By Fiona Soltes
Each year, the Washington Insider session provides an update on federal health care policy developments that affect the bleeding disorders community.
For 2021, speakers included Johanna Gray and Ellen Riker, principals at Artemis Policy Group.
The session was moderated by Nathan Schaefer, MSW, NHF’s vice president of public policy. And he opened up the informative talk with the encouragement that the bleeding disorders community had “a very long and rich history of successful advocacy over the past few decades,” much of it stemming from the HIV crisis. There also is a strong history of obtaining funding for the network of hemophilia treatment centers.
“So we’ve long been known as a powerhouse when it comes to policy and advocacy,” he said.
Far from a history lesson, however, the session provided a deeper dive into current efforts.
Riker began with an overview of the NHF Federal Policy Agenda, including research, surveillance and outreach; support for hemophilia treatment centers; blood and product safety and drug approvals; and access to care.
One area of recent emphasis—and success—has been in access to skilled nursing facilities for Medicare beneficiaries with bleeding disorders. There also has been an emphasis on the Affordable Care Act and accumulator adjustor programs.
She explored the role of the skilled nursing facility (SNF) in the care of those with bleeding disorders. Those with bleeding disorders may not be able to return home immediately after a hospitalization, she said; there may have been surgery related to joint damage, or other challenges related to comorbidities like hepatitis or HIV/AIDS, and they may need a higher level of care than they could receive at home or at a rehab hospital.
Previously, there was a real cost issue related to access; Medicare pays SNFs a prospectively determined rate for each day of care, and the payment is expected to cover all care. But that rate was too low to cover the costs of bleeding disorders treatments—with estimates as high as $10,000 per day post-surgery—so most SNFs wouldn’t accept those with bleeding disorders on Medicare.
The first step toward change was to provide data to support the need. The goal became allowing SNFs to bill separately for bleeding disorders treatments and their administration.
There were good precedents, she said. For example, other hospitals can bill separately for bleeding disorders treatments. In addition, there were also other SNF per diem exceptions. But legislation was still needed. Just before COVID began at the start of 2020, the team was able to get a bill introduced in both the House of Representatives and Senate.
“I have to tell you, each one of the initial sponsors of the bill had close relationships either with a chapter, or an HTC or an individual in our community,” she said. “I can’t say enough about the strength of our grassroots system.” More advocacy efforts followed, and the SNF bill was included in the end-of-year funding/COVID relief bill passed by Congress in December 2020. It takes effect Oct.1, 2021, and it’s important to spread awareness.
The benefit of being a rare disorder, she said, is that the changes that make a huge difference to the community are often just a drop in the bucket of overall federal government spending.
Gray, meanwhile, spoke more broadly about the Affordable Care Act, including what has happened over the past 11 years and how NHF has been involved in each aspect. She touched on access issues with accumulator adjustor programs, which tally up a person’s co-pays and cost-sharing to add up to their deductible and out-of-pocket maximum. They’re problematic, she said, but efforts toward change are well underway.
A number of states have active advocacy campaigns, and others have been successful in banning the programs. Federal policy also plays a role—as does that ongoing voice of the community.
“Your voice really matters,” she said. ■