In this Issue…

Notes from Joe
· New Hemophilia Alliance President & CEO Search Update
· Partners Physician Academy – Second Annual Meeting held in Carmel Indiana on September 18, 2023

Advocacy Update
· What’s happening in Congress?

Payer Update
· In Good Times and in Trying Times

Notes from the Community
· Alliance Sponsors Reception for National Youth Leadership Institute (NYLI)

Alliance Update
· Did You Know…
· 2024 Meeting Schedules

Team Alliance Contact Information

• New Hemophilia Alliance President & CEO Search Update

by Joe Pugliese, President and CEO

As announced here in June, the Hemophilia Alliance has been actively searching for a new President & CEO to lead the organization starting January 1, 2024. The Executive Committee of the Board and I are serving as the search committee. We received almost 400 applications for the position.

The Alliance engaged BDO, a global accounting and human resources firm, to assist in the search and to assist with developing the job description and metrics to evaluate the candidates. The search committee held interviews at the BDC conference. We anticipate making the announcement of who will be the next Alliance President in the next several weeks.

I want to thank my fellow search committee members Eric Gray, Becky Burns, Steve Powell, and Dean Hindenlang. We worked together remarkably well. I would also like to thank the 400 people who applied. There were many amazingly talented people in the mix, who had demonstrated years of outstanding success in their fields. The finalists for the position are not only talented, but all have years of experience with the blood disorders community.

In other news, I am pleased to report that the three national bleeding disorders patient organizations – NBDF, HFA, and the Coalition for Hemophilia B – recently came together with an incredibly well written letter of support for bringing gene therapy to the community through the federally supported network of hemophilia treatment centers – the Gold Standard for care. Our community feels blessed with increasingly more effective products, which help produce better outcomes but to date do not offer a cure. Patients needing HTC clinical care continues to grow, including patients with mild and moderate disease and women who are symptomatic carriers. It is why I remind myself not to use the misleading phrase “federally funded network of centers,” since the average annual grant per center is a very modest $30,000 per year, not enough to pay the rent and keep the lights on. The cost to maintain and expand the center’s ability to provide clinical care is directly related to their ability to fund themselves.

Also, I read a very interesting article in the Wall Street Journal on September 11^th Generic Drugs Should Be Cheap, but Insurers Are Charging Thousands of Dollars for Them. Shockingly it was reported that horizontally integrated companies that own the insurer and the PBM charge upwards of 100 times the actual cost of the product. Over ten years ago, the Alliance leadership visited the FTC (Federal Trade Commission) and told them this is exactly what would happen. I wish I could claim some sort of brilliance. It is true I seldom miss the readily apparent.

CVS Health has long had sole source agreements with Florida and Arizona Medicaid, depriving the HTCs in those states the opportunity to serve their patients by dispensing treatments purchased using the 340B discount and to accrue any program income to invest back into clinical care. You have to wonder why a state Medicaid office or other insurer or employer (private insurance, self-funded plans, the Defense Department’s Tricare program) would sign an exclusive pharmacy agreement with one of these companies, but more often than not that is exactly what happens. Tricare is part of the federal government, and you would think as a matter of policy they would use federally supported health care centers. In the 17 years that I have worked with the hemophilia community Tricare has used a national for-profit commercial pharmacy exclusively.

As noted in the WSJ article, patients are being overcharged and many tell me that the service is not great. Things you would expect when there is no competition. Patients should demand to have the option to support the HTC network by getting their treatments from the HTC integrated pharmacy.

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• Partners Physician Academy – Second Annual Meeting held in Carmel Indiana on September 18, 2023

by Joe Pugliese, President and CEO

Amy Shapiro MD, Co-founding Medical Director of the Indianna Hemophilia and Thrombosis Center (IHTC), and a Partners Physician Academy Advisory Board Member, kicked off the 2nd Annual Partners Physician Academy. The Academy hosted 18 participants, who are fellows and junior faculty committed to classical hematology serving at HTCs in the US. The program is designed to give these ambitious young hematologists an exhaustive update on clinical and research efforts in the field, with a focus on the patient-centric care provided by the multidisciplinary team at an HTC. Importantly, the Physician Academy gives attendees the opportunity to network with a cross section of key bleeding disorders’ opinion leaders in the US.




There has been much discussion regarding the current physician leadership in the HTC community as they near retirement, and the lack of classical hematologists entering the field to replace them. The Partners Physician Academy represents a pragmatic solution to address this challenge by offering attendees an unprecedented opportunity to be mentored by some of the most recognized names in the bleeding disorders space.

The Hemophilia Alliance and The Alliance Pharmacy are delighted to cosponsor this critically important event with Partners and IHTC to make this event possible. As noted by Dr. Shapiro, “This wonderful program simply would not be possible without the generous support of the Hemophilia Alliance and The Alliance Pharmacy.”

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What’s happening in Congress?
by Artemis Policy Group, Hemophilia Alliance Advocacy Consultants

Congress returned to Washington after Labor Day with a jam-packed schedule for fall. Top of mind for everyone is the September 30^th deadline to fund the federal government by passing all 12 appropriations bills for fiscal year (FY) 2024. If lawmakers do not act in time, Congress could pass what is known as a continuing resolution (CR), which would fund the government at current FY 2023 levels until next year’s funding bills are passed, or we could see a government shutdown.

For the bleeding disorders community, the appropriations bills include funding for the U.S. Department of Health and Human Services (HHS) Health Resources and Services Administration (HRSA) HTC Grant program, the Centers for Disease Control and Prevention’s HTC and Hemophilia Education grant programs, as well as for the National Institutes of Health and biomedical research funding.

In addition to the funding bills, the House is moving forward on a package of bills introduced as HR 5378 which includes the reauthorization of a number of federal programs also set to expire on September 30^th, including community health center funding and the National Health Service Corps, as well as many of the bills related to the practices of pharmacy benefit managers (PBMs) and Medicare and Medicaid transparency. While some provisions of the bill have bi-partisan support others do not, so it is unclear if the bill will move in its current form. A planned vote on the package was tabled, so the path forward and timing are up in the air as of this writing.

While 340B reform ideas continue to be floated to Congress, we are yet to see any bills introduced. We are watching the group of Senators who sought input on their Request for Information on contract pharmacy issues, since they may start working on a bill. We continue to monitor the situation to make sure that any proposed policies don’t harm HTCs. The Alliance Advocacy Committee is also working to evaluate various policy options that could address HTC challenges. More to come on those!

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In Good Times and in Trying Times
by Jeff Amond, Director Member & Community Relations

I was reminiscing a few weeks ago about my 6-year work anniversary with the Hemophilia Alliance and for whatever reason I started thinking about how my work on the Member and Community Relations Team was like a marriage. As odd as that statement sounds, it does make sense. We are here for HTCs in good times and in trying times. A real-life example of this is an HTC that I have been working with for the last 6 years. For much of that time, they were doing quite well. The HTC’s pharmacy had good market share and the larger hospital system had a good understanding of how the HTC and larger hospital system could be partner in the bleeding disorder space. Even though they didn’t need much assistance from me over the last 5 ½ years, I felt it was very important to develop and maintain a good working relationship with the HTC staff and larger hospital system. Our communications resulted in a good understanding of the services and support offered by the Hemophilia Alliance. Additionally, they developed trust in the Hemophilia Alliance as a member organization. This trust led them to reach out to us when Trying Times hit the HTC.

The Trying Times were directly related to the exclusive relationships that several of the major insurers in the area put in place with PBMs and Commercial Specialty Pharmacies that actively excluded HTC pharmacies from their networks. These exclusions drastically impacted the HTC’s pharmacy program’s market share. The HTC recognized that it needed additional help to stop this from continuing to occur. Currently, we are working with this HTC to enable them to provide pharmacy services to the patients that had to be dropped from the program, returning meaningful program income (over 3.5 million units of clotting factor along with over 20,000mgs of Hemlibra) to the HTC.

Please remember, The Hemophilia Alliance works for you in Good Times and in Trying Times. Please contact us to see how we can work together to grow your pharmacy program business and market share.

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Alliance Sponsors Reception for National Youth Leadership Institute (NYLI)
by Karen Bowe-Hause, Director Member & Community Relations

The Hemophilia Alliance was pleased to sponsor the NYLI reception at the Bleeding Disorders Conference in August. The speakers at the event were invited by the Hemophilia Alliance and represented a variety of clinical and non-clinical positions at HTCs. The goal was to help NYLI members understand that they can find engaging and rewarding careers in health care that are both within and outside the traditional clinical roles.

NYLI provides young people (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth, effect change, and positively influence others. NYLI is a two-year program designed to assist young people from the bleeding disorders community in becoming well-trained, recognized leaders. In addition, NYLI provides an amazing opportunity for youth to learn and share experiences of living with a bleeding disorder. NBDF achieves these outcomes by providing young adults with training, support, and opportunities to provide education to the bleeding disorders community.

The Hemophilia Alliance would like to thank all the HTC staff who led the conversations at this session and send a special thank you to the wonderful group of young adults who shared their time with us. Participants from our member HTCs and the Alliance included the following:

Listed below are quotes from several of the HTC and NYLI participants:

“The young adults in this NYLI cohort are incredibly bright and thoughtful – just WOW! They each have exciting and impactful futures ahead. I left the Alliance NYLI Career session feeling inspired by the young adults and my HTC colleagues. 10/10 would do it again.” Eleanor Carrick, Regional Administrator, Mountain States Hemophilia Network.

“It was an honor to meet with the NYLI group at BDC! Although I was invited to share insights about my job role at our HTC, I ended up walking away richer from meeting and learning from these empowered young men and women. The future of the bleeding disorders community is in good hands with these young leaders!” Eric Iglewski, LMSW, Mary M. Gooley Hemophilia Center.

“It was great to meet the NYLI group comprised of such bright, motivated, and kind individuals. To hear their experiences within NYLI- both how the program has helped shape them and how they have helped shape their unique cohort, was impressive and inspirational. It was a pleasure to share about my career; to learn more about the careers of my colleagues and hear about the next steps in the journeys of the NYLI members. Thank you to the Hemophilia Alliance for organizing this session!” Becca Shaheen, HTC

NYLI Participants

“I loved just networking, talking, meeting everyone and loved connecting with others in the community! I really liked talking with the Hemophilia Alliance group especially since I was in a group with social workers, and we really bonded on talking about the importance of mental health.”

“Personally, I learned of many great opportunities that I did not know were available and gained many business cards to help connect back with the wonderful people I met! I wish we had a bit longer in both of these sessions as I did not get to speak to as many people as I would have liked, and often our conversation was cut short due to having to switch places. Overall, I really liked these sessions and would 1000% participate in them again!”

“As for the session at the tables in the atrium, it was also nice! I loved the representation in terms of distinct fields and disciplines. It was a great opportunity for them too, to learn about NYLI. One woman told me she would be advertising the program back at her HTC!! Great programming with these two sessions 😃”

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Did You Know…
by Marketing & Operations Team

As a benefit for being a Member of Hemophilia Alliance, you can request for a login of your own to (1) have the ability to register for our meetings and webinars (2) be on our mailing lists for meeting/event updates and monthly newsletters, (3) access our member-content portal (aka Document Portal) that contains large libraries of information, and (4) know who your primary contact at the Alliance is.

• To request for a login, just simply hop over to our website (https://hemoalliance.org) and click on “Join”. Once your registration is approved, you will then receive an email confirmation. Please make sure to keep this login credentials handy as you are required to login when registering for our member-only meetings and webinars. (Tip: If you are not using a public computer or you are not sharing a computer with your co-workers, you can save the credentials to your internet browser for future quick access.)


• Once your registration is approved, you will also be automatically added to our mailing lists so you will never miss out on any of our email campaigns or monthly newsletters. Please don’t forget to whitelist us or check your junk folder in case the email gets stuck in there.
• With the same login credentials that you have, you can register for meetings and webinars by simply selecting the appropriate meeting or webinar that you’d like to attend (Please make sure that you are logged in first before registering for our meetings/webinars). All the meetings and webinars can be found in the “My Dashboard” under the “See Events” button or from the “Events” menu bar.


• While you are on the Main “My Dashboard”, you can also access our “Document Portal” by clicking on the “Go To Portal” button or by selecting “Document Portal” from the Documents & Media menu bar. You will find past meetings, webinars presentations and recordings in there.


• Also on the “My Dashboard” page, you can find out who your Alliance primary contact person is. Just click on the “My Alliance Contact” from the menu bar or from the “View Map” button under Member Map. Please notify us if there are any contact changes at your center by clicking on the “Center Contact Update” from the menu bar. So check these out when you have a moment!



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   2024 MEETING SCHEDULES   

Meeting	Date
Board Retreat Pharmacist CE Conference [Register Now!]	January 7 – 9 January 24 – 26
Linda Gammage Social Worker CE Conference	February 28 – March 1
New HTC Staff Orientation [Register Now!]	March 25 – 27
Spring Members Meeting and Hill Day	April 15 – 18
Nurses CE Conference	June 10 – 12
Physical Therapist CE Conference	August 12 – 14
Fall Members Meeting	October 9 – 11
Physicians and Business Administrators Meeting	November 13 – 17

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Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

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