Vivian Leal has Multiple Sclerosis. The company that makes the drug she needs called and offered to lower her copay.
“Five dollars. That’s good for me,” Leal told federal and state lawmakers at a roundtable Tuesday in Las Vegas. “That’s as long as I bill private insurance. ‘No government sources,’ they said. That’s so they could bill $90,000 for the year. And they call that charity.”
Leal is referring to a Co-Pay Assistance program, in which patients on drug regimens sign up (usually via the drug company’s website) and receive significantly lower co-payments.
While the drug company is on the hook for the remainder of the co-pay, it can charge private insurers tens of thousands of dollars a year for the drug, and in some cases, write off the cost of the co-pay as a charitable subsidy.
Congresswoman Susie Lee (D-Nev.), Congressman Steven Horsford (D-Nev.) and Las Vegas Democratic state Sen. Yvanna Cancela attended the discussion on prescription drug prices, sponsored by Battle Born Progress, a non-profit that fuels progressive activism.
Cancela says that while political director for the Culinary Union, she learned that prescription drug prices are the number one cost driver for the union’s health fund, with the diabetes drug insulin leading the way.
According to the Centers for Disease Control, in 2017, more than 100 million Americans were diabetic or pre-diabetic, meaning the condition would develop if not prevented.
In the 2017 Nevada Legislature, Cancela championed a first-of-its-kind measure requiring insulin manufacturers to report their costs when price increases exceed certain thresholds. This year, Cancela chipped away at another expensive treatment — this time for asthma sufferers.
Roughly one in ten children in Nevada suffers from asthma, according to legislative testimony presented this session by health officials.
A study by the Centers for Disease Control places the annual cost of asthma at $80 billion.
“I’ve had asthma since I was seven,” Joey Douglas, now 13, told lawmakers Tuesday. “I’m always going to the hospital. Sometimes I stay three or four days. Each emergency room visit costs $100 for the copay.”
Joey told how his mother is forced to skip car payments and other essentials in order to cover the cost of his care.
Illness is blind to political leanings. Of all the contentious issues clogging Congress, lowering the cost of prescription drugs should not be among them, said Lee.
“There are not many issues in this country where I think we can come together, but I do think prescription drug pricing – it doesn’t matter if you’re a Democrat, Independent or Republican,” Lee said, citing the House passage of HR 1, which she says gets “rid of the dark money used to control Congress for so long.”
“It’s sitting in the graveyard on Mitch McConnell’s desk,” Lee said, referring to the Senate Majority Leader who is blocking legislation from reaching the Senate floor. “It’s just one more piece of legislation he’s holding up to protect his donors rather than protect the people of this country.”
HR 2069, which passed unanimously out of the House Ways and Means Committee, is slated to come up when Congress returns from recess, said Horsford, its sponsor.
The bill mirrors Cancela’s state legislation, according to Horsford. Drug manufacturers would have to disclose their costs anytime a drug price increases ten percent a year, thirty percent in three years, or if launch costs exceed $26,000.
“By disclosing all of their costs we can get to the root issue because they tend to want to talk about Research and Development and the fact they need to spend money for innovation,” Horsford said. “We want that, even though it’s being subsidized by taxpayers. What we’ve found is a lot of their costs are in marketing and administration.”
“The dollar figures that Pharma spends on lobbying are real,” Cancela added. “When we began this fight in 2017, we went from five to 73 drug manufacturer lobbyists in the course of a week. The effect that kind of money can have is real.”
“It’s not accidental that one of the three insulin manufacturers, Eli Lilly, is a major contributor to the Trump administration and has profited this year an additional $76 million from the Trump tax cuts,” Cancela said, sparking vocal outbursts from the audience of about 40 people. “That kind of outrage is why there’s a movement to talk about insulin across the country.”