On May 8, the Senate Special Committee on Aging held a hearing on “Insulin Access and Affordability: The Rising Cost of Treatment.” While we are pleased that the Senate is aware of this important issue, the hearing left us frustrated with its lack of meaningful solutions.
The hearing was typical. First, Chairman Senator Susan Collins and Ranking Member Senator Bob Casey made statements on why the high price of insulin is an important issue that Congress should address.
Four witnesses gave oral testimony and then answered questions. The first witness was Dr. William T. Cefalu from the American Diabetes Association. He gave testimony on the need for transparency in the insulin pricing system.
The second witness was Paul Grant, the father of a son With type 1 diabetes. He discussed how he gets his son’s medication from a foreign country in order to pay less for it. Mr. Grant purchased his insurance through the marketplace with a high-deductible plan. Unlike previous years with predictable costs, he was shocked to find the price of insulin was high, as he had not met his deductible for the year.
Next, Lois Ondik, a retiree, gave testimony on how she has avoided having to use medication to manage her type 2 diabetes by going to a diabetes self-management program. She does not currently use insulin in her daily diabetes management.
Finally, Dr. Jeremy Greene from the Johns Hopkins University School of Medicine gave testimony on the lack of generic insulins available to his patients.
A video of the entire hearing as well as all statements can be found here.
The Senators mostly asked questions about how to make the insulin pricing system more transparent. Dr. Cefalu called for transparency across the entire pricing system, from manufacturers, to pharmacy benefit managers, to insurance companies, to pharmacies. Dr. Greene proffered that if there were generics on the market, insulin prices would come down in order to be competitive.
rDNA Human Insulin and Analog Insulin
There were two troubling issues in this hearing that bear examination.
First, neither the physicians nor the patients giving testimony discussed using less expensive, human insulins, like rDNA R and rDNA NPH, to avoid the extreme consequences of going without insulin. Dr. Greene discussed how his patients sometimes skip doses of their insulins because they cannot afford what he prescribes, but he did not say that he had the option to prescribe these low-cost insulins. The hearing was on access and affordability, and the “older” insulins meet both criteria.
This is contrary to what he provided in written testimony, in which he states that there are less expensive insulins (rDNA human insulin) rather than the more expensive insulin analogs and that in fact, no longitudinal studies have shown that analogs are superior to rDNA.
This is taken from his written testimony (p. 9):
Dr. Greene’s oral testimony that there is no low-cost insulin on the market does not make sense when compared to the paragraph above, in which he writes that analog insulins are only slightly superior to rDNA insulins. If analog insulins are not significantly better than low-cost rDNA insulins, why didn’t Dr. Greene discuss the option of prescribing rDNA options to his patients who could not afford their analog insulins?
The second issue with this hearing is that it was very focused on transparency in the pricing system. More knowledge is always better, but in the case of insulin pricing, knowing how it is priced will not change the price. Simply put, knowing what something costs does not mean you can buy it. We would hope that Congress would put more effort into making insulin affordable and accessible rather than making pricing transparent.
What Can You Do?
DPAC provides a program called the Affordable Insulin Project, which is aimed at getting employers to exempt insulin from health insurance deductibles. The AIP gives you worksheets and tools to fill out and bring to your employer’s benefits manager to show them how much you spend on healthcare each year and what effect exempting insulin would have on your (and their) bottom line. And for those without employer-based insurance, there is a page dedicated to patient assistance programs.