Although I was diagnosed at age 8, I spent most of my childhood pretty much oblivious to diabetes advocacy. My family raised money for the annual Walk to Cure Diabetes, but that was it. Only in high school did I become more aware of the devastating impact that diabetes has on people. I applied to be a JDRF Children’s Congress delegate at age 15, and in June 2001, my mother and I traveled to Washington, DC, to meet with members of Congress and share our story.
JDRF’s marketing was (and still is) almost exclusively focused on children. I turned 16 a month after the Children’s Congress, and I was convinced that my “career” as a diabetes advocate was already over. Because when I turned 18 years old, no one was going to want to hear from me anymore, right?
Like many people, I believe JDRF is more interested in using children as the vehicle for their message than adults with diabetes. I’ve tried to convince myself that it made sense: children are cute and cuddly. Even I feel more compelled to find a cure for diabetes when I see a child pricking their finger or wearing an insulin pump the size of their head.
While we were in DC over the weekend for Government Day, we shared these frustrations with about how JDRF portrays itself with the other volunteers on the Grassroots Advocacy team. Not only did these parents scoff at the notion that adults weren’t important to JDRF, many of them actively encouraged me to get involved and to spread the word to other adults with type 1 diabetes. Many of the volunteers were parents, but several of them were also adults with type 1 diabetes. During our dinner on Sunday, Jeffrey Brewer, JDRF’s new CEO & President, gave a brief presentation and then answered questions. A few adults with type 1 diabetes (not bloggers, but volunteers) spoke up and shared their frustrations, and also their support for JDRF’s new-found commitment to adults with diabetes. But I also noted that these were adults who were still involved with JDRF. They’re people who’ve found a way to participate in an organization that they support, and work together to make a difference.
Volunteer after volunteer expressed how the Grassroots Advocacy team needs adults to help with lobbying members of Congress. And it makes sense: as the 18-and-over crowd, we are the constituents who voted these guys into office. Several volunteers also reiterated that adults with diabetes made a big impact because we are the ones who can best express what it is like to live with diabetes, year after year after year.
There are 109 new members in Congress. That is a lot of people who need to get clued into what it’s like to live with diabetes. JDRF is committed to meeting with at least 60% of newly elected members by June 30. So far, they’ve met about 20%. In the two days of Capitol Hill meetings during Government Day, there were 500 meetings. Whoa!
But what does the government actually do for diabetes?
Federal funds for diabetes are sent to the National Institutes of Health, and specifically to the National Institute of Diabetes and Digestive and Kidney Diseases, which uses the money for critical research in genetics, environmental triggers, immune therapies, diabetic retinopathy, and the artificial pancreas.
One important advocacy project is the Special Diabetes Program, which is a “unique federal research program dedicated exclusively to type 1 diabetes research.” It provides one-third of all federally supported type 1 research. Wow! The Special Diabetes Program was recently renewed for two programs, one for research on type 1 and one for prevention and treatment focused on the Native American program, for $150 million each for the next two years. But it will expire at the end of 2012, so we will need to rally the troops so that Congress will pass another extension of its funding.
The fact that in our current economic climate there were no cuts to the Special Diabetes Program is remarkable. There are cuts the House wants to make, including a $1.6 billion reduction in NIH funding and a $241 million cut to the FDA, which impacts resources and personnel. President Obama, however, won’t sign it and the Senate didn’t pass it. Whew! In fact, the President proposed increasing the NIH and the FDA’s budgets for the Fiscal Year of 2012.
One current focus for JDRF is approving guidance for how researchers will continue clinical trials for the artificial pancreas. Researchers can conduct clinical trials in the hospital setting, but there is no FDA guidance for trials in an outpatient setting. Outpatient trials are the next step in showing the safety and efficacy of the artificial pancreas. (We wrote about “home-based” AP studies at the ‘Mine recently here.) The longer it takes the FDA to approve guidelines, the longer we have to wait for revolutionary new tools.
The JDRF recently worked with experts in the field to draft their own guidance document, with the goal of setting clear expectations and “providing a pathway for research and product development.” So it’s très important! Now JDRF is asking members of Congress to sign a letter urging the FDA to announce their requirements quickly, so the research for the artificial pancreas doesn’t delay! The FDA doesn’t want Congress to be unhappy with them, so the more signatures there are, the better!
In addition, stem cell research, health care reform and state issues are also things that JDRF’s Advocates’ team works on throughout the year. The American Diabetes Association is also very active on Capitol Hill with their own agenda, which includes discrimination and school issues, stem cell research and the Special Diabetes Program. Last year, the ADA and JDRF came together to work on the important issue of moving research forward.
- Sign up to be an advocate with the JDRF or with the ADA (both are good!)
- Participate in the upcoming Promise to Remember Me Campaign, which launches in August (if you sign up to be an Advocate, they’ll contact you to get involved)
- Stay informed on the legislative issues on Capitol Hill
- Say “thank you” to your Member of Congress for extending the Special Diabetes Program and urge them to sign the letter to the FDA
Whether you join JDRF or ADA, grassroots advocacy is definitely an arena that needs adults with diabetes (both type 1 and type 2). And if you see something going on at one of these organizations that you don’t like, speak up! If something is missing, volunteer to add or change it. Most JDRF and ADA chapters have a small staff, with much of their time going toward established fund-raising programs, like the Gala and the Walk. They rely heavily on volunteers.
Non-profit organizations are a lot like politics: If you don’t use your voice, no one will listen. So rather than sit on the sidelines and gripe (as we humans are apt to do), I’d urge everyone to stay involved and make a difference.
“You must be the change you wish to see in the world.” – Ghandi