Notes from Joe, May 2023

Notes from Joe

by Joe Pugliese, President and CEO

The World Health Organization recently declared an end to the Covid pandemic, I think the same week there was a superspreader event at a 340B Grantee meeting in New Orleans. What is clear is everyone is done with the pandemic, although it is not necessarily done with us.

Since last month’s issue, I have been to San Francisco, Manhattan Beach and New York City. Heading into the summer there are three more meetings on the schedule. All are in DC, our Hill Day June 12th and 13th, 340B Coalition Meeting July 10th -12th, NHF Bleeding Disorders Conference celebrating its 75th Anniversary.

We celebrated the 25th Anniversary of the Linda Gammage Social Worker Conference in San Francisco. The program has been funded by CSL Behring since its inception. A big shout out to CSL’s Paul Perrault, the outgoing CEO, and Paul McKenzie, the new CEO, who both sent messages of ongoing support for this wildly successful program. If you have never seen or have not watched the film, Bad Blood, you should. I recently watched it and took a deep breath, reminding myself of what has informed the bleeding disorders community over the last 40 years. The Social Worker Conference included a visit to the National Aids Memorial. I strongly recommend you go if you have not had the opportunity. We dedicated a rock to Linda Gammage, the visionary behind the social worker meeting. It was a great group.

I traveled to Manhattan Beach next to the Region IX meeting, hosted by CHLA. They set a record for in-person attendance. Heidi Lane was grateful for the opportunity to attend the meeting as an invited speaker. She shares the following, “The agenda, being quite robust, focused on cradle to grave topics on women, girls, and people with potential to menstruate who are living with bleeding and clotting disorders. The meeting format provided attendees the opportunity to network, expand knowledge and participate in thoughtful discussions around issues facing the patients and families we serve.”

The following week we had our third new staff member meeting in New York City. We are very appreciative of our two corporate sponsors CSL Behring and Takeda. There were 70 attendees from 40 treatment centers. We had an excellent mix of healthcare professionals, including docs, APNs, nurses, physical therapists, pharmacists and social workers, as well administrative staff including those that work in billing and collections.

The presentations were largely handled by Hemophilia Alliance staff. The staff has 310 years of experience in the bleeding disorders community. Two board members Becky Burns and Heidi Lane presented on, being an independent HTC and the HRSA Grant regional structure, respectively. While Kate Colbath from Partners presented on how her organization support the USHTCN and the larger bleeding disorders community. These three presenters had a total of 45 of years in the bleeding disorders community.

The 70 attendees at the Alliance Meeting had a total of 86 years’ experience and average of 1.2 years. This is the third meeting of its kind in the last 15 months. We all recognize the high degree of turnover at our centers, these meetings are critical to helping staff across disciplines and the country get up to speed quickly on the complex business of operating an HTC, the gold standard of care for the bleeding disorders community.

Also in this Issue…

Notes from the Community
· Announcing: The 4th Annual Innovation Grant
· HTC DSCSA Update
· Not Your Ordinary Mascot!
· VWD Connect Foundation July Conference – Patient Registration Still Available!

Alliance Board Update
· New Board Members

Washington Update
· COVID-19 Public Health Emergency Ends – Impact on Medicare & Medicaid

Alliance Update
· Alliance Member Needs Assessment – Your Participation is Needed
· Upcoming Alliance Meetings

Payer Update
· Audits – We are here to help!

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