A new patient-led organization has sprung up to help the grassroots diabetes community lobby effectively, with the goal of making advocacy on federal and state policy issues easy for the average PWD (person with diabetes).
It's called the Diabetes Patient Advocacy Coalition, or DPAC for short, launched just before the big annual meeting of the American Diabetes Association in Boston, and spearheaded by well-known Diabetes Online Community (DOC) activists Bennet Dunlap and Christel Marchand Aprigliano.
"Joined by other diabetes patient advocates and forward-thinking companies, DPAC seeks to ensure the safety and quality of medications, devices, and services; and access to care for all 29 million Americans with diabetes," their website explains.
"We want to be the lobbying arm for patient advocates, especially when there are gaps in advocacy coverage," says DPAC president Bennet Dunlap, who's not only a D-dad to a pair of type 1 kids but also a type 2 himself. "We've heard so many people say, 'I'm willing to engage, but it's so difficult'... Well, we want to make this easier for them to raise their voice."
How exactly will they make it easy?
We’ll keep track of who your elected officials are, which official is on what committee, issues that have the potential to hurt or benefit our community, what bills will make a difference in our lives, who has cosponsored what bill and more.
We let you know why it's important to act right away, then give you the means to do so quickly through a series of clicks to effectively share your voice with policy-makers.
DPAC will focus on three categories -- Access, Quality, and Safety. This covers topics such as CGM access for those on Medicare, addressing the risks of faulty glucose monitoring equipment and dangerous infections in clinical settings, and making sure that meters and strips on the market are safe and accurate.
It's specifically setup to be a 501(c)(4), which is a different kind of non-profit than the more common 501(c)(3) organizations that are able to raise money but not get involved in government lobbying activity. That's a drawback to some of the big guns, like JDRF and ADA and even our friends at the Diabetes Hands Foundation (DHF), who run outstanding campaigns and advocate, but are prevented from lobbying directly on legislative issue.
Christel tells us that no organization in the D-world currently does anything like what DPAC plans, specifically targeting state and federal lawmakers on key diabetes issues. DPAC will monitor these issues, and rally advocates when and where needed, to assure that decision-makers are aware that our D-Community cares about these things and has our eyes on them.
"We have no interest in re-creating the wheel... this allows us to complement all the other great organizations and campaigns that are out there," Bennet says. "Advocacy that constitutes lobbying is problematic, so we wanted to take those problems away."
Bennet is no stranger to D-advocacy, being a key force behind the Strip Safely campaign that highlighted issues of test strip and meter accuracy and successfully motivated the FDA to begin connecting with our D-Community on that topic over the past few years. Our friend in the Philadelphia area is also a diabetes blogger at Your Diabetes May Vary and does other important work with the Diabetes Hands Foundation and others in the DOC.
His partner in DPAC is no stranger to us, either: Christel Aprigliano was a two-time winner of our DiabetesMine Patient Voices Contest and has become a community leader in recent years -- organizing the first Diabetes UnConference early this year and already planning for two follow-on events in 2016. As many of our followers likely know, Christel blogs over at The Perfect D. She has a background in managing non-profits, so this is right up her alley (although not officially related to her other org, The Diabetes Collective.)
The two say they plan to bring in other patient voices as advisers, along with industry and other D-folk.
In terms of what they'll tackle first, they point to issues in the past year in Arizona, where lawmakers considered changing insulin pump access so that young adults -- particularly those in the transitional college years -- would lose their coverage of insulin pump and supplies; and California, where the state was looking at changing its law on sharps containers in a way that would have spiked costs but not brought any meaningful safety benefits.
In both cases, the D-Community ralled and raised our collective voices on those issues. DPAC thinks those situations are case studies on how this can occur on a widespread basis. The same goes for glucose meter accuracy, engaging with the FDA, the #Vote4DM campaign aimed at diabetes education and related legislation, and the focus on FDA's new Medical Device Data Standards (MDDS), which garnered hundreds of public comments to the FDA. All of these topics got many in the DOC tuned in and ready for action.
"What we saw... is that if we get the right people engaged at the right time, we (the patient community) can be a very significant player and effect change on these issues," Bennet says.
DPAC would like to help coordinate a unified voice, instead of myriad organizations creating separate campaigns and initiatives for each of these topics, as is the usual case.
Christel tells us they're using CQRC Engage, a software platform designed to help advocacy groups track key issues and quickly set up Calls to Action to the right targets. They'll also be able to provide feedback on what D-advocates are doing and what's happening as a result, so that they can quantify how patient voices may be influencing issues. For example: If a particular Congress member or decision-maker supports a piece of diabetes legislation being tracked, that will be shared publicly.
As noted, they hope to make it easy for PWDs to connect with lawmakers online, and provide pertinent info like what questions you might ask, or whether a particular policy-maker has already taken a position or voted a certain way on the issue. Instead of organizing "days on the Hill" like other bigger orgs, DPAC will focus on virtual advocacy channels or in-person meetups at state lawmakers' or Congress members' offices, where they are sure to get meaningful face time with these decision-makers.
Bennet says they'd also like to continue the FDA virtual conversations that took place twice in 2014, and if possible organize similar webinar sessions with others in decision-making roles, like the Center for Medicare and Medicaid Services (CMS) that's in the hot seat on the Medicare Covers CGM access issue.
To help influence decision-makers, Bennet and Christel hope the DOC and beyond will make these issues personal -- by sharing our stories, as much or as little as we might want on a particular topic: How does the issue effect our real lives with diabetes? What do we want changed? And what can policy-makers do about it?
"So much of this is like diabetes itself," Bennet says. "We know some results will be out of whack, but over the next quarter we can improve our numbers or A1C by changing what we eat, or riding a bike a lot more. Incremental improvements are meaningful. Now, we need to concentrate on incremental improvements in official policies for diabetes."
Great people, and a great cause! We hope to hear more soon from @DiabetesPAC.