This month’s Democratic takeover of the U.S. House of Representatives following the Nov. 6 midterm elections could be good news for Americans with rare diseases, according to the National Organization for Rare Disorders (NORD), which represents 280 patient advocacy organizations.
“The entire community advocated against the repeal of the Affordable Care Act [also known as Obamacare],” said Peter Saltonstall, NORD’s president. “The Democrats have already come out and said they want to help preserve ACA. The opportunity to protect pre-existing conditions and lifetime caps is a positive thing, so we see this change in the House as positive, to the extent the Democrats can protect its elements.”
The closely watched election brought the Democrats’ net gain in the 435-member House to 38 seats. In the 100-member Senate, Republicans held onto their 51-47 majority. Several races remain undecided.
Generally speaking, Democrats believe insurers should be required to cover a minimum set of benefits without price discrimination based on medical history, while Republicans favor relaxing those rules as a way to reduce premiums for healthier people.
But Pamela Gavin, NORD’s chief strategy officer, suggested that it’s “hard to say” if anything specific will take place in the final two years of Donald Trump’s presidency “because things didn’t get done when the Republicans controlled all three branches — the House, the Senate, and the presidency. There was an opportunity to improve upon the ACA, and that didn’t happen.”
Gavin said she doubts the Democrats would move to reverse the recently signed Right to Try law, which Trump (and many Democrats) enthusiastically supported and which NORD opposed. She also said she expects little movement on the Orphan Drug Tax Credit, which last year was cut in half despite an aggressive campaign by NORD and the pharmaceutical industry to keep the credit intact.
Both Saltonstall and Gavin spoke to BioNews Services — publisher of this website — on the sidelines of the World Orphan Drug Congress earlier this month in Barcelona, Spain.
“We’ve been on Capitol Hill talking to key Democrats. They all want to pay attention to high drug prices, but they have perhaps a different approach than the Republicans do,” said Saltonstall, a former hospital administrator who’s been with NORD for the past 10 years. “My feeling is that although we’re not going to see a lot of change on the drug pricing front, we’ll probably see hearings on pricing that could lead to more pressure.”
Ron Bartek, co-founder and president of the nonprofit Friedreich’s Ataxia Research Alliance (FARA) in Downingtown, Pennsylvania, said he’s “at least cautiously optimistic” now that the Democrats have retaken the House.
“That by itself wouldn’t necessarily be positive or negative, except for the fact that Democrats’ primarily election campaign across the country was healthcare first,” Bartek said. “And within healthcare, they really emphasized protection for patients with pre-existing conditions. Republicans were forced into the uncomfortable situation of having to say that they, too, were interested in protecting patients with pre-existing conditions” — even though Trump had publicly said such protections warranted further review.
“That issue alone was front and center across the country in so many close races where the Republicans had to scramble to claim they were equally supportive of pre-existing conditions,” Bartek added. “But it was a tough sell for them. It appears that Obamacare is maybe more popular than the Republicans thought.”
Bartek lamented the loss of one key Republican — Rep. Leonard Lance of New Jersey, co-founder of the Congressional Rare Disease Caucus. He praised Lance for his “tremendous support” and credited the Republican Party over the past 15 years for funding medical research at both the U.S. Food and Drug Administration and the National Institutes of Health.
“I think we can expect that support to continue under the Democrats,” he said.
Pat Furlong, co-founder and president of Parent Project Muscular Dystrophy, said the shift to Democratic control of the House is “very helpful” to people with genetic illnesses such as Duchenne muscular dystrophy, PPMD’s focus.
“The country has spoken and said, ‘We need to get things done,’ ” Furlong told us. “I think it’s a little early to tell, but I’m hopeful these new Democrats coming into Congress will bring with them the spirit of collaboration, and a willingness to think through how to protect individuals with rare genetic diseases.”
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