The future of healthcare reform remains ever unclear.

Healthcare KeyboardAt one moment, emotions are running high as it seems all manner of protections, access and affordability are on the line. Then suddenly, Congressional efforts are stalled and all but dead, after the Republican Party was unable to muster the needed votes in the U.S. House in late March for its proposed American Health Care Act (AHCA) of 2017.

Meanwhile, our Diabetes Community is left holding the bag with a healthcare system that is clearly broken, and could change at a moment's notice for better or for worse.

So with all this uncertainty, just how are the leading diabetes non-profit orgs focusing their advocacy efforts on healthcare reform?

We reached out to the following groups to learn their approach. While not all provided much insight beyond simple talking points, we appreciate the effort they made to reply in such a busy time.

{NOTE: Clearly, opinions vary on how healthcare should be handled; our goal here is to simply shed light on the urgency of this issue, and the work these groups are doing on behalf of people with diabetes.}


DPAC Informs Patients

DPAC logoAs a refresher: the Diabetes Patient Advocacy Coalition, or DPAC, is a 501c4 lobbying group founded in 2015 by patient advocates Christel Aprigliano and Bennet Dunlap, aimed at empowering our community to better collaborate, advocate and raise our voices at the state and federal levels. It's a sort of one-stop hub offering key resources focusing on access, affordability and quality issues and among other things. Their site allows PWDs to share stories, connect with state and federal lawmakers in various ways, and generally get more plugged into important advocacy topics.

"I've never watched so much C-SPAN," says DPAC leader and longtime type 1 Aprigliano, about the current frenzy.

Specifically, she says they now spend every morning reviewing multiple sources on healthcare policy and using social media to help ensure that PWDs understand the urgency and continued policy advocacy needed to keep our community safe and insured.

"Like any other complex issue that has budget implications (both nationally and personally) and is highly emotionally charged, we have to focus on the facts and what the Congressional Budget Office (CBO) analysis showed the nation. Small budgetary short-term gains are offset by the loss of insurance options for millions of Americans and a sharp shift in how the insurance market will provide affordable care," Aprigliano says.

She says most of DPAC's effort has been on ACA "repeal and replace" efforts in Congress, specifically educating and offering ways for our D-Community to take action and raise our collective voice. The group is also releasing a new, first-of-its-kind app for the D-Community to engage in advocacy through smartphomes, both iOS and Android.

"It's essential that we recognize that ACA was not perfect and that individuals did not always view ACA as a good plan. It wasn't perfect, but it was a beginning and there is room for improvement if there is bipartisan collaboration and support."

After the House failed to take a vote on the AHCA on March 30, she told us: "The no vote is a reprieve, but nothing is final when it comes to our healthcare. DPAC will continue to put efforts towards ensuring all 29.1 million people with diabetes and those who are impacted by federal and state healthcare policies are covered with access to affordable healthcare. Our campaigns to protect those with pre-existing conditions and ways to reach policymakers will continue."

And how many hours has DPAC spent on this, specifically?

"I can't count the hours, because not only is it part of what DPAC does, but it's personal to me, so I've had a few sleepless nights," Aprigliano said.

Kudos to Aprigliano and DPAC for helping lead the patient community voice on this complicated topic.


JDRF Bombards Congress

At the JDRF, Advocacy and Policy VP Cynthia Rice says this has been a busy couple of months -- especially with the group's Government Day that took place Feb. 26 to March 1.

JDRF logo"After many hours of outreach to Congressional offices, our volunteers secured and held nearly 500 Congressional meetings," she says. "In those meetings volunteers shared our healthcare principles and urged members to take the needs of the T1D community into account during consideration of any upcoming health care legislative action."

In January, the JDRF released its Advocacy Agenda for 2017 on healthcare reform. That included thanking and urging Congressional members to renew the Special Diabetes Program (SDP) by the end of 2017, which provides $150M per year in T1D research funding. For those who couldn't attend Government Day in D.C., JDRF has created an online action portal to share the organization's healthcare reform principles with Congress.

Since the beginning of March, Rice says the JDRF has also collaborated with about a dozen other patient organizations -- beyond just diabetes -- in sending a joint letter to Congress about healthcare reform.

Most of the JDRF's resources are volunteer hours -- from time spent around the country contacting lawmakers to other actions, while the chapter-based time is nearly all volunteers. In DC, there are four groups of advocacy staff: grassroots who organize volunteers, legislative who work directly with Congress, regulatory who work with FDA and JDRF-funded scientists, and health policy who engage CMS and health plans. There's about 15 total.

"Our staff team (has) continued to field questions and dialogue with Congressional staff on the issue," she said at the start of April, before Congress began its Easter Recess. "We definitely had TV news on, but also watched Twitter and other social media coming out of the Capitol and used a lot of email in discussions with Hill staff to follow up on the in-person meetings we had had earlier."

Beyond the AHCA and healthcare reform, Rice also says the JDRF has been taking broader action on access and affordability issues -- aka #DiabetesAccessMatters and insulin pricing. The group has been working outside of D.C. directly with health plans, reaching out to insurers and advocating, led in part by Chief Mission Officer Aaron Kowalski. The JDRF plans to release more on those campaigns in the coming months, Rice tells us.


ADA Goes to The Hill

ADA logoThe American Diabetes Association (ADA) is swamped with behind-the-scenes activity on healthcare reform at the moment, but via a spokeswoman we did get a written response from Dr. LaShawn McIver, their Senior VP of Advocacy.

She tells us they're highly concerned that many protections for PWDs that they had fought to get included in the Affordable Care Act (aka Obamacare) years ago are now under threat. Those include core protections for people with pre-existing conditions and coverage until age 26, for example. Much of the org's longstanding efforts and positions can be found on the ADA's advocacy site online.

"Within the Association, we formed a cross-functional team of staff at all levels including our federal and state government affairs team, public policy, grassroots and communications teams to protect and defend the ACA. We also worked closely with coalition partners to advocate with a united voice on behalf of people with chronic diseases. The team includes people regularly meeting on Capitol Hill, as well as team members at the office ready and poised to respond nimbly to the rapidly changing political environment. We stand ready to engage on behalf of people with diabetes and to activate our network of more than 480,000 advocates to raise our voice on Capitol Hill," McIver writes us.

How much overtime invested, and stress levels experienced? We can only assume.

The ADA statement points out: "The team worked the hours needed to conduct critical advocacy on behalf of people with diabetes, including long nights and weekends. As negotiations moved in Congress, staff was on call to review, strategize and respond to the rapidly changing debate, process and plans."

McIver was clear that the ADA believes passage of the AHCA would be "devastating" for PWDs and is doing all it can to urge Congress to not just repeal the current law, but increase protections for our D-Community.

"While we are pleased the AHCA did not move forward two weeks ago, we remain engaged and prepared to defend people with diabetes from the continued threats of loss of health coverage and protections."

ADA held its annual Call to Congress while all of this debate was in full bloom at the end of March. The organization published a Storify social media recap of those advocacy efforts, and we also enjoyed this blog post from T2 D-peep Shelby Kincaid recapping her experience.

In its written statement, the ADA provided some key stats on participation and tactics in this round of Congressional visits:

  • More than 180 advocates from 33 states, including adults and children living with both type 1 and type 2, as well as family members, ADA members and leaders, researchers, physicians and other healthcare providers.
  • Folks from 11 diabetes research centers were present to advocate.
  • 35 members of Team Tackle, an initiative that brings in pro football players and members of the NFL Players Association (NFLPA), were also there as part of the ADA's efforts to raise awareness of diabetes and prediabetes.
  • Presented its #MakeInsulinAffordable petition to Congress, which was launched in November 2016 and as of the time it was presented included 235,000+ signatures.
  • A total 189 House and Senate meetings were held, where the advocates and professionals shared personal stories, research information, and asked these elected leaders to support the "Association's legislative priorities."
  • "Legislative requests centered around... asking Congress not to repeal the (ACA) without a simultaneous replacement that provides at least the same protections for those with and at-risk for diabetes."
  • "Closely related, advocates asked for transparency around the rising cost of insulin and for Congress to hold hearings with all entities in the insulin supply chain to address the reasons for increases in insulin prices."
  • "Finally, advocates asked Congress to prioritize funding for diabetes research and programs, including $2.165 billion for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at National Institutes for Health (NIH), $185 million for the Division of Diabetes Translation at the Centers for Disease Control and Prevention (CDC), and $25 million for the National Diabetes Prevention Program."

"The event in Washington was only the beginning," their statement concluded. "Following the Call to Congress legislative meetings on Thursday, advocates spent Friday becoming empowered to Raise Voice in their hometowns and communities, and to meet with their local members of Congress and how to develop an engaged relationship."


Diabetes Educators and Endos: A Measured Approach

We also reached out to both the American Association of Diabetes Educators (AADE) and the American Association of Clinicial Endocrinologists (AACE).

The legislative and government affairs director for the latter, AACE, says that physicians' org "hasn't done much in the area."

AADE logoAnd the AADE's Director of Federal and State Advocacy Kurt Anderson says the educators' org took a cautious approach to speaking out on healthcare reform recently.

"It's all a bit crazy, and then it isn't," he said. "While we were concerned about what was happening, and there was certainly some danger, none of it seemed very real. We don't have the bandwidth and staff of some organizations... so while we did send out some alerts, our position was really a wait-and-see before getting members energized and mobilized. Looking back on this now, that was the right call."

In trying to analyze the AHCA and related proposals, Anderson said it was tough to figure out what the actual ramifications or unintended effects might be -- especially at the state level, where many are closely watching the Medicaid expansion issue.

The AADE did publish a position paper in early March which reflects what it would like to see happen in healthcare reform and largely mirrors their collaborative position with the Diabetes Advocacy Alliance -- a group of 22 organizations focused on the regulatory and policy environment in diabetes care. Anderson says that when developing a position on any particular legislation, it's important for the AADE to be careful and not paint it politically with a broad brush. Simultaneously, you have to be honest about the consequences it could have.

"We try to be as measured as possible, especially since our members (the nation's diabetes educators) are split and fall on all sides of the political spectrum across the U.S. Also, nothing is moving right now, and we're all kept in suspense, but we'll keep our eyes on this and react as we need to," he said.


Grassroots Advocacy & Beyond

Clearly, these professional groups aren't the only ones digging into healthcare policy and advocating certain positions. There are folks at the local level in countless communities across the U.S. raising their voices as well.

Just recently on April 1, a group of advocates in diabetes and beyond organized the March For Health in cities like Washington D.C., Seattle, WA and others across the country. Check out one great write-up by Stephen Shaul at Happy Medium on the D.C. March, Kelly Kunik at Diabetesaliciousness who was part of the NYC event, as well as other accounts from those plugged into the Facebook page.

Longtime type 1 and advocate George Huntley, who's been on the advocacy front for three decades and currently serves on the National Diabetes Volunteer Leadership Council (NDVLC), notes that whether one agrees with the path all these groups are taking or not, just standing up for patients rights is important in itself.

"You may disagree with a strategy or decision, or even a policy position, but to say they don't care or are not representing people in diabetes as best they can is just not accurate or fair. From my lens, they're trying their hearts out to make improvements for people with diabetes. Right, wrong or indifferent, it's not for lack of passion," says Huntley (who will be featured here at the 'Mine tomorrow).

Meanwhile, the ACA ("Obamacare") remains the law of the land, though no doubt it will be a continuing point of controversy.

Congress is currently on Easter Recess until mid-April, so that maybe gives advocates a chance to catch their breath. What happens next is anyone's guess, but hopefully all this advocacy pays off and makes a difference that actually helps PWDs.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.


This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.