Diabetes Advocacy 101

If the squeaky wheel gets the grease, then it’s up to the diabetes community to make more noise in 2014 and 2015 on important policy issues that could impact their health. If there ever was a time for advocacy, this is it.

Change is afoot on how the government delivers health care, and it’s important that people with diabetes have a seat at the table. In 2013, the Centers for Medicare and Medicaid Services (CMS) changed to a competitive bidding program for diabetes care products. That move slashed both prices and the number of diabetes care products suppliers. People with diabetes will have to keep a watchful eye on whether these changes also will limit their options for needed products and supplies. The implementation of Obamacare also changes the health care landscape; the new law is unchartered territory, so people with diabetes should be vigilant to make sure important treatments aren’t squeezed out by cost-saving measures. They also need to raise their voices to verify that preventive health measures mandated by the new law actually are practiced in physician offices.

Now, if you’re thinking advocacy means you have to chain yourself to the front door of FDA headquarters, think again. There are many different options for advocacy, and 99.9% of them don’t require hunger strikes or arrests. Advocacy is simply supporting a cause and seeking a change; it’s about making your voice heard.

The most effective advocates often are those on the grassroots level who are directly affected by the issue, says Arizona Congresswoman Rep. Kyrsten Sinema. Health care providers, diabetes supply businesses, caregivers, and family members of those affected also make great advocates.

“I encourage people who are affected by diabetes – as a patient, a parent, a child, a caregiver, a medical professional – to become an advocate and communicate to their federal and state representatives the challenges and successes of the condition,” she says. “It is important for me and my colleagues in Washington, DC to understand persons with diabetes as we determine coverage, payment, and treatment policies.”

Effective advocacy requires a big-tent philosophy to provide space for as many people as possible to get involved. Manny Hernandez, a diabetes advocate, president and co-founder of the Diabetes Hands Foundation, recently wrote an article detailing the importance of Type 1 and Type 2 diabetes advocates working together to amplify the message. He says that it’s alarming how often health care policy decisions are made about diabetes without hearing from those affected.

“The diabetes community is largely ‘inside a cave’. As a consequence, critical issues of access to quality care to ensure improved outcomes and avoid long-term complications are not getting the attention they need. There is, simply put, not a patient at every table,” Hernandez says.

Effective advocacy also means knowing and picking your targets. For example, there is a Congressional Diabetes Caucus with close to 350 members of the House of Representatives. Do you know if your member is part of the caucus? You can find out, and thank him or her for supporting the cause, and use that thanks as a springboard for continued conversations. If your congressional representative is not a member of the caucus, who better than you to ask for the representative to get more involved on the issue? In the other chamber, the Senate Diabetes Caucus is equally as active and supportive of diabetes legislation. Co-Chairs Senators Susan Collins (Maine) and Jeanne Shaheen (New Hampshire) are the leaders of this caucus, but would welcome more support.

On a state level, it’s good to talk to the local legislators in your community often. As state legislatures look for creative ways to save health care dollars, it’s crucial to attach facts, a face, and a fate to the diabetes issue. Advocates must be educated on the facts of the disease, including how it affects the body, treatment and care options, and the costs of receiving care. It also might be wise to emphasize the societal cost of not receiving care, as well, to help legislators see that a dollar of effective diabetes management saves thousands of dollars in health care costs.

It’s important for advocates to educate themselves on the current landscape of care for diabetes funding, says Kelly L. Close, Editor-In-Chief of diatribe, an online newsletter focused on new research and products for people with diabetes. Learning about previous levels of funding of diabetes treatment and research, advancements and challenges in diabetes care, and current patient needs will empower advocates to make a better case for support.

“If you don’t know where you are starting, you don’t know where you want to go,” notes Close.

Organizations such as the American Diabetes Association and the American Association of Diabetes Educators are a great resource for information and fact sheets, especially on a state level. Another resource is the National Conference of State Legislatures, which provides an online state-by-state list of budget appropriations and other legislation specifically related to diabetes.

Armed with information and statistics, the best way to make lawmakers take notice is by putting a face and a name to a cause. Each person with diabetes has a story, and the stories are all different. It is important to make sure policy makers know the successes and challenges of diabetes. And as the rates of diabetes among communities of color continue to rise, it is important that advocates communicate the needs for greater support for minority and disadvantaged communities that are being underserved.

Impress upon your elected officials the consequences of not providing good care to people with diabetes. Explain how people with diabetes are societal contributors when they are healthy, but account for millions of dollars in lost productivity when they have to miss work. Children, too, miss meaningful days of their education if they are in a diabetic crisis. Caregivers of diabetes patients also are impacted, and can attest to the care and emotional needs of caring for the ones they love.

While a meeting or a visit to a state capitol may last a day, there are ways to continue to promote change from afar. The rise of news channels and social media dedicated to health, news, and economics gives those interested in any issue a way to get the point across to a large number of people, who then can become advocates and contact lawmakers. Think of it as viral advocacy!

Advocacy comes in many shapes and sizes. For some, it’s a full-time job, while for others it’s the occasional phone call or email. What’s important to remember, though, is that no one can advocate for you as effectively as you can for yourself. Each voice counts in helping inform lawmakers about the needs of the diabetes community.

“If you ask most legislators what are the top concerns of their constituents in connection with diabetes, they will tell you their phones are not precisely ringing off the hook. It’s upon us to change this,” says Close.

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Danielle Turnipseed, JD, MPP, MHSA, has been involved in healthcare for more than 15 years. After working for two United States Senators where she was a health policy advisor and legislative assistant, Danielle returned to school to earn her law degree. She has written on a number of policy issues related to health, and met with many diabetes advocates, providers, and pharmaceutical companies in her previous position. A resident of Silver Spring, Maryland, Danielle enjoys volunteering and working on civil rights issues.

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