels at all times
Therapy that completely removes the threat of hypoglycemia
Therapy that removes the need for us to think like pancreases, endocrinologists, and nutritionists
Therapy that removes the necessity of monitoring blood sugar every day, multiple times a day
Therapy that does not require the delivery of exogenous insulin every day, multiple times a day

6. Specifics

Islet cell xenotransplantation, proliferation, and neogenosis have received virtually no attention from the NIDDK.  Why?  Islet cell transplantation of any sort was not even mentioned in Dr. Phillip Gorden's testimony for the FY 1999 President's Budget Request.  Rather than discuss and fund research "to engineer insulin-producing cells using constructs that will confer a specific property on the cell, such as the properties of glucose recognition, glucose sensing, and other similar regulatory steps", why do you not consider islet cell encapsulation and transplantation?  Why do such cells need to be engineered?  They exist already.

I am particularly interested in encapsulated porcine islet cell xenotransplantation as a short-term, "proper" treatment for diabetes.  Non-engineered islet cells do double duty - glucose sensing and insulin delivery.  They are available now and they'll always do those things better and less expensively than anything we mere mortals can come up with.  I am flabbergasted that the NIDDK has invested so little time and money to explore its potential.  I want the NIDDK to rethink its position on this.  I want much more consideration given to islet cell transplantation.  I want to see it heavily funded.

There are approximately 40 private companies, corporations, and research/medical facilities that are working in the area of encapsulated islet cell transplantation.  While more work certainly needs to be done in this area, such a treatment would provide us with what we need – normal glucose levels, no hypoglycemia, a life like "normal" people have.  Such a treatment would provide the government, and public and private health insurance enterprises, with what they want – substantially lowered costs.  The Insulin-Free World Foundation estimates that their web pages about islet cell transplantation are those most often "hit."  This should tell you that islet cell transplantation is something in which many, many diabetic citizens are interested.

Again, I want the DRWG to remember why you're doing all the work, studies and research you're doing:  It's for us, not for you.

Sincerely,
Sandra L. Donchess
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