Physicians joined patients with diabetes and other activists in a demonstration against the high cost of insulin in the United States held in the capital this past weekend.
The protest, held on April 8, was organized by the Right Care Alliance, a grassroots activist group of clinicians, patients, and other stakeholders dedicated to making “health care institutions accountable to communities and put patients, not profits, at the heart of health care.”
The event is part of a campaign involving several such demonstrations in US cities.
The Alliance is an arm of the Lown Institute, a think tank founded by the renowned cardiologist Bernard Lown, MD, Brookline, Massachusetts, that advocates for “a radically better and uniquely American health system that overturns high-cost, low-value care.”
Several of the physicians who participated in the rally were in Washington to attend the 2018 Lown Institute Conference, held on April 9 and 10.
According to the Alliance’s website, as many as 7 million people with diabetes in the United States rely on insulin, including up to 3 million with type 1 diabetes and about 4 million with type 2 diabetes. The average cost of a vial of insulin has risen from $33 in 1996 to $112 in 2010, and is $275 today.
At the event, about 40 participants stood in front of the Smithsonian National Portrait Gallery holding “portraits” of people with diabetes adversely affected by the high cost of insulin. Participants took turns at the megaphone telling the individuals’ stories, including those of two young adults with type 1 diabetes who died while rationing their insulin.
A portrait was also presented of US Health and Human Services secretary Alex Azar, who was president of Lilly USA, the largest division of Eli Lilly and Company, during a time that the price of insulin rose substantially. Another protester’s portrait of David A Ricks called out the current chairman and chief executive officer of Eli Lilly and Company for continuing to raise the price of the company’s product.
“It’s Not a Functioning Market….Action, Not Talk, Is Needed”
“There’s no real market justification for the kind of price structure we have and the price increases we’ve seen in the last 10 to 20 years,” Lown Institute president and cardiologist Vikas Saini, MD, Brookline, Massachusetts, told Mеdscаpе Mеdicаl Nеws, adding, “It’s clearly a case of doing what the market can bear. It’s not a functioning market, and it hasn’t been for a while.”
The solution, he believes, needs to involve the entire health care system.
“There’s this finger-pointing game. The pharmaceutical companies point to the pharmacy benefit managers, and the pharmacy benefit managers point to the pharmaceutical companies and insurance plans. Everybody is pointing at each other, and the reality is that prices keep going up. So, we’re asking people to join us and begin to get organized to create pressure to change that dynamic.”
But, he also said that pharmaceutical companies could unilaterally lower prices.
“The president could demand that they lower the prices. He could create a commission, or Congress could create a commission, to lower the prices. That’s what people need. Not talk, but action.”
In the meantime, Saini advises physicians to ask patients about the affordability of their drugs.
“Doctors often are in a cloud. They just write the script, hand it out, and move on. They have no idea what it means in the life of the patient. I think it would be very instructive for them to find out.”
“Drowning Underneath the Costs”
Maia Dorsett, MD, PhD, an emergency physician from Rochester, New York, told the group about a recent patient, a middle-aged man who presented with nausea, extreme hyperglycemia, and rapid breathing. It turned out that he was due to start a new job the following week and was already in debt from previous medical bills. He had been rationing his diabetes medications until his new health insurance kicked in.
“This man was drowning underneath the costs of his medications that he needs to live,” Dorsett said.
Her hospital has social workers on-call to help and a voucher program that covers some medications, but “this is rare, and really only a temporary fix for a lifelong condition. I have to work to fill the holes in patients’ lives because we have a system that does not provide everybody with health insurance. We have a system that lets drug companies charge unpayable prices for a drug that my patients literally need to live.”
Dorsett addressed the latter part of her remarks directly to clinicians.
“If you care about what is best for your patients, your role as a patient advocate does not end at the door of your hospital or clinic….I’m here to ask you to join us in the Right Care Alliance, and together we can force drug companies to lower their prices and bring some justice back to health care.”
Jonathan Weinkle, MD, a general internist and pediatrician at a federally qualified health center in Pittsburgh, Pennsylvania, came to Washington to attend the Lown conference for the second year in a row because the issues addressed are so pertinent to his patients.
He is currently working to reduce the amount of formulary switching that occurs in Medicaid plans.
“Because of the high price of insulin, they keep switching brands. This creates confusion, gaps in coverage, and I think, terrible harm….The noncoverage creates a delay, and people ration,” he told Mеdscаpе Mеdicаl Nеws, noting that the problem also occurs with glucose meters and test strips.
“You don’t want people taking risks.”
Insulin Manufacturers Respond to the Criticism
Reached for response, all three of the major insulin manufacturers said they support the cause and have established programs to help patients who cannot afford their insulin.
“We are pleased that people in the diabetes community are engaged in this issue, and demonstrations are one way to do so. It will take continued effort across the health care system to effect real change, and Lilly is committed to working with others to make it happen,” the company said in an e-mail to the media.
In the last year, Lilly has “introduced a number of initiatives to help reduce the amount people pay at the pharmacy until broader changes occur,” including a savings program through Blink Health that allows people who pay full retail price for Lilly insulin to save 40% at the pharmacy, and another called Inside Rx, through Express Scripts. Links to Lilly’s support programs are available here.
Novo Nordisk spokesperson Ken Inchausti called the current situation “not acceptable,” but also said that the responsibility isn’t the pharmaceutical industry’s alone.
“Ensuring access and affordability is a shared responsibility, and we’re committed to collaborating with those within the health care system….The best approach to finding viable solutions is through collaboration among all stakeholders: pharmaceutical companies, pharmacy benefit managers, insurance companies, employers, patient organizations, and policy makers.”
Sanofi said it is “determined to do our part in pricing our medicines with greater transparency and according to their value, while continuing to advance scientific knowledge and bring important treatments to patients worldwide.”
To that end, the company has begun limiting its year-over-year price increases to National Health Expenditure (medical inflation) projections and disclosing its aggregate gross and net price changes.
Sanofi also offers several programs to help reduce out-of-pocket expenses, including co-pay cards for eligible patients and the Sanofi Patient Connection program, which provides medications at no charge for qualified low-income, uninsured patients.
And the company has just launched the Insulins VALyou Savings Program for insulin glargine (Lantus) and insulin lispro (Admelog) for all nonfederally insured patients, regardless of insurance status or type of plan.
No Safety Net in the United States
Some of the speakers at the protest acknowledged those programs, but dismissed them as insufficient to create sustainable change in an “essentially broken” system.
Rally organizer Hannah Crabtree, who was diagnosed with type 1 diabetes 23 years ago at age 4 and whose mother died at age 45 of complications from the disease, told the media: “We just don’t have a safety net in this country that guarantees us access to insulin. And without that, we’re days away from dying.”
Saini, Dorsett, Weinkle, and Crabtree have reported no relevant financial relationships.