Monday, March 21, 2011

Doing Our Part

Our Diabetes Online Community is a powerful voice, and we're at a time when we all need to do our part in raising our voice to help keep diabetes research moving forward.

This is our chance to make sure that what we've achieved in recent years doesn't get sucked into a black hole of bureaucratic inactivty - a.k.a. the FDA.

The ever-slow government agency that reviews medical devices and treatment possibilities is in need of attention, specifically because it's got on its radar important research such as the Artificial Pancreas Project that is a "closed loop system" us diabetics have long dreamed of (short of a cure). At this point, the project has been successfully within hospital settings but it now needs to move into the clinical trials outside of the hospitals - to where the "real people" are able to use them in every day life. This will help research the safety and efficacy of this treatment option, which not only would be a step forward in treating diabetes but also could set the stage for cure advancements.

But the FDA doesn't have any guidance for how that happens in outpatient settings, and that's what is needed now. The longer it takes the FDA to approve these guidelines, the longer people have to wait for this Artificial Pancreas to become available.

Hoping to help speed that guideline-setting process along, the JDRF has worked with experts in the field to create a draft document that would set expectations and provide a pathway for research and development. The FDA needs to review that and maybe tweak it some, then get it out for public comment so that everyone can voice their opinions on it.

But there's a danger that this draft guideline document could fall into that FDA blackhole, getting swept aside and essentially putting the brakes on the years artificial pancreas project research already underway.

That's where Congress comes in. The FDA doesn't like being pressured by unhappy lawmakers, and so having them sign on to a letter urging review might make the FDA folk more willing to do what's needed. Many eyes are watching this, according to those at the top JDRF Advocacy levels.

Another imporant aspect is the federal funding for diabetes that's funnelled through the National Institutes of Health - specifically the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) that uses the money for critical research in genetics, environmental triggers, immune therapies, diabetic retinopathy, and the artificial pancreas.

With 109 new members of Congress and those veteran lawmakers facing tougher budget-tightening pressure these days, our Diabetes Community advocacy is so incredibly important. It's important to use our collective voices to not only tell our stories, but urge these elected leaders not to cut funding or let research fall by the waste-side at a time they're making critical fiscal decisions.

Both the ADA and JDRF made their way to Capitol Hill this month, with hundreds of advocates setting up meetings with Congressional members and office staff to tell our own D-stories and why this research and funding is so incredibly important.

I participated for the first time in JDRF Government Day, and had an incredible time being a part of that. More than 500 meetings were held during a two-day stretch, and I had the chance to meet with staff members for the 11 elected leaders representing Indiana - including quick-meetings with two who were in their offices. Most were receptive and interested in hearing the personal stories of living with diabetes and why this research and funding is so important to us. I urged them to keep in mind that we're not asking for money, just that we want the FDA to not let this continuing research get lost in that black hole so that it stalls and doesn't move forward.

I talked about how Lows mean I might not wake up in the morning, how research has gotten us to a point where retinopathy can be reversed, and what the lines on my CGM really mean. Even did a few blood tests while sitting there talking, and that certainly caught their attention!

For the more fiscally-conservative members, I added a fun little line that came to mind: "I'm lucky enough to have a job to pay for some of this, but my pancreas is still unemployed... and that unemployment line is growing."

Others who advocated have shared their stories, saying some agreed and others were at least excited to hear some of our personal D-Life stories.

That advocacy continues now nationwide, at the local level. The national JDRF Grass Roots Advocacy office wants to set up local meetings with new Congress members to help spread word about all of this. They're committed to meeting with at least 60% of these newly-elected members by June 30, 2011. So far, they've met with 20%.

We can help.

Both the ADA and JDRF are great ways to help out, but you can just do this on your own as a constituent who happens to Live With Diabetes or as someone touched by this chronic condition.

• Sign up to be an advocate with the JDRF or with the ADA. You can also text the word "ACTION" to 56333 to get on board with the JDRF advocacy efforts.
• For the JDRF, you can do what I've done in the past and sign up to participate in the Promise to Remember Me Campaign, which launches in August and will connect with you with other area advocates connecting with Congress members at the local level. You may recall that I took part in this during 2010 and had a great time connecting with lawmakers representing Indiana.
Contact your Congress members, telling your story and why this is important to you. Say “Thank you” if they've been around and voted to extend the Special Diabetes Program in late 2010, and urge all members to sign the letter to the FDA. You can also ask them to take part in the informational group known as the Diabetes Caucus, on either the House or Senate side.

Together, we can all make a difference. Stand up. Use your voice. Please. It's important, and we each have the power to make this happen.

4 comments:

Reyna said...

Wonderful. I am inspired. I already take part in a few of these programs Mike, but I feel the need to do more thanks to you K-2 and Hallie. You are a Blog-Star my friend.

Scott said...

I'm glad you were able to represent the diabetes online community in Washington this year; you were an excellent representative!

Hallie said...

Woot! Awesome job! It was so exciting to be a part of this, wasn't it? I love all your links and all the ways we can get involved and make a difference! I just may do the same thing.... Promise was a wonderful experience and I'm ready to do it again! So glad we got the chance to meet you in person!!

Heidi / D-Tales said...

I already do a lot on a local level with JDRF and the ADA, but reading all these posts about Government Day is motivating me to do more. We all need to do our part, and as you said, together we'll make a difference. Thanks for all that you do!