Washington Wire: June 2019

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HFA held a Patient Fly-in and Virtual Hill Day on June 10, 2019. Twenty-four community members from 14 different states came to Washington, D.C. to tell their lawmakers about living with bleeding disorders – and to explain what people in our community need in terms of quality, affordable health coverage. Fly-in participants also urged support for HR 2279, the “Safe Step Act,” which seeks to create safeguards for patients subjected to step therapy protocols. Other community members participated in a “Virtual Hill Day,” using HFA’s Legislative Action Center to communicate with their lawmakers by calls, tweets, or emails. Thank you to all who participated! You had an impact: thanks to your efforts, three Representatives visited during the Fly-In subsequently signed on as cosponsors of HR 2279. Your input and your voices are invaluable as we continue working together to advocate for a health care system that serves all of us. If you didn’t have a chance to participate earlier in the month, there’s still time to reach out to your lawmakers! Use the Legislative Action Center or schedule an in-district meeting during the upcoming summer recess months.
Surprise billing. Lawmakers have talked a lot about surprise billing in recent months, in Washington and in state capitals – a welcome development, since the problem of surprise billing affects many (up to ¼ of all people who get care in a hospital setting).
Surprise billing can happen when you unknowingly get services from an out-of-network health care provider. Maybe you had an emergency and were taken to an out-of-network hospital, or maybe you went to an in-network hospital, but it turns out that one of the providers involved in your care did not participate in your health plan’s network. All too often, the result is a high and unexpected bill. When a provider is out-of-network, your share of the bill is higher – say, 40% for out-of-network services, as compared to 20% for in-network services. Still worse, your plan’s negotiated rates don’t apply, so the out-of-network provider can demand its full list price and “balance bill” you for the entire sum that’s left, after factoring in your out-of-pocket payment and the amount the health plan has agreed to pay. The result can be financially and emotionally devastating for families caught in the surprise billing trap.
As we reported last month, Congress is currently considering a number of bipartisan bills to address surprise billing. All lawmakers and stakeholders generally agree on the need to protect patients against unexpected and outsize cost-sharing; disagreements exist over how to resolve insurers’ and providers’ claims with respect to the underlying charges. Two Senate bills (S. 1531 and S.1895) and one House discussion draft would hold patients harmless from surprise medical bills for out-of-network emergency claims and for care provided after an emergency admission when the patient can’t be moved to an in-network facility. S. 1531 would also apply to surprise bills associated with, e.g., out-of-network lab services ordered by an in-network provider.
Against this backdrop, the House Energy and Commerce Committee’s subcommittee on Health held a hearing into the problem of surprise billing on Wednesday, June 12th. HFA’s Director of Advocacy, Sonji Wilkes, was invited to testify at the hearing regarding her family’s experience with “surprise billing.” Shortly after Sonji’s son, Thomas, was born, he was diagnosed with severe hemophilia A. He was whisked off to the neonatal intensive care unit at the in-network hospital where Sonji had given birth. Unbeknownst to the Wilkes family, the NICU was not considered in-network as the providers and services had been contracted out to a third-party provider. Sonji and her husband only learned of this after receiving a $50,000 bill in the mail several months after Thomas’s birth. Sonji’s testimony carried a punch! You can listen to that testimony here.
*Note: While Sonji is an HFA employee, her testimony was arranged by FamiliesUSA.
Quick Hits:
Welcome to our interns! Dylan Edwards and Jasmin Wyatt arrived in Washington this month to work as Policy and Government Relations interns with HFA for the summer. They immediately hit the ground running, assisting and participating with the Patient Fly-In. We are grateful for their help and look forward to a summer of learning and exploration with them. You can read more about Jasmin and Dylan here.
HFA filed comments with two House Committees regarding cost-sharing for drugs covered under Medicare Part D. HFA noted that, while clotting factors and certain other hemophilia treatments are covered under Medicare Part B, individuals with bleeding disorders may also rely on Part D drugs and need relief from copays associated with these medications. HFA expressed support for the Committees’ proposal to cap Medicare beneficiaries’ exposure to copays and coinsurance for Part D drugs.
Also in June, HFA filed comments with CMS regarding a proposed rule setting reimbursements for care in skilled nursing facilities (SNFs). Under current law, Medicare pays SNFs a bundled fee for patient care. That fee falls far short of covering the cost of clotting factor or non-factor hemophilia medication – so individuals with bleeding disorders face steep barriers in accessing care in SNFs. HFA called on CMS to address this problem by carving out and reimbursing SNFs separately for bleeding disorders treatments.
President Trump issued an Executive Order on June 24, 2019, which directs federal agencies to develop rules requiring disclosure of prices negotiated between hospitals, doctors, and health insurers. The Executive Order’s stated aim: increase transparency so that patients have more information about what their care will actually cost before they get it. Because the Executive Order by itself has no force of law, the exact details of what hospitals and insurers will have to disclose remain to be worked out during the rulemaking process.