Now that we're post-election and prepping for a massive political landscape shift, many in the Diabetes Community are wondering what will happen on the healthcare and medical innovation fronts. That was the topic of a recent meeting in Washington, DC, called "Tackling Diabetes: Solutions to a Complex Disease," which spanned only about two hours on Dec. 6, but was a rapid-fire, Q&A-style discussion on a wide range of topics relevant to both type 1 and type 2 diabetes.
The meeting was hosted by The Hill news site and sponsored by Pharmaceutical Research and Manufacturers of America (PhRMA), bringing together lawmakers, medical experts, Pharma folk and national health advocates.
Some of the questions posed were:
- How can we improve the management of type 1 diabetes?
- What is being done to prevent T2 diabetes and ensure access to quality care?
- What role can policy makers and health experts play in early identification and improved outcomes for at-risk and underserved communities?
Huge questions, no doubt.
We tuned into the meeting remotely, and it really struck us as a well-balanced representation of policy and politics relating to all types of diabetes, prevention of T2 and prediabetes, and also the personal impact of medtech and biopharm advancements.
Note that the third portion of the meeting, which featured leaders from trade groups AdvaMed (medtech) and PhrMA (bio-pharmaceutical research) was where the personal aspect came in, with the two trade group leaders being D-Dads themselves of children with T1D. We appreciated their insights on new tech and treatments, and what they hope to see on the legislative side in the coming year.
Although the ADA and JDRF weren't on the agenda as speakers or panelists, we were happy to see they attended the meeting, as did the D-consultancy Close Concerns. We also were excited to see DOC (Diabetes Online Community) advocate Hannah Crabtree (@lollydaggle) attending the meeting in person, and live-Tweeting throughout. Her report on the meeting is included below.
But first, here's our recap of some key points from three influential panelists:
PhRMA's Dr. William Chin - has a son diagnosed with T1D at age 15 and serves as the trade group's executive VP of science and regulatory advocacy. He discussed the need for collaboration, as well as pointing everyone to a new report about innovative new medicines titled From Hope to Cures that PhRMA distributed to all of those attending.
Congressman Tom Reed (R-NY) - co-chairs the Congressional Diabetes Caucus and has a son with diagnosed with T1D seven years ago. He is also part of President-elect Donald Trump's transition team.
- On replacing the Affordable Care Act, he said: "We all join in effort to make sure healthcare is affordable and accessible to all people. It must include the cost equation, not just insurance reform, as that's the heart of the issue missing from ACA." He sees the continuation of coverage for young people up to age 26 on their parents' policies and coverage of those with pre-existing conditions like diabetes as "great cornerstones of a reform package" being formulated by Republican leaders.
- Medicaid and Medicare will be huge topics in this, and Reed says he plans to make sure diabetes is central to the conversation. He sponsored the Medicare CGM Access Act (mandating coverage of continuous glucose monitors) and says he sees this as "common sense," and he's also a co-sponsor of the National Clinical Care Commissions Act, that calls for better coordination of care for "metabolic or autoimmune disease, diabetes, or complications caused by such a disease."
- Reed said he and D-Caucus Chair Rep. Diane Gillette (who also has a personal diabetes tie) spend a lot of time educating colleagues on diabetes -- from dispelling misconceptions and offering basic information to more complex advocacy issues. "I will challenge any of my colleagues that we have to invest in diabetes research and treatments," he said, emphasizing both public and private partnerships as well as government agencies.
Rep. Robin Kelly (D-IL) - chairs the Congressional Black Caucus Health Braintrust, and in 2015 issued what's known as "The Kelly Report" on Health Disparities in America. His main points were:
- Diabetes is one of the top 10 diseases people die from, and African-Americans lead there with 8 out of 10 of those diabetes-related deaths. There's not enough funding for disease prevention across the board!
- The healthcare field not diverse enough, and that's an issue because people tend to do better when they have medical professions who "look like them." It's also too costly for aspiring minority HCPs to go into medicine, compounding the issue that many PWDs and minorities can't afford care.
- If she had a "magic Congressional pen" to fix issues, she'd focus on: more investment in research and clinical trial access for minorities, because there's a cultural disconnect; better access to healthcare for PWDs to close disparity gaps; basic education about diabetes and how it can be culturally addressed on the prevention front; and diversifying healthcare provider networks, which she said may be a "generational fix" that just takes time.
Drug costs came up in the questioning periodically, though they weren't a focal point of this meeting. At one point, Rep. Kelly remarked that she didn't think CEOs of Pharma companies should be "condemned" for high drug prices, but she said it's fair and necessary for them to be called before Congress to answer questions and engage in dialogue on this issue.
And now, we're happy to hear directly from Hannah Crabtree, who attended the meeting live.
She's been living with T1D for 22 years and actually lost her mom, a longtime T1D, about a decade ago due to diabetes complications. As a result, she's been pretty vocal on insulin access and making sure T1 treatment gaps don't lead to premature deaths for other families. Relatively new to the DOC, Hannah's created a diabetes advocacy hub called Our Circle Matters.
An Advocate's POV: Not Enough Patient Voice
As a person with diabetes who just moved (back) to the DC area, I’ve been interested in attending more diabetes related policy events to share my voice and learn more about the issues in our community, including last week's session “Tackling Diabetes: Solutions to a Complex Disease” hosted by The Hill and sponsored by PhRMA.
Many panelists voiced personal connections to Type 1 diabetes, which was comforting. However, despite these personal connections and patient advocacy being touted on the panel, patient voices were silent. As far as I’m aware, not a single person involved was personally inflicted themselves with either type.
Unfortunately, there was no opportunity for individuals with diabetes to share their experience or solutions (trust me, we all have ideas!). Panels and presentations are great media, but when discussing solutions to a disease, there needs to be representation and input by those who are inflicted with said disease. This should be best practice for every diabetes-related event. Personally, I would have loved the opportunity to ask difficult questions.
While I understand the importance the type 2 issues discussed, I’m choosing to focus on the issues effecting T1D that I’m most familiar with. Given the experience of the panelists, many of whom have children with T1D, I was not surprised to see the focus of T1 solutions hinge entirely on advancing technology, eventually towards a cure.
AdvaMed CEO Scott Whitaker made the very bold statement that with enough investment into innovative companies, we could cure diabetes in the next few years. He also spent a decent chunk of time praising the closed loop.
My POV is that technology is life-changing, but currently only to a small fraction of PWDs (people with diabetes). I was disappointed (but again, unsurprised) this was the panel’s angle. This event was supposed to discuss solutions for “tackling diabetes,” not for “tackling diabetes for those with privilege."
The treatment gap for T1D is severe. In our community, some people are spending thousands for cutting-edge technology while others rely entirely on "Pay it Forward" efforts just to get the insulin they need to survive. This is personal for me. As someone who has lived on both sides of the spectrum, I know how lucky I am to have access to technology now and how devastating life was when I did not. Technology did not help my family when my mom was rationing insulin because she felt our family couldn’t afford it for two T1s, or when she was battling depression which exacerbated her complications. For us during those times, tackling diabetes had nothing to do with technology and everything to do with affordable access.
In the U.S., only about one-third of PWDs are on insulin pumps and only about 1/7 are on continuous glucose monitors (CGMs). Pump/CGM integration, faster insulins and smart pens will only be solutions for those who can afford them. PhRMA's Steve Ubl referenced their graphic proudly: “There are 171 new medicines in development for treating diabetes!” But Steve, how many of these 171 will be affordable for those who need them?! If advanced technology is only available to a fraction of PWDs, I honestly don’t think we can call it a “solution” for tackling diabetes.
I would have liked to see the panel discuss solutions that would help all. We PWDs are an incredibly diverse group; we all know diabetes does not discriminate. In fact, we may only have one thing in common: the need for insulin in order to survive. Why not discuss a simple idea that will impact 100% of people dependent on insulin: the treatment of this drug as a human right, and ensuring all who need it have affordable access? Now that would have an immediate, profound impact on “tackling diabetes.”
Acknowledging the Insulin Prices Elephant
The moderator for part of the program, Reid Wilson of The Hill, did question the panelists about why insulin costs are rising so sharply and what can be done about this.
Unsurprisingly, Ubl mentioned marketplace pressures, including the leverage Pharmacy Benefit Managers (PBMs) have to receive certain prices. PBMs definitely have responsibility in the pricing problem. What was missing from this discussion, and other similar discussions recently, is any sort of ownership from the pharmaceutical industry. The pharmaceutical industry needs to take responsibility for rising prices as well, and propose internal solutions that will have an impact on lowering list prices. Ubl was also adamant that “net price” (cost to the patient) has not risen over the past few years. Should we take his word for it? Due to the lack of financial reporting transparency in terms of drug pricing at every level of this convoluted chain, there is currently no way for an independent source to validate his claim.
Ubl said he believes advocates are too focused on the “list price” of insulin. Regarding high-deductible plans, he believes the efforts for lowering burdens should be focused on health savings accounts and discount cards. However, since these are targeted, specific solutions, there will always be “winners” and “losers.” Someone will always be paying the list price. We need a level playing field in terms of insulin access. Or better yet, diabetes treatment should not be a “game” at all.
Another statistic that was frequently repeated is that we’re spending $245 Billion on annual health care costs related to diabetes. Costs do not materialize randomly out of thin air. They’re set by those who have the power. The most effective and impactful steps towards a solution, such as lowering insulin prices, will be ones that solve the problem at the source.
Solutions for Everyone
Overall, the event was interesting and a good way to spend my morning. I want to thank The Hill and PhRMA for hosting this event and all the panelists for sharing their time, thoughts and knowledge. While I did not agree with all of their beliefs or solutions, I’m glad I had an opportunity to hear them.
It was unfortunate that the T1 panel was not focused on finding a solution for all, especially following the T2 panel that focused on underrepresented and underserved communities. To audience members, many of whom aren’t familiar with the nuances of diabetes, this may well have given the impression that access to technology for T1Ds isn’t an issue.
As far as a solution for “tackling diabetes,” I urge everyone to think about and advance solutions that will impact ALL OF US. Get out of any bubble you find yourself in -- including the DOC (Diabetes Online Community). Make friends in other diabetes communities who don’t mirror your lifestyles and treatment choices. Let’s bridge the treatment gap. We cannot tackle diabetes without tackling diabetes for everyone!
Thanks for attending and sharing your thoughts, Hannah! We also want to tell The Hill folk how much we appreciate their coordinating this meeting, that will hopefully help prioritize D-policy discussions going forward.