WASHINGTON – Physicians, researchers, diabetes patients, and patient advocates shared strategies for making insulin more affordable during a hearing of the House Energy and Commerce Committee’s Oversight and Investigations Subcommittee on Tuesday.
“Our insulin supply chain is broken, unfair, and dangerous. Our patients deserve better,” said Alvin Powers, MD, a representative of The Endocrine Society and director of the Vanderbilt Diabetes Center in Nashville.
A few of the recommendations floated by experts and advocates included pressuring drug manufacturers to lower list prices, eliminating rebates for pharmacy benefit managers (PBMs), and improving so-called patient assistance programs.
Over 7 million people use insulin each day to keep their diabetes under control, said Chairwoman Diana DeGette (D-Colo.). While the medication itself has changed little over the last few decades, prices have doubled since 2012 after tripling in the prior decade, she noted. (It wasn’t clear whether DeGette is aware that more recent synthetic insulin analogues such as lispro and glargine, sold as brand-name products, have taken a considerable slice of the overall market.)
DeGette and Rep. Tom Reed (R-N.Y.) are co-chairs of the Congressional Diabetes Caucus who authored a report asserting that “market failures” have pushed prices into the stratosphere.
At the hearing she cited a JAMA Internal Medicine study, published in January, that found one in four patients rationed their insulin in the past year because of costs. The study was co-authored by one of the hearing’s witnesses, Kasia Lipska, MD, an endocrinologist and research scientist at the Yale School of Medicine in New Haven, Connecticut.
Lipska told the committee that affordability directly affects medication adherence, and patient outcomes in turn. Those experiencing “cost-related underuse” of their insulin had three times the risk of hyperglycemia.
For those with type 1 diabetes, rationing insulin can lead to life-threatening ketoacidosis, noted Lipska. (In September, NPR reported on the ketoacidosis death of Alec Raeshawn Smith, who was rationing his insulin one month after going off his mother’s insurance.)
Using less insulin than necessary can also lead to other “devastating complications” including blindness, end-stage renal disease, and amputations in patients with either type 1 or type 2 diabetes, she added.
As for tackling the high cost of the drug, most if not all of the witnesses advocated for improving transparency.
“We just do not understand the flow of money though the supply chain,” said William Cefalu, MD, chief scientific, medical and mission officer at the American Diabetes Association (ADA).
An ADA working group which analyzed the issue had found little proof that upstream deals ever benefit the patient, he noted.
Committee members and witnesses alike noted that, under the current drug supply chain, everyone from drugmaker to retailer – but not the patient – benefits from higher list prices, because PBMs, wholesalers, and others receive rebates that are a percentage of the drug’s list price.
They stressed the need for drug manufacturers to lower their list prices and for PBM rebates to be eliminated entirely or passed onto consumers at the point of sale.
(Hours after the hearing ended, Cigna and its Express Scripts PBM subsidiary said they would cap monthly out-of-pocket costs at $25 for at least some enrollees. The firms said they were “partnering with insulin manufacturers to lower copayments to $25 at the point of sale.” STAT News , however, pointed out that employers who contract with Cigna/Express Scripts must agree to the plan, “and not all of them will.”)
Christel Marchand Aprigliano, CEO of the Diabetes Patient Advocacy Coalition, who herself has diabetes, pressed for completely dismantling the current system.
She said she supported the administration’s recent proposal to scrap PBMs’ rebates and instead pass on savings to patients at the pharmacy counter.
Aaron Kowalski, PhD, chief mission officer for JDRF (formerly the Juvenile Diabetes Research Foundation), also supported the administration’s plan but hoped that a mechanism to pass rebates to consumers could also be expanded to the commercial sector.
Another potential tool for helping patients afford insulin are patient assistance programs, typically offered by drugmakers to lower out-of-pocket costs for patients who qualify. However, Powers called these programs “restrictive” and “difficult to navigate.”
Indeed, Marchand Aprigliano described her struggle to enroll in such a program after her husband was unexpectedly laid off. At the time she and her husband had zero income, but the application required financial records showing past income. She was told it would take 4-6 weeks for the group to make a decision on her application.
“That is unconscionable,” she said.
Committee members stressed that such programs were “Band-aids” rather than long-term solutions and, as Marchand Aprigliano noted, can lead to delays in care.
A final factor related to insulin prices is Americans’ growing reliance on high deductible health plans that require patients to pay the full cost of a drug until they reach their deductible.
Rep. Michael Burgess, MD (R-Texas), asked, “Why do we even charge for insulin? If someone has got a diagnosis of diabetes, why not just treat it? … When someone is sick, don’t you want them to take their medicine? Why would you put a barrier there?”
Burgess pondered aloud why the Centers for Medicare and Medicaid Services doesn’t simply pay for the insulin, because of the cost savings both for the patient and the healthcare system.
“Whatever we can do to lower the cost of insulin, I think is going to increase adherence,” Cefalu said.
Burgess, again pressing the matter, asked why there should be any cost at all.
When Cefalu said this was really a question for Congress, Burgess said he would ask CMS Administrator Seema Verma “next time I see her.”
Next week, the same subcommittee is scheduled to bring in drugmakers and pharmacy benefit managers to give their perspectives on insulin pricing.