Notes from Joe, November 2020

Notes from Joe

The Light at the End of the Tunnel

By Joe Pugliese

The big news has to be the recent announcements by Pfizer, Moderna and Astra Zeneca about their COVID-19 vaccine clinical trials. These positive results highlight the advantages of having a robust pharmaceutical industry. It is also a success for Operation Warp Speed, a federal program to accelerate vaccine development organized by the Department of Health and Human Services. The program started the end of March and we are now seeing the positive results of this unprecedented effort. Apparently lack of options creates clarity of mind. At the same time, it is clear we are not out of the woods yet. Everyone is clearly tired of the pandemic. I completely understand, but please, WEAR A MASK and keep your distance. The goal is to be here for Thanksgiving and Christmas 2021!

The other big news has been the election. Like so many other things in 2020, this election was unlike any other. Both presidential candidates received more popular votes than any other candidate in history and there were millions of first-time voters. We won’t know who controls the Senate until the two Georgia runoffs in January. In the meantime, our advocacy work continues: we are still working to get the skilled nursing facility legislation passed in the current lame duck session. We are also coordinating with other covered entities to try to identify a common set of priorities that would help safety net providers, like HTCs, stretch scarce federal resources and use those funds to maintain and expand clinical care for at risk populations. Some self -proclaimed “experts” suggest that stretching scarce federal dollars as a vague idea. But, the results of the recent Patient satisfaction with US Hemophilia Treatment Center Care, Teams and Services: The First National Survey indicate that the thousands of patients seen at HTCs do not see their medical care funded in large part through the 340B program as some vague idea. They enjoy the benefits of an expert, comprehensive care team and the resulting dramatic reductions in mortality and morbidity.

Earlier this year, we detailed a variety of overreaching policies launched by a number of pharmaceutical companies to create barriers to covered entities accessing 340B priced drugs. I must reiterate that our manufacturing partners have for the most part not been engaged in these activities but rather, have been uniformly supportive of HTC access to 340B. One company did launch an initiative and they were quick to assure us in writing their actions did not apply to HTCs. We thank all of our partners and remind them how critical their support is to allowing HTCs to maintain and expand care for the bleeding disorders community.

The challenge and opportunity as I pointed out in last month’s Newsletter was expanding the market share of HTCs nationwide. One way to do that is to have happy, healthy patients, per the patient satisfaction survey above. Another way is to do is to work closely with patient advocacy organizations. This recent press release from the National Hemophilia Foundation highlights the benefit of using the hemophilia treatment centers as the gold standard of care, not just to save costs but also to provide optimal patient care. Speaking of NHF, I also wanted to share this lovely letter that we got in recognition of our financial contributions. We are only able to make donations to bleeding disorders organizations due to you, so I want to be sure that you get the thanks, as well.

Finally, this edition includes a story very familiar to the bleeding disorders community: Drs. Rebecca and Ryan Bialas find answers to their prayers and a solution to their child’s plasminogen deficiency at – of course – a federally-supported hemophilia treatment center. Next month we will focus on the ways that Alliance is focused on lowering the cost and the aggravation of getting paid for the services you provide.

Also in this Issue…

Legal Update
· HHS Continues Its “Regulatory Sprint”

Washington Update

Payer Update
· Payer Update: 35 and Growing!

Notes from the Community
· Plasminogen Deficiency Foundation Launched

Alliance Update
· Announcing Our New Board Member
· 2021 Meeting Schedule