Advocacy Matters!
By Joe Pugliese

I’m writing this as we’ve just concluded our first-ever virtual Hill Day.  First, I want to thank the 60+ participants, who included representatives from Alliance member HTCs, chapters, NHF and HFA, and individual patient advocates.  We held more than 80 meetings with Congressional offices, where we educated staff about bleeding disorders, the importance of the HTC network, and asked for co-sponsors for the Hemophilia SNF Access Act (S. 3233 / H.R. 5952). We had a great reception on all of these issues, and have already added several new co-sponsors to the bills.  Shout-out to Team Alaska (John Palmatier and Matt Findley), Team Illinois (Heather Alvarez and Kimberly Casara), Team New York (Renee Czarniak, Laurie Reger, and Nathan Schaefer) and Team Wisconsin (Erica Brock, Stephanie Lovell, Jessie Pindilli and Ralph Woods), for successful advocacy with Sens. Murkowski and Gillibrand and Reps. Davis, Pocan and Rush. I’m confident we’ll add additional co-sponsors in the coming weeks.    

Our advocacy this week reminds me of a few things worth remembering.  One, is that despite everything else consuming the attention of policymakers these days, it is still very important that we continue to advocate on issues that matter to us.  No one but the bleeding disorders community can advocate for our SNF bill, for example, or for our continued access to 340B.  Two and relatedly, we also continue to experience lots of challenges to ensure access to high-quality care for our patient community.  None of these issues are helped by COVID, and some are exacerbated, as people lose their insurance coverage and need help finding new plans. We also continue to face challenges to our participation in the 340B program, some of which are explained in more detail in Issie’s article below.  This makes our continued advocacy even more important. 

When the Sanofi letter noted below came out on July 27th, we were immediately in contact with the company.  They have assured us their new policy does not apply hemophilia treatment centers. This message is very consistent with the long-standing support we have had from our manufacturing partners. We thank Sanofi this assurance and we are reaching out to all of our contract partners asking for the same assurance. Lack of access to 340B pricing through contract pharmacy providers would eliminate greater than 90% of the revenue for a significant number of HTCs across the country. Obviously, this would have a negative impact on patient care. 

Finally, I’m reminded again that our patients, providers and chapter and national organization partners make incredibly effective advocates.  This makes me confident that we can respond to our challenges. We face plenty of challenges, and undoubtedly other unexpected issues are lurking around the corner.  But I’m confident that together, we’ll be able to respond together to protect our patients’ access to the high-quality care provided by HTCs.  If you would like to join us in advocating on the Hill, or in any other setting, please let me know.  We’d be glad to have you join us!