Notes from Joe, June 2021

Notes from Joe

Working Together to Maintain Gold Standard Care
by Joe Pugliese

Last month, we focused on the mission of the Alliance and the provided background on the restrictions and requirements for recipients. This month, I want to discuss a few different areas where we can all work together to ensure that our gold standard clinical care can be maintained.

First, HTCs cannot hope to continue to produce the best outcomes if they do not listen to their patients. Accordingly, we’re delighted to promote participation in the Third National HTC Patient Satisfaction Survey (PSS), which you can find at: We hope all HTCs and chapters will encourage their patients and members to take advantage of this opportunity to talk to their providers. The deadline for the PSS is August 31, 2021 and the goal is to have more than 5000 patients from more than 90% of HTCs. The deadline is extended to give the largest possible numbers of HTC bleeding disorder patients/caregivers the chance to take the survey. It will also give additional time for our partners to spread the word. The Alliance has been providing financial support for the regional core centers for the last decade, through the annual Hemophilia Alliance Foundation grant funding.

Secondly, we all recognize the urgent need for a sufficient pool of healthcare professionals to maintain and expand patient care. Beyond the day-to-day clinical care, we also need to fund ongoing research for the bleeding disorders community. The Alliance is pleased to have participated in the HTRS research colloquium. The Resource Center for the virtual HTRS Research Colloquium: “Developing a Sustainable Research Career in Hemostasis and Thrombosis,” is now open. The Resource Center includes all full session recordings as well as the Meeting Booklet and we are pleased to be able to share this with Alliance members. To access, please visit: and use Username: HTRS and Password: HTRS2021.

Additionally, the Alliance has provided funding to ATHN since 2011 in support of the ATHN Data Quality Counts program. This important program provides funding to support data managers at HTCs to expand the amount of data contributed to the ATHNdataset and enhance the quality of data collected. Recently, we turned to ATHN to address a few questions related to our work on a new option for DDAVP intranasal spray. Although the data was helpful, it was clear that it did not represent the full complement of DDAVP related data in our US population. This highlights the fact that we need more participation in the ATHNdataset. Again, we encourage HTCs, chapters and individual patients to actively participate in contributing data to the ATHNdataset. It helps us all make better and more timely decisions about how to ensure we how we allocate the resources we have ensure the best outcomes for the community today and in the future.

Finally, we will have a DDAVP intranasal spray available for patients in at least 30 states by the end of July. Details about how to order the product and what we can do to facilitate reimbursement will be forthcoming. The product was made possible by the Alliance Board investing in funding the start-up costs associated with developing the product.

Also in this Issue…

Washington Update

Legal Update
· HHS Rescinds Advisory Opinion after Court Describes 340B Statute as Ambiguous as to Contract Pharmacies

Payer Update
· Hemophilia Treatment Center (HTC) Revenue Cycle Survey Response Reminder
· Cost of Dispensing Survey: We Need Your Help!

Alliance Update
· Update on Alliance Data Portal
· Harmony in Hemophilia Update

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