More than a million Americans have type 1 diabetes (T1D). Every day, our lives revolve around managing it, and it factors into nearly every decision we make.
Over the next several months, Congress and the new administration will also need to make decisions that impact the lives of people with T1D. As our elected U.S. officials make these decisions—on the budget, on regulatory policies, on the health reform law—it’s crucial they understand what’s at stake for those with T1D, including adults and children, and the millions who could be diagnosed in the future.
Congress and previous administrations have a long, bipartisan history of supporting diabetes research—research that has improved the lives of millions. This Congressional support, and the scientific breakthroughs that resulted from it, did not magically appear; it has taken thousands of hours of hard work, phone calls, letters, and meetings with lawmakers by JDRF advocates and the entire T1D community, telling their stories of what it’s like to live with T1D.
Along the way, the Diabetes Caucus has grown to be the largest in Congress, and last fall, 75 senators and 356 representatives sent a letter to Congressional leaders urging support for the Special Diabetes Program (SDP). The SDP is a small but critical program that provides $150 million annually for T1D research at the National Institutes of Health. The funding has led to significant scientific breakthroughs like artificial pancreas technologies that automate blood glucose management. In fact, the first artificial pancreas device system is expected to be available later this year and multiple companies are already developing next generation systems; this would not have happened without the SDP.
Yet the SDP’s funding is set to expire on September 30, 2017. Not only should its funding be renewed, but it should be funded for at least three years so there is some certainty and continuity to this life-saving research.
Now, in order to benefit from these new innovations, people need to have access to and be able to afford them. That means ensuring that they—and all those with pre-existing conditions—are protected in any healthcare reform legislation.
Specifically, people with diabetes should have access to the same health insurance at the same rates as those without pre-existing health conditions. Young adults should continue to be allowed to stay on their parent’s health insurance plan until the age of 26. Insurance companies should be prevented from setting annual or lifetime dollar limits on their spending for an individual’s covered benefits. And provisions should remain in place to close the Medicare coverage gap for prescription medicines, known as the “donut hole,” by 2020, which will help Medicare beneficiaries afford insulin and other drugs.
Access also means recognizing that therapies to treat diabetes are not one-size-fits-all. People with T1D should be able to choose the diabetes management tools that are prescribed by their doctor and work best for them, not for their insurance company. We have to make sure that health plan policies do not limit choice of insulin pumps, and that marketplaces remain competitive and open to innovation.
Finally, new treatments and technologies need to be affordable. More than ever, people with diabetes are facing high out-of-pocket costs for the insulin and other diabetes technologies and tools they need to survive. Employers, health plans, and manufacturers have a responsibility to make sure out-of-pocket costs do not prohibit access. With oversight of Medicaid, Medicare, and the largest employer-sponsored group health insurance plan, Congress should implement policies that enable insulin to be available at low and predictable out-of-pocket costs.
In 1970, two mothers seeking a cure for their sons with T1D founded JDRF. In the decades since, we have worked tirelessly to advocate for dollars and policies that support their goals. These efforts have helped the scientific community develop therapies and treatments that have transformed diabetes management, leading to healthier, longer lives.
In 2017, we will continue these efforts, working with lawmakers to accelerate investment and innovation in T1D solutions, and ensure access. Living with diabetes is still difficult, and those of us with it cannot relax our vigilance – and Washington shouldn’t either.
Aaron J. Kowalski, PhD, is the chief mission officer at JDRF, the leading global organization funding type 1 diabetes (T1D) research, with a mission to accelerate life-changing breakthroughs to cure, prevent and treat T1D and its complications. Read more about JDRF’s advocacy work here.