Democrats are betting their legislation to lower drug prices will be a political winner — but some patients learning the details are skeptical it will help them.
Speaker Nancy Pelosi of California said in late September that her signature drug pricing bill received “rave reviews from everyone but the pharmaceutical industry.” And lawmakers tried to tout the bill during the October recess. Two House committees will markup the measure on Thursday.
Some advocates say it will be hard to get more constituents excited about the bill as currently written, especially as Democrats struggle to break through with their health care message against the backdrop of impeachment.
The party’s progressive wing is emphasizing that the bill would affect a limited number of drugs and that drugmakers may not participate. Several people with high drug costs interviewed by CQ Roll Call share some of those concerns.
Even as the drug industry and Republicans criticize Pelosi’s proposal as a big-government price control plan that will harm research into future cures, some patients and advocates are simultaneously questioning whether her plan would do enough to drive down consumers’ costs.
Kevin Wren, a baker in Seattle with diabetes, said he is encouraged to see the House act on the issue but doubts he’ll get real financial relief.
“I think more needs to be done to make it impactful on the prices I pay every month,” said Wren, who volunteers for T1International, a patient advocacy group that supports the bill but has raised concerns that it might fall short of lowering some list prices.
Those views underscore the challenges Democrats may face in attracting attention to their plan and helping voters understand it.
The bill would require the government to negotiate prices for at least 25 of the 250 drugs that cost the health system the most, and effectively limit those prices to 20 percent above the average paid in six other wealthy countries that generally pay less. Negotiation wouldn’t go into effect until 2023, and would only affect drugs without any generic competition.
One part that seems likely to win support from patients would add a $2,000 cap on the open-ended out-of-pocket costs for seniors in Medicare’s Part D prescription drug program.
But critics say constituents may be disappointed when they realize some high-cost drugs probably wouldn’t face negotiations.
Some of the products that Medicare and private payers spend the most on — the autoimmune treatment Humira, blood cancer drug Revlimid, blood pressure pill Xarelto, nerve pain drug Lyrica — will all likely have generic competition by 2023 or earlier.
The bill's targets for negotiation include insulin, whose escalating price has caused many diabetics to ration the life-saving drug. But EpiPen, a drug-injection device to treat allergic reactions whose list price stands at $630 despite public outcry and a $300 generic competitor, would not face negotiation.
For years, Rae Wall, who helps manage a Denver ice cream shop, struggled to afford an EpiPen needed for a rare genetic condition that caused episodic, life-threatening swelling akin to anaphylaxis. Once, uninsured and unable to afford an EpiPen or an ambulance ride when she experienced symptoms, she drove herself to the emergency room.
Wall is now insured and on firmer financial footing, but still faces steep drug costs because of her family’s $3,000 deductible. She expressed disappointment the bill is not expected to allow for the negotiation of EpiPen’s price and likely wouldn’t lead to negotiation for her inhalers, which cost nearly $200 for a 30-day prescription, although she supports any measure to lower drug costs.
“It’s wonderful that insulin will be included, but to me, it’s ridiculous to pick and choose which drugs to lower the costs of. I have a super rare disease but it doesn’t mean I don’t struggle to afford my medication,” Wall said.
Still, Wall said the drug pricing issue might mobilize voters in the same way that health care issues did in 2018 when Democrats captured the House after Republicans sought to roll back protections for patients with preexisting conditions.
“Even if it wouldn’t impact me directly, I wholeheartedly support any legislation,” she said. “Everybody knows somebody who struggles to afford their medications.”
And the bill — which would be the most ambitious overhaul of Medicare Part D since the prescription drug benefit was enacted in 2003 — is supported by advocacy groups that push for lower drug prices.
AARP, the powerhouse lobbying group for Americans over age 50, is championing the bill in an advocacy campaign. Vice President Megan O’Reilly said in a statement that the bill would be a meaningful improvement.
“In 2017, the top 25 drugs accounted for nearly 30 percent of all Part D spending. Targeting 25 of the highest cost and most utilized drugs each year will have a huge impact on the millions of older Americans who rely on them,” O’Reilly said.
‘Is my drug covered?’
The House bill also prioritizes drugs that cost the system the most, which are not always the same as the drugs that cost patients the most.
For example, the drug Daraprim — which treats an infection common in HIV/AIDS patients and was infamously hiked by 5,000 percent — cost Medicare around $37,000 per claim in 2017 but was used by fewer than 1,000 people, protecting it from the reach of the House bill. A single prescription for a drug like Daraprim would instantly put Medicare patients near their cost-sharing limit.
Similarly, Gail Orcutt, a 66-year-old retired Iowa teacher with lung cancer, needs a drug that costs about $67,000 per year and another costing $74,0000 per year. Her cost-sharing totals nearly $1,200 each month, and she says the proposed cap on those costs would help. But neither drug is used enough to face negotiation under the bill, meaning people outside of Medicare wouldn’t be protected against the high list prices.
Some note that the bill doesn’t fully repeal the section of law preventing the government from negotiating for Medicare drug prices — instead adding an exception to allow negotiation on a specific subset of drugs. Many view that provision, known as the “non-interference clause,” as embodying the drug industry’s power.
Alex Lawson, the executive director of Social Security Works, a nonprofit that advocates for action on drug prices, said repealing the non-interference clause would be a major symbolic victory.
“This shining epitome of pharma’s corrupting influence has to be taken to the woodchipper,” Lawson said.
House Democratic leaders emphasize that the bill may change as it goes through committees, and that the number of drugs that would face negotiation could grow. They picked the current numbers so that the Congressional Budget Office could more easily estimate the bill’s savings, according to a senior Democratic aide.
Expanding the universe of drugs under negotiation, the aide said, could raise the risk that a company could lobby an administration to negotiate for drugs that are less important to its bottom line.
The most important question for patients is how the bill might affect them.
Polls show that most Americans support the idea of letting the government cut drug prices, with 85 percent of people in a recent Kaiser Family Foundation poll backing negotiations for Medicare and private insurance. But public opinion shifted dramatically when arguments against the bill are raised. The poll showed that 65 percent of Americans would oppose negotiations if it limited access to newer drugs.
“People back home don’t say, ‘What’s the CBO score of the bill?’ They say, ‘Is my drug covered?’” said Rep. Mark Pocan of Wisconsin, co-chair of the Congressional Progressive Caucus.
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