sum musings

August 30, 2012

Avenues for Patient Advocacy

By Kerri Morrone Sparling

Advocacy comes in as many shapes and sizes as the advocates themselves, ranging from rallying congressional support in Washington to simply telling a friend about your blood sugar result over dinner. Just as with managing diabetes, there aren’t any hard and fast rules about what diabetes advocacy looks like. Someone trying to raise awareness for diabetes might not even have the condition, but might be speaking out on behalf of their child, spouse, or friend.

“But I have no idea where to jump in,” a friend said to me over coffee the other day. “There’s so much that it feels like I’m ‘supposed to do’ that I end up with that whole paralysis by analysis sort of thing.”

It’s true; with all these diabetes blogs, fundraising walks, speakers, and meet-up organizers, there's a lot going on in the world of diabetes. But being an advocate for diabetes doesn't mean you have to blog or attend events or raise thousands for walk teams. You can raise a lot of awareness in what may feel like the smallest of ways, but it can make a real difference for just one person. And one person is all it takes.

As with anything else, you need to do what moves you. These are not the only ways to become more involved in diabetes awareness initiatives, but they might serve as a jumping-off point for you:

Walk for awareness. Every year, the JDRF and ADA hold fundraising and awareness walks all across the country, letting families and friends assemble teams to help their loved ones with diabetes. These walks are excellent opportunities to make advocacy a family event, get your body up and moving, and also to meet other people with diabetes in your area.

Influence the FDA. With more and more medical devices and treatment options being researched and designed by companies, people with diabetes and their families are raising their voices to help move these therapies forward. The FDA website lets you track progress on different diabetes initiatives, like the artificial pancreas, and allows public comments on draft guidance documents within 90 days of their release. You can also assemble a Citizen Petition, which is another way to “influence the way FDA does business [by petitioning] the agency to issue, change or cancel a regulation, or to take other action.” Patient voices need to be heard in this arena, since these devices ultimately end up in our hands and on our bodies.

Get involved in government. Now, more than ever, we need to flex our muscle as a community and make our voices heard. If you’re comfortable connecting with your local lawmakers, reach out and voice your concerns about diabetes issues. You can find contact information for your Senators here and your representatives here. See if they’re part of the Congressional Diabetes Caucus, whose purpose is “to educate members of Congress and their staff about diabetes and to support legislative activities that would improve diabetes research, education and treatment.”

Embrace social media. The web is bursting with resources for diabetes outreach, from blogs to Facebook to Twitter. You can read diabetes bloggers, join diabetes communities like Diabetes Daily or TuDiabetes, or participate in diabetes-centric Twitter chats like #dsma. Like diabetes, the Internet is awake and active at all hours, so you are never truly alone. Even if you don’t want to create content, you can read and take those online discussions offline to your friends and family.

Be fueled by fitness. Exercise and diabetes go hand-in-hand… or at least they should. If you’re looking to find workout buddies who understand the nuances of diabetes, tap into exercise and diabetes organizations like Insulindependence to find support, community, and to get your body moving.

Don’t just look for local support, provide it. While the Internet is wonderful for connecting people, there is something so amazing about sitting at a table with another person with diabetes – someone who “gets it.” Tap your local ADA, JDRF, or endocrinologist’s office to see if you can find others living with and caring for diabetes in your neighborhood, and set up in-person support meetings! You can work with your local medical professionals, or you can take matters into your own hands and have an informal meet-up at a coffee shop.

Think globally. Diabetes is occurring all over the world, but you can help make a difference from home. The Life for a Child program is a sustainable support program where individuals and organizations can contribute monetary or in-kind donations to help children with diabetes in developing countries. The Insulin for Life program collects in-date, unopened, and surplus diabetes supplies and distributes them to recognized organizations. While we need to take care of things at home, we also need to remember that the global diabetes community needs help.

Every voice matters, and every person living with diabetes or caring for someone with diabetes has a unique way of sharing, connecting, and inspiring the diabetes community as a whole. Simply touch one life and you’ve made all the difference.  

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