Congress is now on recess through August until its return to session after Labor Day, but the country is still reeling from a dizzying display of Congressional activity in late July.
That's especially true for those of us in the Diabetes Community, still grappling with the contentious debate about healthcare overhaul. Fortunately, there's also been a flurry of diabetes advocacy on Capitol Hill bringing a lot of eyeballs to important issues for PWDs (people with diabetes).
- Major pushback by the American Diabetes Association and other national patient advocacy orgs on the Senate's attempts to repeal (but not replace?) the Affordable Care Act (aka Obamacare).
- Numerous discussions on drug pricing and protests outside the Capitol Building and Senate offices that included DOC folk advocating on #insulin4all.
- JDRF's biannual Children's Congress that took place July 24-27, bringing hundreds of kids, families, adults and celebs with T1D to DC, urging Congress to renew the Special Diabetes Program for research and other related funding as it considers national budget priorities this year.
- A government hearing on Medicare policy change and how the competitive-bidding process is hurting PWDs.
- Veterans with diabetes are watching nervously as the House finally voted in favor of boosting VA health care funding by $2.1 billion, but the Senate still must approve the measure.
Seriously, anyone who isn't experiencing some level of fatigue just trying to keep tabs on all this must have stamina of steel! In fact, experts are pointing out that trying to follow all this tumultuous Congressional activity adds more stress to people living chronic conditions -- thank you very much! (NOT).
To help you sort through it all, here's an update on key diabetes-specific healthcare advocacy efforts underway now:
Talking Medicare and Competitive-Bidding
On July 19, D-Advocate Christel Aprigliano who leads the Diabetes Patient Advocacy Coalition (DPAC) testified before the Senate Energy and Commerce Committee, focusing on Medicare policy change -- including the competitive-bidding process that's been proven to be harmful to people with diabetes. To us, it's the "Flint Water Crisis of Diabetes."
With only about five minutes to speak, Christel was clear and concise and managed to cover a lot of information, including a recent Diabetes Technology Society study showing that 12 of the 18 glucose meters currently available in the U.S. are not sufficiently accurate.
“I felt like I wanted to speed up to get all of the things I wanted to say in there, but that wasn’t needed. There were some great questions from Congress members after the prepared speech that helped bring to light the fact that diabetes has serious complications when it’s mismanaged, and if you have inaccurate meters, that’s part of the problem. I’m hoping they walked away with understanding that they play a part in our diabetes management for people on Medicare, and help save money as well as keep people safe,” she told us.
The speaking opp materialized after Christel spoke last summer at a Congressional Diabetes and Black Caucus briefing about competitive-bidding, and showed that DPAC is becoming a leading voice on Medicare policies issues for diabetes. She was one of 11 advocacy speakers that day, and Christel says they overlapped on many points – from lab results and mobile apps to home-based care, diabetes technology adequacy and access, and more. All PWDs are touched by these issues, she notes.
Christel says she wore her Dexcom CGM and OmniPod patch pump visibly on her arm, so the lawmakers could see those D-devices and understand how they are always a part of our lives.
In the days before that hearing, Sen. Diana DeGette from Colorado introduced legislation aimed at improving the competitive-bidding process for PWDs: H.R. 3271, which calls for better access to accurate meters for those on Medicare, and safeguards so PWDs won't be switched to less-accurate, questionable meters.
“This is the enforcement that was originally supposed to happen with competitive-bidding, but did not,” Christel says. “It’s the rules on anti-switching and 50% of available meters, so that seniors can get and use the meters they and their medical professionals are the most comfortable with and can trust. This is about plugging the holes and filling the gaps in competitive bidding.”
Similar legislation was passed during the prior legislative session, but didn’t get enough support and is now being re-introduced.
After the July Senate hearing, Christel says she met with Rep. Gus Bilirakis (R_FL) who’d reached out to her about this Medicare issue. He had co-sponsored legislation for CGM Access and establishing a National Clinical Care Commission; two efforts that didn’t get passed in the prior session. They’re now planning a local town forum within his local District, to raise awareness about diabetes in seniors and more broadly about D-issues happening on Capitol Hill. Christel says she’s also meeting with other Congress members to discuss the Medicare policy changes discussed during the hearing.
Establishing a national care commission “would be a small win that would have such huge wins for people with diabetes on Medicare,” Christel says. “We all know that what happens when Medicare trickles down to Medicaid and private insurers, so it’s about thinking larger. We need to just take one more step, to make sure people in Congress know that diabetes isn't going away, and neither are we.”
JDRF Children's Congress (#JDRFCC17)
Every two years since 1999, a mass of T1D kids and families gather in DC to speak to elected lawmakers and their staffers on pressing diabetes topics. This year, the JDRF's Children Congress was held July 25-27, with activities ranging from an official public hearing before a special Senate Aging committee to numerous individual meetings on the Hill.
Their main focus, per the JDRF agenda was to urge a renewal of the Special Diabetes Program, which provides a critical $150 million (!) in federal funding for key diabetes research and programs that help minority Indian populations. It expires on Sept. 30, 2017, and like the years before, we need this program to be renewed in the coming months before it's too late. This funding is key to supporting work on important diabetes treatments and technology and cure research that have been going on for many years -- including helping to make CGM the keystone of care it is today, and helping us pave the way to closed loop technology like the Medtronic 670G.
Two other legislative priorities the advocates touched on were continued research funding of the NIH and FDA, and broader healthcare reform principles the JDRF is behind -- no coverage denials or higher insurance premiums for pre-existing conditions, children can stay on parents' insurance until age 26, and essential health benefits should be easily renewed, closing the Medicare Part D 'doughnut hole.' This article on JDRF Advocacy provides a good recap of everything the org has been advocating on with the federal government.
In all, 160 kids and families and advocates attending this #JDRFCC17. While we adult T1Ds can sometimes gripe about how JDRF always uses young faces for publicity, there's no doubt that having kids present always makes a big difference when it comes to advocating on Capitol Hill. And adults with T1D were well represented, from the "regular" folks to higher-profile celebs with diabetes.
For instance, actor Paul Sparks, most recognized from roles in the Boardwalk Empire and House of Cards series, spoke to the special Senate Committee on Aging along with other D-advocates and the NIH director, sharing his story about being diagnosed in his 20s in 1999 and his experiences with CGM and Afrezza inhaled insulin. He did a good job tying it all together with why funding is so important.
While not everyone may agree on JDRF's current messaging or brand of advocacy, the org is clearly working hard to raise awareness about diabetes with lawmakers.
Healthcare Reform and Drug Pricing
Efforts at Obamacare repeal top the headlines these days, and no matter where you stand on the political spectrum, you have to be concerned if you're a person living with a chronic health condition.
In one of the many head-scratching ironies that really makes us sick, the Senate moved forward on repealing healthcare for millions with disabilities on the very anniversary of the Americans with Disabilities Act (ADA) that was passed on July 26, 1990. Disgusting, honestly. Thankfully that first attempt didn't pass, and then a dramatic 2 a.m. vote on July 28 shot down a so-called "skinny repeal" that would've rolled back parts of the ACA without a replacement.
The American Diabetes Association has made up a pretty nice infographic on how repeal would impact PWDs, and it's worth checking out.
We were proud to see DOC friends Hannah Crabtree (@Lollydaggle) and D-Dad James Wedding (founder of the Nightscout Foundation) among those stepping up -- literally -- to raise their voices in protest of changes that could hurt PWDs and using the #insulin4all hashtag in their messaging.
"Between Tuesday and Friday last week (July 25-28), my only activities were eating, sleeping, working and protesting. With Trumpcare passage seeming like a forgone conclusion, it truly felt like my life and the lives of so many others were on the line. While I wasn’t sure my actions would make a difference (spoiler alert: they did), I wasn’t going to go down without a fight," Holly wrote.
"I’m not a professional advocate or protestor. Usually, I’m not very spontaneous. If I’m going to go out and protest, I like to be part of an event that is already organized. But, on Tuesday, I headed to the Capitol with no plan or agenda. I figured an earlier afternoon rally would already be over. I figured worst-case scenario, I’d hang out at the Capitol with a sign I had discreetly made at work earlier in the day. Even if it was just me and my sign, it was better than doing nothing."
What started out as just Hannah on her own turned into an impromptu gathering of advocates from across the spectrum to protest the Congressional activity. Hannah says she shared her D-story and how her own T1D mom died, and heard so many different health stories from cancer survivors and beyond.
On the night of the ACA "skinny repeal" vote, Hannah says she heard several speeches talking about diabetes and how costly insulin is -- her and fellow D-advocates who came out there to protest held her handmade #Insulin4all sign up as high as they could, so the world could see.
When they finally heard the conclusive vote striking down the skinny repeal, emotions were high, ranging from "hope, despair, frustration, passion and pride, laughter and tears."
She believes this latest round of repeal legislation was only stopped because of grassroots advocacy, and it's that kind of local action that makes the most difference.
"Cynicism and feeling as if your actions don’t matter can stop advocacy before it has a chance to bloom. Actions do matter. It only takes one person to make a statement. Everyone has a different brand of advocacy and mine will always be grassroots and making noise in and around DC," she says.
All we can say is THANK YOU Hannah, and all who showed up with bold signs and voices to advocate for change.
Veterans with Diabetes, Too...
While it may not have been capturing the same kind of attention and headlines, veterans' care was also an issue in the federal legislative bodies recently. Our DOC friend Tom Goffe, a veteran with type 1 diabetes from North Carolina, wondered on social media where all the D-advocacy was when it came to these issues affecting a sub-section of the Diabetes Community? Tom's been living with T1D and two little-discussed complications for more than a decade now -- gastroparesis and diabetic dysomotility. Both worsened a year ago, and due to issues in coverage and the debate over a program for veterans' care, Tom has struggled to get the treatments he needs.
"While millions of advocates, insurers, health care industry lobbyists and patient organizations were locked in a legislative ‘cage match’ over the future of the Affordable Health Care Act, another health care battle was taking place on Capitol Hill: funding for the Veterans Choice Program, established in 2014 to provide private care to millions of veterans who cannot it from the Department of Veterans Affairs," Tom writes.
"Notwithstanding the fact that the number of PWDs served by Veterans Choice (health benefits program) is larger than the population of Detroit or Seattle, the silence of patient advocacy organizations, professional organizations focused on diabetes... and the Diabetes Online Community was total."
The VA-related legislation got House approval at the end of July and is expected to get Senate approval before the end of the August recess, with a presidential signing following that.
And this should be a big deal for the major national D-Advocacy organization, Tom points out, noting that established orgs like JDRF, ADA, AADE, DPAC weren't visibly involved, though he was surprised as that's typically not the case. He did his part by contracting his Congress-folk and speaking up for himself and his veteran compatriots. But he wonders if individual voices are enough?
"Admitting that everyone with any interest in health care was obsessed with the ACA fight, I was surprised that the advocacy organizations who receive so much money and support from people with diabetes were seemingly unable to walk and chew bubblegum at the same time. Working on a legislative staff and for a lobbying firm has taught me that you cannot solely focus on one issue at a time."
Tying It All Together
It's a lot to take in, as we said, and many of us are feeling the burnout in watching and balancing all of this.
"In general, advocates are suffering from advocacy fatigue. Everybody's been at 110% and trying to do what they can in all of these healthcare spaces, but everyone's exhausted," DPAC's Christel says. "We need to be able to pull back and take a breath, because it's not going to stop. That's why we all need to be smart about what we're asking for and doing in the spirit of advocacy."
We have so many voices and diverse viewpoints in this great community of ours, and it's so important to recognize that each POV is important. At the same time, only by working together can we truly make a difference.
As a patient, there are apps to pester Congress to voice your opinions, and groups like the Patient Advocacy Foundation (PAF) that offer information about where you can donate, volunteer and march. The hope is that these many individual efforts, along with professional nonprofits pushing their agendas, will combine to influences policy change.
Often, as Esquire magazine wrote recently, "it begins in the streets" with grassroots advocacy, so never feel that your one voice doesn't matter. It does.
We extend our thanks to everyone raising their voices, in whatever ways they see as appropriate.