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?
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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.