Alliance Update
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- How will you be spending World Hemophilia Day this April 17th, 2024?
by Marketing & Operations Team
The Alliance is inviting all our members to register for the Hemophilia Alliance 2024 Spring Member Meeting & Hill Day that will take place on April 15th – 18th in Washington DC. We are excited that this year’s Hill Day falls the day after World Hemophilia Day.
We encourage Alliance members to invite patients to join us on Capitol Hill! More patients equal more voices to help educate Senators and Representatives about bleeding disorders, HTCs, and the importance of the 340B Program to our community. Please note that patients’ airfare, and accommodations in D.C. will be paid for by the Hemophilia Alliance.
Additionally, on April 17th we are excited to be throwing a very special celebration for Joe Pugliese. For over 45 years, Joe diligently served the bleeding disorders community, and this will be a great opportunity to show our appreciation for all of Joe’s hard work and to wish him the best in his retirement.
Please click
here to register for the Spring Member Meeting & Hill Day because this one-of-a-kind 3-in-1 event will not be something you want to miss!
| MEETING |
DATE |
| Linda Gammage Social Worker CE Conference |
February 28 - March 1, 2024 |
| New HTC Staff Orientation |
March 25 - 27, 2024 |
| Spring Members Meeting and Hill Day [REGISTER NOW] |
April 15 - 18, 2024 |
| Physical Therapists CE Conference [REGISTER NOW] |
May 15 - 17, 2024 |
| Nurses CE Conference [SAVE THE DATE] |
June 10 - 12, 2024 |
| Fall Members Meeting |
October 9 - 11, 2024 |
| Physicians and Business Administrators Meeting |
November 14 - 17, 2024 |
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Advocacy and Legal Team Update
Senators Release Draft Legislation to Reform the 340B Program: the SUSTAIN 340B Act
by Elizabeth "Issie" Karan, Legal Counsel and Artemis Policy Group
Earlier this month a group of bipartisan Senators released draft legislation focused on reforming the 340B Discount Drug Pricing Program. The Senators are seeking feedback on the legislative text from stakeholders interested in the program and they released an
explanatory statement and
request for information with questions regarding reform of the 340B Program. Responses are due April 1, 2024.
Describing themselves as “long-time supporters of the 340B program,” Senators John Thune (R - SD), Debbie Stabenow (D-MI), Shelly Moore Capito (R-WV), Tammy Baldwin (D-WI), Jerry Moran (R-KS), and Benjamin Cardin (D-MD) released the draft bill and stated that they “believe it is necessary to pass legislation in the 118th Congress that provides clarity, transparency, and accountability in the 340B program in order to ensure the program remains strong, long into the future.”
According to the Senators, the ‘‘Supporting Underserved and Strengthening Transparency, Accountability, and Integrity Now and for the Future of 340B Act’’ or the ‘‘SUSTAIN 340B Act’’ aims to address several key areas of policy in the 340B Program, including contract pharmacies, affiliated sites, transparency, and the patient definition. Citing comments from stakeholders and recent court decisions, the Senators state that they need more information to clarify the legislative text. Several of the proposals in the legislation, such as user fees for program participants and the use of a clearinghouse in Medicaid, have surfaced previously in 340B reform discussions. Other proposals are less developed – for example, the patient definition section simply reads “TBD.”
The Alliance plans to respond to the RFI. Our initial analysis recognizes some beneficial provisions and others that raise concerns. We applaud the protections the draft bill provides covered entities against discriminatory reimbursement and other practices by payers which limit the benefits of 340B for covered entities and the affirmation of the use of contract pharmacies in the program. However, the current draft bill bases user fees in the 340B Program on the size of the 340B discount off wholesale acquisition costs – this could be very costly for HTCs. Given the number of hemophilia treatment centers (HTCs) in the program, their low volume of prescriptions, and the proportion found to have program integrity issues (when compared to other covered entity types), we believe this approach requires HTCs to pay more than their fair share.
The Alliance will continue to analyze the SUSTAIN 340B Act and provide comments accordingly. Please reach out with questions or concerns.
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Member and Community Relations Team Update
Gene Therapy – Hemophilia Alliance Network Services (HANS) Opportunity
by Zack Duffy, Director MCR and Roland Lamy, VP Payer
We are excited to announce that HANS has negotiated two national contracts for gene therapy ensuring HANS members can be reimbursed for gene therapy infusions. The contracts are with Emerging Therapy Solutions (ETS) and EVIO. While these entities are separate, they are intertwined as both provide solutions to Synergie, a collective of Blue Cross and Blue Shield companies and their affiliates.
Emerging Therapy Solutions (ETS) has historically created networks for organ transplants and through these specialized networks has expanded into gene and cell therapies. They partner with payors and healthcare institutions. ETS is an established network that works with multiple payers and reinsurance groups. EVIO is a pharmacy solution company that is owned by Blue Cross Blue Shield of Massachusetts, Blue Cross Blue Shield of Michigan, Blue Shield of California, Highmark inc., and Independence Blue Cross.
Both entities are excited to work with Hemophilia Treatment Centers ensuring patients have access to current gene therapy options. While the agreements are similar, they have their operational differences. If you are a member of HANS your primary contact at The Hemophilia Alliance will be reaching out to you shortly to review the negotiated rate, terms, and conditions as well as collect important data regarding gene therapy readiness or plans for readiness. EVIO and ETS are aware that HANS continues to grow and HTCS will be added over time. If you have not yet signed the HANS agreement and would like to do so, please discuss this with your primary Hemophilia Alliance contact. We will be hosting a webinar regarding the ETS relationship and current HANs contracts, so please keep an eye out for future communication.
We have also utilized the gene therapy conversation to ensure that HTCs can be considered in network for factor products further strengthening the value of being a HANS member to your pharmacy program. Remember, becoming a member of HANS does not commit you to participating with every payer, participating HTCs always have the option to “opt-in” to any offer presented as a participating HTC.
The Hemophilia Alliance continues to support HTCs in negotiating Single Case Agreements and for gene therapy. If you have a gene therapy infusion in the pipeline, whether Medicare, Medicaid or commercial please let us know as we are here to work alongside you for successful implementation.
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Notes from the Community
4th Annual HTC Unite for Bleeding Disorders National Walk Challenge Launch and Registration Promotion!!
by Karen Bowe-Hause, Director MCR
Hemophilia Alliance is again collaborating with NBDF in support of their 2024 Unite for Bleeding Disorders National Walk campaign and is launching the 4th annual HTC Wall of Walkers Challenge. This initiative aligns with our vision of creating a cohesive collaboration between our HTC’s, Chapters and National Organizations. Our goal is to increase HTC participation in the NBDF Walk program to provide support for local Chapters. We will publish the 2024 Walk schedule in the near future. NBDF has created re-stickable vinyl decals (sample shown below) that can be distributed to your patients during routine clinic visits to encourage support for your walk. Please use this link If you would like to request vinyl decals for your Center.
https://forms.hive.com/?formId=FCuvHs35FjaT5SDMP
All Alliance member HTC participating teams will be acknowledged on the HTC Wall of Walkers located on the Unite Day landing page on NBDFs website as well as on the Alliance website. The HTC team name along with photos or a logo will be featured in a scrolling fashion and the site will be continuously updated throughout the walk season. In addition, a $1000 travel grant will be awarded to 5 member HTCs raising the most funds for their local Chapters, to offset expenses to send a staff member to the 2025 NBDF Bleeding Disorders Conference, location to be shared as soon as that information is made available.
Registration Promotion!!
The first 5 Alliance member HTCs that register a Walk team for the 2024 Unite for Bleeding Disorders National HTC Walk Challenge will receive a $250 campership donation to the camp of their choice!! The registration challenge promotion will run through
March 15, 2023! Get moving now and get your team organized and registered!! Good Luck to all!!!
Click here to register
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