"Politics as usual" can make any average citizen either start nodding off, or running for the hills. Or depending on the issue, it sometimes makes the blood boil.
This month, the Diabetes Community happens to have an unusually keen interest in watching Washington D.C. and the political scene -- as hundreds of fellow advocates from a few of the largest diabetes organizations hit Capitol Hill to share their stories and talk with lawmakers and staffers.
It's not quite as juicy as the new NetFlix series House of Cards, but there is a lot of D-stuff happening...
For one thing, a new study on the annual cost of diabetes ($245 Billion in 2012!) was just announced a few weeks ago to a great deal of media fanfare, while a group of diabetes care organizations want PWDs (people with diabetes) to push their Congressional members to support legislation that would create a new commission focused on diabetes care standards in the U.S. (which could be good!)
The American Association of Medical Colleges released an emotionally charged print ad in D.C.-area publications featuring a little girl looking hopeful, and calling for Congress not to cut government funding for medical research. Displayed prominently as one of the aspirations is "a cure for diabetes," and the country's largest D-advocacy organizations have their names listed alongside prominent cancer, arthritis, and Alzheimer's foundations.
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Meanwhile, the ADA is working to gain national attention tomorrow with its annual D-Alert Day, just about two weeks after the March 10 airing of a two-hour documentary on CNN that outlined the perilous state of healthcare in America these days. Diabetes got many mentions in the film, and JDRF actually ran a couple of commercials during the airing of the film.
You name the diabetes organization, they've got something going on this month. But is that attention a good thing or too much for the D.C. crowd to digest?
"The more dialogue the better," said Cynthia Rice, JDRF's senior vice president for advocacy and policy. "So much of what we're all doing overlaps, and it's important to have year-round contact about all this from the various groups. We are all bringing attention to diabetes and that's a benefit."
ADA - By the Numbers
During the first week of March, the ADA's annual Call to Congress brought more than 200 people from across the country to the Capitol, to be present as the ADA released its newest study on the skyrocketing costs of diabetes in the U.S. -- the first time the numbers had been updated in five years. Costs are up 41% from the last study in 2007, and a PWD spends 2.3 times more on healthcare than someone without diabetes, the research found. The full study will be published in the April edition of the ADA's Diabetes Care journal.
High-ranking government leaders attended that news conference, like Sen. Susan Collins from Maine who co-chairs the Senate Diabetes Caucus, Ann Albright with the CDC's Divisions of Diabetes Translation, and Judith Fradkin with the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) within the National Institute of Health.
Great to see these high-profile names associated with our cause, even if it was a carefully timed photo opp for the ADA's lobbying event.
Sure, much of this is focused on type 2, the bulk of the 26 million Americans now living with diabetes, plus the 79 million with "pre-diabetes." But type 1 is weaved in that data, too!
The ADA tells us they've considered adding a separate component to the study that looks at type 1 versus type 2 diabetes costs, but there's simply not enough strong data available to provide a "confident estimate of the differences." Most sources gather cost data based on someone's "having ever been told they have diabetes," but not distinguishing between types. Ugh.
So while advocates can educate and inform Congress about the differences and distinctions, the hard data showing comparisons just doesn't exist. Perhaps T1D Exchange with its new national type 1 registry can help change this, especially as doctors and organizations begin to tweak their information-gathering processes to better record diabetes specifics.
JDRF & ADA as Bedfellows
JDRF also used that cost study information during its annual Government Day on March 18-19, making sure brochures for Congress were updated to reflect the latest figures. Individual advocates had about 480 meetings with Congressional members or staff this year (compared to 410 last year), and Rice says they focused their messaging on thanking Congress for renewing the Special Diabetes Program as part of the "fiscal cliff" deal at the start of the year. Congress passed a one-year renewal for the program through Sept. 30, 2014.
Run through NIDDK, the SPD helps fund both type 1 research and also type 2 treatment, and also fund educational programs for Native American populations. Both ADA and JDRF (yes, both!) advocate for continuous funding for SDP to support diabetes research that benefits all types of diabetes treatment and research.
But just because the SPD got renewed doesn't mean we're out of the woods.
You probably know that early in the year, Congress reached a "sequester" deal that made government cuts across the board -- including to NIH which funds the SDP and many other health programs and medical research. Rice says the sequestration law imposed a 5% cut in funding for NIH and most other government agencies, resulting in a $22 million loss (!) from the total $430 million historically raised each year for type 1 research.
You can shake your head about "politics as usual" hurting medical and diabetes funding -- I know I do. But luckily, late last week Congress reached a deal to avoid a government shutdown by the end of March. Part of that deal slightly increased NIH funding, so at least we got a little break there.
Beyond Money and Research
Funding has been the talk of the town in D.C. lately. But patient and D-advocacy organizations are also trying to get more focus on other legislation working its way through the political process.
The House Energy and Commerce Committee concluded three hearings last week on mobile health, looking for "the sweet spot and that fine line" between patient safety and the regulatory hand of government, according to the mobile health technology site mHIMSS.com.
Meanwhile, the ADA has its sights on the Medicare Diabetes Prevention Act of 2013, introduced at the beginning of March and currently caught up in committee negotiations. Basically, that bill expands an already-existing 16-week prevention program that offers type 2 PWDs a structured path to focus on healthy eating and physical activity.
The American Association of Clinical Endocrinologists (AACE) is also asking its members -- and us PWDs! -- to urge Congress to support a bill called the National Diabetes Clinical Care Commission Act, which would create a public-private commission made up of endos, other D-healthcare professionals, federal government officials and also patient advocates to identify gaps in existing diabetes care programs and look at how to better tackle diabetes.
The legislation that would create the Act comes in the form of two identical bills, H.R. 1074 and S. 539, introduced March 12 in the respective legislative chambers. The brunt of legislative debate happens in smaller committee meetings, and that's where these two bills are for now. If enough lawmakers back the bills, the legislation could move to the House and Senate floor for a possible vote. So far, that hasn't happened.
Not only is the AACE behind that bill, but the ADA and JDRF along with other groups like the Endocrine Society and American Medical Association support it too.
Bottom line: these organizations are all working together to raise awareness and get Congress thinking about diabetes. Really, they are! Nineteen of the top D-related national orgs actually teamed up in 2011 to form what's called the Diabetes Advocacy Alliance, a big cooperative org that convenes congressional briefings, analyzes and recommends legislative topics, and holds meetings on the Hill to help cut through the information. You can read about their policy priorities here (or follow them @DiabAdvAlliance).
Although various groups may have slightly different priorities at times, it really is a team effort when it comes to lobbying for legislation, says AACE's legislative and governmental affairs director, Sara Milos. That's encouraging.
Of course, those of us who aren't in D.C. might be wondering... what exactly can I do to be a part of this "team effort?"
All of these efforts need our lawmakers' attention, and we can be part of making that happen. We can all let our Congress members know about why this D-legislation is important. Here are some things we can do to raise our voices:
* Catch your U.S. Congress members on their home-turf to talk diabetes! Most get away from Capitol Hill throughout the year and travel back to their own districts -- a perfect chance for us to touch base. Find your representative or senator by contacting their state office; you can ask about local town hall meetings or events that might be on the calendar, or even request a time to meet one-on-one.
Remember, they work for us -- and listening is a key part of that. We don't have to be political insiders to share our stories and raise our voices! (Thank goodness!)