Ahead of a dinner provided by the Senior Friendship Center in Poughkeepsie two days before Thanksgiving, local congressmember Pat Ryan stopped by to talk about a federal bill he had sponsored called the “Stopping Pharma’s Ripoffs and Drug Savings For All Act.” Ryan put a face on the legislation by providing a platform to a young spokesperson caught at the intersection of medical necessity and corporate profit-gouging.
Fifteen-year-old J.T. Crawford has lived with Type 1 diabetes (T1D) since he was twelve years old. “I’ve had to rely on insulin and medical necessities on a daily basis to keep me healthy,” said Crawford.
Crawford’s chronic condition causes sugar to build up in his blood stream instead of entering the cells of his body as a source of energy. His body breaks down fat to use as fuel instead. Eventually a buildup of acids in the blood, a condition known as ketoacidosis, will result.
Excessive thirst, stomach pain, nausea, weakness, fatigue, vomiting. Left untreated, Crawford will die.
“Kids should not be so stressed about what they eat or how to manage their blood sugar,” said Crawford. “They shouldn’t have to stress about the affordability of insulin vials, insulin pens and continuous glucose monitors. I loathe the fact that kids like me that already have so much on their plate also have stress about affording insulin.”
The administration of the life-saving solution, delivering insulin directly into the blood with a needle, was first performed in 1922. A century later, insulin is most often administered under the skin rather than into a vein.
The exorbitant cost of medication is of critical concern for Todd Tancredi director of the Dutchess County Office for the Aging. When it was his turn to speak, he pointed to a 2022 study which found that over 20 percent of adults 65 and older had experienced “cost-related medication non-adherence.”
“That means they decided not to fill a prescription,” said Tancredi. “Skipped doses, took less medicine, delayed filling prescriptions, or used someone else’s medication due to cost. Out-of pocket costs are particularly high for people with chronic conditions such as diabetes, high blood pressure, arthritis, heart disease.”
Tancredi said the typical client for offices for the aging throughout the state is a woman in her early eighties who lives alone, has a low income, has substantial functional limitations, and deals with four or more chronic conditions.
“That is why I think this bill is so important,” said Tancredi. “It’s going to lower costs for everybody.”
Capping pharmaceutical costs
With cures found far and few in between, the industry that thrives largely by treating chronic conditions is known colloquially as Big Pharma. The research, patenting, production and distribution of drugs by the pharmaceutical industry hauls in hundreds of billions annually worldwide. Ryan’s bill primarily focuses on the patenting portion of the medicine food chain. Ryan broke down the current state of affairs.
“When you develop a new drug, you have 20 years where you own that patent, meaning you’re the only one that can produce it, the only one who can sell it,” he explained. “Essentially you can charge whatever you want. And that goes on for 20 years. Then what you’re allowed to do with that same drug is make a very, very slight tweak, not necessarily something substantive, a slight adjustment, so then you can justify getting 20 more years of monopoly control over this drug.”
Based in Manhattan, Pfizer is the largest multinational pharmaceutical company in the world. Pfizer reported revenues overtopping $100 billion for the first time in the company’s history in 2022.
“Every single one of the big players repeatedly does the thing that this legislation is trying to stop, which is pushing to unethically extend these patents on drugs,” said Ryan. “It’s just a very clear profit motive that they don’t even really try to hide.”
The companies’ drug patent control and drug pricing practices have begun to encounter stronger headwinds.
Ryan cites insulin manufacturer Eli Lilly as a case in point. Based in Indianapolis, Lilly is the twelfth largest pharmaceutical company in the world, reporting revenues of $28.5 billion. Last year, the company said it would cut the list price for two of its most commonly prescribed insulin drugs, Humalog and Humulin, by 70 percent starting this October.
An average diabetic needs about two vials of insulin per month. Previously, the average price for a vial of Humalog was $346, and for a vial of Humulin $190.
Three states — Maine, New Mexico and Washington — had passed laws by the beginning of 2021 keeping the costs for supplies of insulin at $35 a month. New York has set its top cost at $100 for traditional insulin medications.
“Eli Lilly decided on their own, under this [national] pressure to cap it at $35 for all Americans,” said Ryan.
There is appetite for this kind of legislation on both sides of the aisle, said Ryan. Though the names of his co-sponsors have not yet been announced, he said his bill had bipartisan support,
While he believes the 20-year period banning competition from generic versions of lifesaving drugs to be excessive, by leaving it in place Ryan said, his legislation was recognizing the tremendous investment needed to develop new drugs.
“That’s the only way we keep our ability to develop life saving drugs,” he said, “so there’s certainly nuance here.”
“Members of both parties under the leadership of the president said we are finally going to allow our country to negotiate prescription drug prices and bring them down,” said Ryan, “and we’re going to cap the cost of insulin for people like J.T. and his family.”
Dreaming versus doing
And this is where the rubber meets the road. Trying to pass laws that will rein in the profits of the pharmaceutical companies promises to be a herculean task.
According to the non-partisan, money-tracking research non-profit Open Secrets, the trade group for Big Pharma, known as Pharmaceutical Research & Manufacturers of America (PHRMA), spent $500 million on lobbyists over the last 25 years in order to influence government policy and advocate for their agenda.
This is the fourth highest cumulative amount spent on lobbying, trailing only those of the U.S Chamber of Commerce, National Association of Realtors, and the American Hospital Association.
In the three years since the pandemic, PHRMA’s financial advocacy has increased its standing to third place. One reason for the increased spending was the trade group’s resistance to the portion of the Inflation Reduction Act that for the first time provided for the government to negotiate a limited list of drug prices for Medicare.
“They spent hundreds of millions of dollars of lobbying against … the ability to negotiate for these ten drugs,” said Ryan. “This is all public record. You can see the expenditures by the industry are just astronomical.”
On the list of ten drugs are blood thinners, drugs for autoimmune diseases, heart and blood-pressure drugs, and diabetes and cancer drugs.
“Think about it if they’d actually put that money towards lowering the cost for people rather than expanding their profits,” said Ryan, who has no doubt he will be a target of Big Pharma in the next election cycle.
“This will likely be a multi-year effort to ultimately get something of this magnitude passed,” said Ryan. “That’s unfortunately the pace that Congress moves at, but if we can get this passed and if prescription drug bills would go down, tens if not hundreds of millions of people’s lives will be improved.”
Seventy-one-year-old Linda Sarubbi sat observing Ryan for the first time with a front-row seat at a table with a group of elderly women. She liked what she heard.
“He’s very well-spoken,” said Sarubbi. “And it’s going to be something that that’ll benefit not only the young but us older people as well. With the cost of our drugs. I think he’s got a handle on what we need.”
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