Asking ADA the Tough Questions

I had actually planned to interview the American Diabetes Association’s newly elected Chair of the Board, R. Stewart Perry, when I read about his taking office a few weeks ago. But the questions I wanted to ask were pretty hard-hitting, so it seems the ADA thought I ought to talk with someone in their ranks with both lots of media savvy, and a “deep clinical background.”


Dr. Sue Kirkman, the ADA’s Vice President of Clinical Affairs, was the organization’s spokesperson for the Avandia crisis. She’s a pro, all right. Hear her in action on this podcast. Here are Kirkman’s discernibly savvy answers to (IMHO) a few of the toughest questions facing the ADA at this point in time, delivered via email:

Is the ADA planning to take a more leading role in warning patients about any problems with existing drugs? i.e., act as an ombudsman?

When the ADA learns of potential drug safety issues that could affect people with diabetes, we do our best to assess each situation to determine the appropriate action and utilize our network of communications vehicles to reach appropriate stakeholders with information in a timely manner. Ways in which we communicate with our constituents (which include health care providers, people with diabetes, and loved ones) include ADA’s web site, electronic e-alerts, e-newsletters, journals and magazines.

The ADA also offers another forum through which ADA can provide callers with information and resources in a timely manner.

That said, it is important to note that the ADA is not a drug safety regulatory agency. We look to the U.S. Food and Drug Administration (FDA) for guidance on drug safety issues.

What about the ADA’s newly revised nutritional guidelines? Why does the organization seem so reluctant to recognize that lowering carbohydrate intake can aid in glucose control?

The 2008 Standards of Medical Care and the Nutrition Guidelines have been revised to recommend either carbohydrate restriction or fat and calorie restriction for weight loss, since there is increasing evidence that these diets are equally effective over the short term (up to one year, the duration of the longest studies). There is also evidence that the most important determinant of weight loss is not the composition of the diet, but whether the person can stick with it, and that some individuals are more likely to adhere to a low carbohydrate diet while others may find a low fat calorie-restricted diet easier to follow. As it has in the past, the ADA continues to emphasize the importance of sustained, moderate weight loss and increased physical activity for people who are overweight or obese and at risk for diabetes or living with diabetes. Since the large majority of people with type 2 and over half of those with type 1 are overweight or obese, weight loss is clearly a major therapeutic strategy for many people with diabetes.

In terms of glucose control, the new recommendations do not recommend against carbohydrate
restriction for people with diabetes. There continues to be strong evidence for
fat and calorie restriction for diabetes prevention (the Diabetes Prevention
Program) and for control of type 2 diabetes (the one-year results of the
Look-AHEAD study). The ADA’s Professional Practice Committee will continue to look at the evidence regarding diet composition as it emerges.

How will the ADA be reaching out to get closer to patients’ real-life concerns in 2008 (i.e., being more welcoming to the type 1 community, becoming more involved in Social Media, etc.)?

For more than 60 years, ADA has sought to offer an objective, scientific, and reasoned voice about diabetes, and resources to all those affected by diabetes. In contrast to some other diabetes organizations, ADA seeks to serve those with pre-diabetes, type 1, type 2, gestational diabetes, family members of those with diabetes, healthcare professionals of many disciplines, and people of all ages, ethnic and racial identities, and socioeconomic status.

In terms of specific outreach to people with type 1 diabetes, below are a few of ADA’s initiatives:

The largest provider of diabetes camping services for children with type 1 diabetes, with more than 10,000 children of all ages attending day and resident camp programs, as well as weekend retreats and one-day events each year.

ADA’s Family Resource Network (FRN) has grown to 45 sites nationwide and continues to focus on peer-to-peer support, social and educational activities for families, and school advocacy information, training and support.

ADA’s Safe at School campaign works on many fronts to ensure that students with diabetes are medically safe at school and have the same educational opportunities as other studies.

Recent victories stemming from ADA’s Safe at School activities include:

  • building a coalition of all of the major diabetes organizations in support of our campaign principles;
  • the National Parent Teacher Association passing a resolution supporting ADA’s position;
  • providing assistance to individual families around the country, and training hundreds of attorneys, health care professionals, and parent advocates who could then assist families facing discrimination and educate schools on how to provide needed care;
  • developing numerous educational resources including a treatise on the legal rights of students with diabetes;
  • and passing diabetes care legislation in four states.

The ADA also created a new Youth Strategies Team to bring greater synergy and focus to all ADA does for children and families. Major efforts have been taken to identify areas of need and opportunities for growth to expand ADA’s commitment to these families. A major outcome from that worked resulted in the recent launch of ADA’s Planet D – Explore. Discover. Connect.

Through Planet D, youth with type 1 diabetes can explore and discover new possibilities about themselves and their diabetes while connecting with other children like them. The Planet D Web site provides a completely safe and secure online environment for youth to leverage diabetes management tools, learn about issues affecting people with diabetes, build personal D-identities and interact with other youth through a variety of social networking opportunities including message boards, personal sharing and online polls. In the coming months, corresponding pages will be added for parents, educators, ADA Family Resource Network members, and Diabetes Camp attendees as well as additional programs and resources for children affected by type 1 diabetes that are part of the Planet D initiative.

ADA’s message boards
include a type 1 community and a community for parents of type 1 children.

A number of ADA advocacy issues are highly pertinent to people with type 1 diabetes, including: advocacy for stem cell research within federal limits, legal advocacy for people facing discrimination in hiring or promotion due to their diabetes (these cases have all been related to type 1 adults, and the ADA has been successful in a number of precedent-setting legal cases), advocacy for increased federal funding for diabetes research, including research for type 1 prevention and treatment, and ongoing advocacy at state levels to pass state legislation mandating coverage for diabetes education and supplies in the final few states that do not have such laws (as well as successfully fighting against repeal of such legislation in numerous states).

A very large organization with lots and lots of arms… Many thanks to the ADA and Dr. Kirkman for bringing these answers to the patient community via a Social Media channel here. That in itself says a lot, IMHO.


14 Responses

  1. Bennet
    Bennet January 22, 2008 at 7:58 am | | Reply

    Funny, she didn’t metion Dr. Kahn’s commenys about meters, insulin pumps or CGM. Wonder if it was because they didn’t seem T1 friendly?

  2. Val
    Val January 22, 2008 at 8:40 am | | Reply

    “over half of those with type 1 are overweight or obese” – where exactly did she obtain this statistic? I’ve never seen anything specifically dealing with weight statistics of Type 1′s…can she point me to the study?

  3. Sarah
    Sarah January 22, 2008 at 8:45 am | | Reply

    She also seemed to forget that adults can have T1, too. All of the programs she mentioned have to do with children and/or their families. Does the ADA have the same myopathy when it comes to adults with T1? I swear the non-D public doesn’t realize that T1 does not go away when those children become adults. And not to forget those who are diagnosed as adults. I’m getting more and more frustrated with the ADA.

  4. Elijah M
    Elijah M January 22, 2008 at 9:21 am | | Reply

    Ms. Kirkman’s responses look as if they were copied and pasted from somewhere else, in that despite their length, they don’t directly address the issues Amy raised, nor do they fully answer the questions. Possibly the most sterile thing I’ve read in ages.

    So yeah, I don’t see myself revising my opinion of the ADA any time soon.

  5. Michele
    Michele January 22, 2008 at 9:40 am | | Reply

    I agree with Sarah’s comment regarding complete disregard for adults with T1. Granted we are a smaller piece of the D population but an important and well informed piece. It seems that this attitude of discounting adults with T1 is right in line with Dr. Kahn’s technology comments. Hmmm…does the ADA have a major blind spot where we are concerned?

  6. Adam Becker Sr
    Adam Becker Sr January 22, 2008 at 10:32 am | | Reply

    Thanks for arranging and publishing this ‘discernibly savvy’ interview. Interesting!

    I, too, wonder what gives with ADA’s odd statements on low-carb. My sense is that there are some large internal disagreements on this – which is why what comes out of the ADA is inconsistent, sometimes incoherent.

    I request that you try to do an interview about this with Frank Vinicor. He’s a past president of the ADA. He also has written the Forwards to the last two editions of Dr Richard Bernstein’s “Diabetes Solution,” (which is somewhat of a bible for us low-carb’ing diabetics.) I believe he is now working with the CDC National Center for Chronic Disease Prevention and Health Promotion.

    Adam Becker Sr

  7. carol
    carol January 22, 2008 at 10:41 am | | Reply

    I agree with Sarah re: the lack of programs and recognition of adults with Type 1. No wonder people think we won’t live long. We seem to become invisible even to the ADA past the age of 18. Thank God for the OC, TuDiabetes, and other forms of support not affiliated with the ADA!

  8. AmyT
    AmyT January 22, 2008 at 1:22 pm | | Reply

    As usual, you Guys nailed it: these answers are very “canned,” plus they don’t address adults with Type 1.

    I would have preferred a more candid look at the ADA’s plans, but until that’s offered, we’ll have to take what we can get :) At least there are some good programs in the works here.

  9. Toby
    Toby January 22, 2008 at 8:54 pm | | Reply

    You know, it is a sad day when a patient organization is scared to answer some questions.. wouldn’t it be great if they could look on concerns of their constituents as an opportunity – not something to hide from.. Just my two cents.

  10. Diane J Standiford
    Diane J Standiford January 23, 2008 at 1:08 am | | Reply

    I wonder what her salary is? She seems woefully ignorant on certain points; most T1s I have known were NOT overweight at all.
    Big words/small minds, so says my 100yr old aunt.

  11. Musicisourhigh
    Musicisourhigh January 23, 2008 at 2:30 am | | Reply

    Your blog has been one of the most helpful and relatable blogs I’ve come across in a long time. Thanks for sharing your journey and time

  12. Melitta
    Melitta January 23, 2008 at 1:20 pm | | Reply

    Dr. Kirkman’s responses reflect the fact that ADA ignores adults with Type 1 diabetes. And according to the CDC, 57% of newly diagnosed Type 1 diabetes are over the age of 20, and that percentage excludes slow-onset Type 1 diabetics (aka LADA). The vast majority of people with Type 1 diabetes are adults. Amy, if you do interview R. Stewart Perry, could you please ask him to address why ADA ignores the majority of Type 1 diabetics? Thanks!

  13. DL
    DL January 23, 2008 at 1:54 pm | | Reply

    I think ADA needs to improve for T1 adults – I definitely agree with everything that’s been said above.

    Why don’t we DO something about it? Identify what resources we need and suggest it to them. Start a petition. Being proactive and providing feedback is the key to making changes…

  14. JasonJayahwk
    JasonJayahwk January 23, 2008 at 3:04 pm | | Reply

    Amy, how come they didn’t talk with you over the phone? I think that verbal answers are a lot more honest and it gives the interviewer a chance to ask follow-up questions.

    Will the ADA accept interview questions over the phone with you in the future?

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