On May 23, 2021, Joanna Buscemi, PhD, shared her perspective on diabetes mortality inequities and policy recommendations to address them. As part of MedPage Today‘s review of the past year’s top events, Buscemi and Allyson Hughes, PhD, follow up with the latest based on the Biden administration’s Build Back Better Act (BBBA), which includes many policy changes related to diabetes.
The Biden administration’s Build Back Better Act (BBBA) includes several provisions likely to benefit the health of Americans living with diabetes, offering health benefits above and beyond just diabetes care. First, the Act caps the price of the insulin copay at $35 for insured Americans. Second, the BBBA includes provisions for a large expansion of healthcare coverage that is expected to provide health insurance for an additional 4 million Americans. Finally, the BBBA expands nutrition assistance programs to address food insecurity and invests in parks and public transit initiatives that promote safe and convenient ways to be physically active. While the future of the BBBA now hangs in the balance since Sen. Joe Manchin (D.-W.Va.) announced he will not back it, any amended version of the bill or newly crafted social spending legislation should preserve these key health provisions and address other significant concerns that go unaddressed for people with diabetes, particularly those from minoritized groups.
It’s important to begin with an understanding of the limitations of the insulin copay cap. Although this copay cap may be helpful for many insured Americans, it does not cap the cost of the insulin itself. This means that without insurance, insulin prices remain the same — and will continue to exponentially increase over time. As a result, the cost remains difficult to manage for those who are not eligible for Medicaid or Medicare and have competing financial priorities. Further, those with coverage will still be responsible for the full cost of the insulin if they are out of insulin but in a coverage gap. These policy limitations can lead to insulin rationing, which can be deadly. It may also leave many people with diabetes with no choice but to seek insulin on social media sites from donors or sellers.
True equity for people with diabetes would entail taking on the pharmaceutical companies to cap the cost of insulin itself so that it is affordable for Americans with or without healthcare coverage. Big Pharma continues to profit off the backs of people with diabetes and Congress must put an end to it once and for all. Capping the cost of this expensive, life-saving medication may also set a precedent and eventually benefit people with other diseases requiring high-cost medical treatment due to price gouging — such as people who need an EpiPen, have rheumatoid arthritis, cancer, and/or other conditions.
Although the expansion of Medicaid and Medicare in the current version of the BBBA will likely benefit those who were previously uninsured, limitations on health insurance coverage remain for patients with diabetes. The first limitation, recently detailed in a joint position statement from the Society of Behavioral Medicine and American Psychological Association’s Society for Health Psychology, is that there are significant barriers to getting essential diabetes supplies — such as continuous glucose monitors (CGMs) and insulin pumps — covered by insurance. To be approved for insulin pumps, people with diabetes have to attend quarterly face-to-face visits with their provider, which increases the burden on patients and providers alike and decreases access to CGMs. This requirement has been temporarily waived because of the pandemic, but needs to be permanently waived to increase access to diabetes supplies for the long-term. The second issue with healthcare coverage is that it often takes away freedom of choice with regard to devices and types of insulin. Take the Walmart insulin for example: Walmart offers low-cost insulin at their retail stores, but the insulin came to market 25 years ago and is slower acting than other available insulins. This may seem like a subtle issue for those without diabetes. But people with diabetes know that the speed of insulin makes a significant difference and you have to be trained in how to use each type of insulin, making it very difficult to simply switch to something new. Similarly, if people do not have freedom of choice due to insurance companies’ restrictions, this forces some to pay out-of-pocket for the best insulin for their needs. These limitations are largely regulated by states, suggesting that statewide policies regarding insurance coverage for diabetes-related treatment and devices should include a wide variety of products.
Despite certain limitations in the BBBA, it raises several health-focused initiatives with great potential to move the needle on diabetes mortality equity by lowering the insulin copay, expanding healthcare, and increasing access to healthful foods and safe spaces to exercise. Future versions of the legislation must keep these changes. Further, Congress must maintain the focus on improving other social determinants of health — education, safe housing, safe drinking water, and affordable childcare. These are important structural changes that are likely to have positive impacts on minoritized Americans more broadly. But until pharmaceutical companies are held accountable, every American is guaranteed healthcare, and insurance companies cover and offer choice to patients regarding medication and devices, inequities and barriers will remain. There are three acts proposed by the Congressional Caucus on Diabetes that should be reconsidered in an effort to mitigate these remaining issues: Protecting Access to Diabetes Supplies Act (H.R. 771), Preventing Diabetes in Medicare Act (H.R. 1686), and Medicare CGM Access Act (H.R. 1427).
Further down the line, researchers will need to quantify the real impact of key pieces of legislation on diabetes mortality inequities and other diabetes-related outcomes, as well as their impact on other diseases related to systemic oppression — heart disease, cancer, and obesity, among others. In the meantime, it is important that legislation in the new year focuses on completely eliminating barriers to care to improve the health and quality of life of people with diabetes. The experts on eliminating policy barriers to adequate care are the people experiencing them. As a result, patient advisory committees should have a voice at the table when policy decisions are being made to ensure that large investments, while well-intended, don’t miss the mark.
Joanna Buscemi, PhD, is a clinical psychologist, assistant professor in the Department of Psychology at DePaul University, and Chair of the Health Policy Council for the Society of Behavioral Medicine. She specializes in health inequities and health policy advocacy. Allyson Hughes, PhD, is a health psychologist and assistant professor in the Heritage College of Osteopathic Medicine at Ohio University. She specializes in the psychosocial challenges of diabetes management including health equity regarding severe hypoglycemia, diabetes distress, diabetes complications, and disability. She has lived with diabetes for 26 years.