By Johanna Gray and Ellen Riker
This has been another busy year in Washington! Here is a brief recap of what has been happening and how we have been working to advocate for HTCs and people with bleeding disorders:
Drug Pricing and Health Care Costs
Congress spent much of 2019 trying to reach consensus on how to address an issue that they all agree is a problem: high drug costs and high health care costs more generally. A number of competing legislative proposals were introduced during the year with the goal of addressing drug pricing, surprise billing (when a person gets a bill for an out-of-network provider at an in-network setting), and improving transparency to help lower patients’ out-of-pocket costs. While House and Senate Leaders and Committee Chairs and Ranking Members attempted to reach consensus on final bills that could be passed before the end of the year, they have not yet resolved their differences. Congress is expected to take up these issues again in the new year in hopes of passing something by May. President Trump also supports tackling these issues before the 2020 election. The Alliance had written letters to Congressional committees and met with staff to discuss how the policies under consideration could affect HTCs and their patients. We were concerned that these bills could be a vehicle for making changes to the 340B program, but they have not yet included anything significant related to 340B. We are continuing to monitor the situation and will continue to advocate on your behalf.
Hemophilia SNF Bill
We have been working to facilitate access to skilled nursing facilities (SNFs) for people with bleeding disorders on Medicare. The Alliance worked with NHF on a survey of HTCs social workers to garner more data on the issue. Representatives of NHF and the Alliance met with leaders of the Centers for Medicare and Medicaid Services (CMS) to discuss the issue and submitted a comment letter on the SNF regulation released in 2019. We ultimately learned (as we suspected) that legislation would be required to change the policy. We have been working for the last few months to identify champions in the House and Senate to introduce legislation to allow SNFs to bill separately for bleeding disorders treatments. We will have an update for the community very soon about introduction of the bill.
The Alliance has been working with HRSA, OPA and the regional coordinators and directors to be able to give HTCs direction regarding when and how to register their outreach clinics and permanent clinical sites in the OPA database. We appreciate all of our colleagues who have been working with us to better define and resolve this issue. We hope to have an update for HTCs early in 2020.
As of this writing, Congress has finally reached agreement on final FY2020 funding bills. While Congress was unable to pass the twelve annual appropriations bills that fund the government before the start of the Federal fiscal year on October 1st, it did pass two short-term continuing resolutions (CR) to fund the government at current levels until December 20th to give them more time to consider year- long appropriations bills. The final Labor-HHS-Education spending bill includes level funding for the hemophilia programs and activities at CDC and HRSA and includes report language indicating Congressional support for activities at both agencies plus bleeding disorders-related research at NIH. Congress is expected to pass the appropriations bills, and the President is expected to sign it before funding expires at the end of the week.
Also in this Issue…
Notes from Joe
· 2019 Recap
· Legal Team Update – New Contact Information
· Foundations for Grant Compliance: Rules Exist Even When Ignored
Notes from the Community
· Emergency Guides Available
· Reminder: 2020 340B Program HRSA Grantee Recertification Period Begins in January
· Operations Update
· 2020 Meeting Schedule