Advocacy, Diabetes, and You!

November 17, 2021
Amanda Kaufman
Johns Hopkins University '20
Amanda has had diabetes for ten years. She graduated from Johns Hopkins University in May 2020 and is currently pursuing a Master's degree in Health Care Management at Johns Hopkins Carey Business School. She served as the CDN chapter president at Johns Hopkins during her undergraduate years, and she interned with JDRF International in D.C. Amanda is interested in diabetics' varied and unique experiences.

Recently, I had the opportunity to interview George Huntley, CEO of the Diabetes Patient Advocacy Coalition (DPAC) and Diabetes Leadership Council (DLC). I asked him about current diabetes-related legislation and policy, and I learned more about DPAC’s vision for the future as well as their efforts and achievements that are already underway.

Amanda: What would you say is the most common scenario you witness when it comes to issues of health care access and cost for people with diabetes? Who is the ‘typical’ person that DPAC serves?

George: We typically advocate at Congress, or with state legislators, or we educate insurance companies and employers. But the major issue we see is in access and affordability – to devices, tools, and the healthcare team that a person needs in order to thrive.

When looking at accessibility and affordability, we first ask: is the person insured? Do you have access to care? The Affordable Care Act cut the number of uninsured people, virtually, in half – but the pandemic ballooned it back up again. Hopefully it will drop again soon, as the unemployment rate drops. I know that Congress is currently trying to provide coverage options for people in states that didn’t expand Medicaid under the Affordable Care Act. How do you get coverage to the most vulnerable communities? You have to address the system as a whole.

“Very few people can afford the $350 list price. We have to unwind the whole system. ”

The second half is affordability of insulin. One of the biggest issues is the rebates inherent in the drug system. A vial of insulin with a list price of $350 actually nets around $75-80. Most of it is a rebate, which goes to third-party PBMs (Pharmacy Benefit Managers), insurance companies and other intermediaries who profit off this exchange. Very few people can afford the $350 list price. We have to unwind the whole system. Manufacturers can’t fix the rebate system. If one company stops, the others will collect more of the market share. Congress needs to fix the problem.

Everywhere you turn, there is an unbelievable mountain of opportunity to fix things. Our job as advocates is to knock down the barriers to access. We got Medicare to drop their four-finger-stick-test, but the VA [Veterans Administration] still hasn’t. There’s no end.

To answer your question, we advocate for people who can’t afford their medications, their devices, their sensors. These people are either un- or underinsured. For the uninsured, our end goal is to connect them with affordable care and coverage – raising awareness of existing programs and services, and expanding options under the Affordable Care Act. Expand the safety nets. For the underinsured, we advocate within insurance groups – Medicare, employers and state-based plans – to make sure diabetes coverage is adequate.

Amanda: What diabetes-relevant legislation is on the horizon?

George: One area of legislation is about biosimilars. A biosimilar is a is similar to another product derived from living cells. For example, Novolog and Humalog work similarly, but they are compositionally different. There are biosimilar versions now for Humalog and Lantus.

PBMs will extort a rebate to give exclusive access to formularies. Right now, Viatris’s Semglee is interchangeable with Lantus. It’s a biosimilar – safe and effective – and interchangeable, unit for unit. It’s the closest thing we’ll get to a generic. The biosimilar would cut the cost of insulin by 30% probably. But since it’s a third less of the cost, formularies don’t pick it up. Why don’t they pick it up? There’s not enough rebate in it for the PBM. It’s not going to be covered by most insurance plans unless we start forcing it as advocates.

“Everywhere you turn, there is an unbelievable mountain of opportunity to fix things. Our job as advocates is to knock down the barriers to access.”

Amanda: Is there any misinformation or confusion going around that you want to address?

George: In general, there is confusion about how the rebate system works. The bottom line is we can’t fix any part of it without changing the entire rebate system. It’s about the economics. The way the game is currently played, manufacturers can’t fix this. Insurance companies and PBMs can’t. Like I said before, the only one is Congress.

If you look at the price of a drug, and you see that it’s exorbitantly high, and it has competition at all, the reason for this is the rebate system. Overall, it’s all about what’s going on in the marketplace.

Amanda: What are the main program(s) DPAC is working on or prioritizing currently?

George: DPAC educates advocates, and we educate legislators. There are state advocacy forums, at least one a month. We’ve done around 11 so far this year. We do an hour-and-a-half program where a panel of legislators talk, and then we have an educational piece for advocates. Things that advocates should care about: non-medical switching, co-pay caps, emergency access bills, things like that. This is one of DPAC’s priorities. And we go state by state. As we do that, we gain more advocates – we have thousands in our database, in every state, but it’s never enough! – and we develop relationships with each of them. We also speak with the legislators we’ve recruited for the panels and have conversations with them as bills are being passed in their state.

In October, we held a ‘Hill’ day where we met with representatives, trained advocates, and held virtual meetings. We talked about biosimilar access – like I mentioned earlier – among other diabetes-related legislation. We talked about CGMs, and price of insulin, too.

We also hold ‘brown bag’ sessions – lunch and learn. They’re about 30 minutes. It’s a relatively deep dive on a given topic. We talk about rebate reform, or federal government direct negotiation with manufacturers. We talk about pros and cons.

Amanda: How can people get involved with DPAC, or advocacy efforts in general?

George: The best thing that anybody can do is sign up to be an advocate. JDRF, CDN, ADA, all of them. They all get involved in potentially different things. Amplify your voice. It doesn’t take a lot of time to engage. Personalize a letter to your representatives! Or pick up the phone and call! That’s even more impactful than a letter.

We give you background information on current and relevant issues, if you go to our state forums and brown bags. And when you get the call to action, answer it and make that call.

Stay informed and be ready – that’s the best thing a person with diabetes can do. And ASK questions! Legislators and representatives love to engage on that! DPAC’s job is to ‘empower the army.’ And if you want to ask us diabetes-legislation-related questions, you can find the area to ask on our website here.

Amanda: What is DPAC’s vision for the future of T1D care in regard to cost and access?

George: The simple answer is: affordable access for everybody. Diabetes care should be preventative. High deductible health plans are what’s killing people – when a patient can’t afford their medicine, then they start rationing their insulin and test strips.

In terms of policy: diabetes care should be preventative care. It should bypass the deductible and move immediately to the copay. This is more affordable. Ideally, of course, it would be free, but what we want is at least something reasonable. Affordable cost for everybody.

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