Saturday, February 20, 2010

Politics of Diabetes

Two days, two meetings, two lawmakers... One message: We need continued federal funding for Type 1 diabetes research that can enhance our knowledge about this disease and pave the way to a cure.

That Diabetes Advocacy Work was in full swing this past week, and the message from both Sen. Evan Bayh and Rep. Dan Burton was the type of response you'd hope to get from anyone, no matter what their political beliefs may be.

Both 1-on-1s were a part of the JDRF Promise to Remember Me Campaign, in which I'm helping on to secure meetings or quick meetups with Congressional members. Goal: To thank them or pursuade them for their support on legislation renewing the Special Diabetes Program that is run through the NIDDK and helps fund both Type 1 research and also Type 2 treatment and education programs for Native American populations. A JDRF priority is to get a multi-year renewal before this program runs out at the end of 2010, resulting in no more of the $150 million per year funding that would be a 35% cut in federal support of diabetes. This would be a $200 million per year extension, for five years.

House Bill 3668 is pending, and the Senate is prepping to unveil one of its own soon.

Advocating for this legislation is the Promise To Remember Me Campaign, which has a goal of 400 meetings nationally and 298 by the end of February. While an official current count isn't posted online at this point, the number is somewhere right around 270 or so. You can check on any conducted, scheduled, or future meetings in your area here. The JDRF also needs more people to help volunteer just a little time to help setup these important meetings.

On message, these gatherings mean translating the daily task of blood test monitoring, CGMs, prescription need, health care costs, insulin development, cure research, and years of Living With Diabetes into what is a quick-punch message to the lawmaker taking the time. You have to not only secure a few moments on their "all busy legislative schedule" through an assistant, but if that happens you have to be concise and on point and somehow relay a "bottom line" about why they should support this, if they don't already. So is the Politics of Diabetes, where you must recognize the patients' perspectives are balanced or even trumped by the Big Pharma or Company Business interests, while balancing the financial picture with overall public policy implications. Why should they care, and what does it mean if they don't? Or if they can't get past the political bickering so prevalant in Washington D.C., where even the most moderate and central of lawmakers can't move out of the mud. Children, the face of Type 1, are easy to use to help send the message - but it takes all of us to make the message resonate for what it means to everyone.

On Friday, we gathered in downtown Indianapolis for a meeting with Democratic Sen. Bayh, who many may know recently announced he wouldn't be returning to the Senate once his term ends at the end of this year. Though he's out, Bayh's support in 2010 on this funding is important and he has a chance to be a part of this as a legislative priority. This meeting was initially set for December, but the pending health care reform bill in the Senate at the time forced him to postpone. We weren't sure if the resignation announcement would impact the meeting, and were pleased that it didn't interfere. He spared about 10-15 minutes in the early afternoon, running a few minutes late as he came right from the airport. While overall unfamiliar with diabetes based on questions he asked, the senator seemed to listen and express an interest in what was being said. Even kept a sense of humor. About 40 people attended, mostly children and their families but also some adults who've been living with Type 1 diabetes for as many as 45 years.

The Indiana State Chapter's JDRF Advocacy Leader Cindy Lorentson Cook thanked the senator for his time and spoke about the need for his support on the Special Diabetes Program, which several of his colleagues are supporting following similar meetings. She explained that House Resolution 3668 has been introduced and is pending on that side of Congress, while Sen. Byron L. Dorgan, D-North Dakota may be introducing a similar piece of legislation in the U.S. Senate once the week-long President's Day break comes to a close. She asked if we could count on his support, to which Sen Bayh responded: "How about a one-word answer: Yes." Applause ensued.

While not all present could personally tell their stories because of the senator's busy schedule, many individuals brought "leave behinds" in the form of letters, photos, or personal items telling the senator about their Life With Diabetes. A few families (such as the Brown family) told him about their challenges in Living With Diabetes. Sen. Evan Bayh asked several questions, such as whether diabetes is mostly a childhood disease and if it's linked to family connections. He also indicated he was aware that some prominent athletes are diabetic, such as Chicago Bears quarterback Jay Cutler. The senator also said that while he didn't have diabetes in his family, his mother died from breast cancer and the understands and appreciates the challenges of chronic conditions. Particularly those involving children. After the meeting, the senator posed for a group photo taken by JDRF - Indiana Outreach Director Liz Held.

A second more personal meetup came Saturday, with Rep. Dan Burton at one of his town hall meetings. Attending with me were father and son, John and Joey Lopshire (the latter is a Type 1 teen since Feb. 2006). We thanked him for his support on this in the past and offered our appreciation for his continued work as part of the Diabetes Congressional Caucus. He asked some personal questions about us as PWD, as well as general questions about causes of Type 1 and the relationship/differences between Type 1 and 2. We discussed the ongoing important research and clinical studies funded by these grants. He offered to personally call or write a letter to the NIH about this, and also noted that he's eager to encourage his Congressional colleagues to support the introduced H.R. 3668. We posed for some photos, stayed for his town hall meeting, and then also provided him with one of JDRF - Indiana's newly-printed adult toolkit brochures to brush up on Type 1 during his plane ride back to Washington D.C. later that afternoon.

Of course, the D did try to swoop in and prove that it was present - like a child perking up when hearing his or her name called. In preppring for the first meeting with Sen. Bayh, an Unexplained Low of 48 came up that morning. Impaired my ability to read a news release about a lawsuit. Stopped me from combing through a federal court document. Canned the coherent conversation carrying on between myself and a colleague. Glucose tabs and a yummy homemade breakfast treat brought in that morning took me up to safe levels, just in time to handle a few hot-topic items that came up at work prior to the Bayh meeting. A month earlier, I'd shaken the senator's hand at the federal courthouse up the street while covering his announcement of three judicial nominations, and experienced a Low that early afternoon as well. I've now started wondering if Sen. Bayh actually causes Low Blood Sugars, rather than the High Blood Pressure the rest of Congress creates for any American....

Overall, this was a productive couple days of lawmaker meetings. Yes, we need national reform in our health care system and many aspects must be addressed. But this is about the federal funding for treatment and research, among overall educational and outreach efforts for the Big Diabetes Community.

In my opinion, the Indiana lawmakers' support is critical because they represent a state where you have the likes of Eli Lilly, Roche Diagnostics U.S., Anthem/Wellpoint, various medical device-maker interests, and an emerging biotech industry. These businesses are powerful players in the Type 1 research world, and programs they start or participate have incredible impact on millions of us within the Diabetes Community worldwide. Sen. Bayh's voice in this, as well as the influence of Republican Sen. Dick Lugar, can play a powerful role in convincing other senators why this support is so critical. Every moment we have to bend their ear counts. Same goes for the Reps, who represent chunks of the state but are integral to making sure they know the JDRF and what the true impact of these federal funding initiatives truly mean for us. (Hint to all Lawmakers who may not have had JDRF meetings or are uncertain about supporting the SDP).

So, the Advocacy Work continues...

2 comments:

Shannon said...

Thank you for your continued hard work on this effort, Mike. It really does make a difference when these lawmakers are able to see T1s in the flesh. It makes us real, instead of just statistics! Great work, as always!

Camille said...

Mike,
Thank you for all your efforts in working towards a cure. These meetings are not only important for the families attending to voice their challenges of living with diabetes and hopes for a cure, but also provide valuable information for the legislator to carry back to Washington. These meetings help them understand that funding research for a cure is not only a compassionate choice, but also a financially wise one. Camille