April 2023 Newsletter


In this Issue…

Notes from Joe
· Dateline: Orlando, Florida

Washington Update
· Reminder: Register for the June Hemophilia Alliance Hill Day!

Legal Update
· 340B Contract Pharmacy Services Agreement: Some Rules and Many Pitfalls

Alliance Update
· We Need Your Help: Look for the HTC Needs Assessment

Payer Update

Notes from the Community
· The Hemophilia Alliance Foundation Update: 2023 Project/Patient Assistance Grants
· NHF – 2023 Unite for Bleeding Disorders National Walk and the HTC Wall of Walkers Challenge
· Update on FAIR Time for Women
· Webinar Announcement from the Foundation for Women and Girls with Bleeding Disorders

Team Alliance Contact Information

Notes from Joe

Dateline: Orlando, Florida
by Joe Pugliese, President and CEO

Over the last two months HTRS, Coalition for Hemophilia B and the Hemophilia Federation of America all had their annual meetings at the Renaissance Sea World in Orlando, FL. I made two out of three meetings since I was in DC for NHF’s Washington Days during HTRS. Everyone seems genuinely happy to see old friends and make new ones. Speaking of new friends, I want to welcome Dan Kelsey, the new President & CEO for the Hemophilia Federation of America. Dan is new to the bleeding disorders community, but I had the chance to have dinner with him last week. We look forward to working with Dan and his organization.

Leading up to the meeting we were contacted by a new group named FAIR, please see the community news section for more information about the goals and objectives of this organization. We met with the leader of the organization Ashley Gregory. She had outlined for me in an email the objectives of the organization. I encourage you to read through their outline. One of the early inquiries was about expanding the knowledge and access to MSKUS diagnostic tools. I immediately reached out to Annette Von Drygalski MD, Medical Director of the HTC at UCSD. As many of you know she has been running an outstanding program specifically to teach health care professionals how to make the best use of this diagnostic tool. The May newsletter will feature the work they have been doing in San Diego.

I wish Ashley and her colleagues well. I encouraged them to develop and submit a grant proposal for the upcoming Hemophilia Foundation Innovation grant cycle. I do have reservations about creating another organization in a time of decreasing funding. This is especially true when many of the already established organizations are working hard to address these very same issues. Of course, it is not up to me, but I ask people to be thoughtful about how we invest our resources. Ashley wants to ensure that all of this innovation is brought into daily use at HTCs across the country.

Two other things jumped out at me from the two patient organizations’ meetings. The first was the many healthcare professionals at the meetings who were featured speakers. This is a great change in programming. I have had many conversations with patients who are dissatisfied with their treatment. They do not feel like their concerns are heard. Like the group above, they express concern about access. I do not dismiss their concerns; I do, however, point to the willingness of the healthcare professionals to constantly strive to do better. I am never disappointed when I sit in on these sessions and listen to the incredible progress that this community has made in a remarkably short period of time.

A long-time sporting event at these meetings is watching the relentless marketing of patients by some specialty pharmacy representatives. I have received several hilarious post meeting summaries of some of the tactics employed to get patients onto their service. The patient organizations have over time created rules regarding the “do’s and don’ts” of promoting or selling to patients and their families. I can only assume the organizations created these guidelines because they saw a need to curb these behaviors. I had a post meeting discussion with a chapter leader, who acknowledged the problem. There is a reluctance to take any action to discipline people or companies who do not adhere to the rules. I was asked what I thought, which is: if you create these rules, then you should be prepared to enforce the rules. The “punishment” needs to be adequate to deter the behavior. If you aren’t prepared to enforce the rules for those who insist on breaking them, then you’re effectively punishing the people and companies who abide by them.

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Washington Update

Reminder: Register for the June Hemophilia Alliance Hill Day!
by Johanna Gray, Advocacy Consultant

Hi, all! We really hope to see you at the Alliance Hill Day in June! There is SO much going on in Washington and it is so important that Alliance members come to DC to tell your story. From groups releasing principles for 340B reform that would be very harmful to HTCs, to potential action on copay accumulator adjustors in the House and the Senate, as well as policies that could affect access to Medicaid, which we know covers about a third of the bleeding disorders population… we need you to join us in DC!

We’re headed back to the Hill IN PERSON! Please join us for the 2023 Hemophilia Alliance Hill Day, June 12th & 13th in Washington, D.C. All Alliance members and their patients are invited to join us to advocate for the bleeding disorders community. See below for more details.

When: Monday, June 12th & Tuesday, June 13th 2023 (Training on the evening of 6/12, Hill meetings on 6/13)

Why: Since there are so many new Members of Congress and staffers, we will be educating Senators and Representatives and their staff members about bleeding disorders, HTCs, and the importance of the 340B Program to our community. We need your help to ensure policymakers understand our issues and continue to support the comprehensive care model for patients with bleeding and clotting disorders for years to come.

Who: We hope that many Alliance members will participate. We encourage you to also recruit a patient* from your center to join you.

Next Steps: Please click here to register to participate. The deadline for registration is MAY 12, 2023.

Any questions? Please contact Johanna Gray at jgray@artemispolicygroup.com or 703-304-8111.

*Patients airfare, accommodations and ground transportation in DC will be paid by the Hemophilia Alliance.

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Legal Update

340B Contract Pharmacy Services Agreement: Some Rules and Many Pitfalls
by Elizabeth “Issie” Karan, Legal Counsel

Controversy abounds in use of contract pharmacies in the 340B Discount Drug Pricing Program with 22 manufacturers restricting their use and/or requiring extensive data reporting from most covered entities. Luckily, and with some hard work from the Alliance team, HTCs have been exempted from these challenges. However, contract pharmacies still do not mean a free lunch. Some concrete rules exist from the 2010 Contract Pharmacy Services Guidance. Perhaps more importantly, however, is ensuring that the operational realities of the relationship work for your HTC.

The Contract Pharmacy Guidance outlines ten requirements for a Pharmacy Services Agreement (PSA) in the 340B Program. Given the long history of this guidance, most PSAs include these components. Therefore, it’s important for your legal counsel to ensure they are included but that is not the end of the story.

Operational components of PSAs should be closely reviewed. These often are codified in addenda to the agreement and describe how the program actually works. Importantly, these indicate when and how the parties will be paid. Additionally, in a virtual replenishment model, the description of operations will delineate that process for HTCs getting credit for their 340B prescriptions. HTCs should review these descriptions closely. Oftentimes, the operations will leave out concrete timelines for replenishments which could be a disadvantage for HTCs. For example, HTCs should get credit for prescriptions ordered by its program, regardless of when the contract pharmacy or its vendor actually wants to accrue those prescriptions to HTC accounts. We have heard of problems arising in the field when the pharmacy or its vendor sits on replenishments or fails to account for them entirely. This problem can significantly negatively impact the financial benefits of the relationship and may create significant work for the HTC.

HTCs have the most leverage to ensure operations work for them prior to entering into an agreement. After the agreement is signed, few incentives exist for contract pharmacies to accommodate the HTCs’ requests. Make sure you are imagining how the steps of the relationship will proceed and get the agreements reviewed by legal counsel BEFORE signing them.

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Alliance Update

We Need Your Help: Look for the HTC Needs Assessment
by Theresa Parker, Administrator

As we continue to strive towards providing the best possible services and resources to our community, we are conducting a needs assessment for our member HTCs. The purpose of this assessment is to gain insight into the needs and expectations of our member HTCs and to identify areas where we can improve and better serve you. We value your input and feedback and we would like to encourage all member HTCs to participate in this process. We want to hear from you about what you think is important, what works well, what could be improved and most importantly if the services we provide are working for you. Your input would help us to identify priorities and make decisions about how to allocate our resources. We also want to make sure you are taking advantage of our relationships with the Hemophilia Alliance Foundation, The Alliance Pharmacy (TAP), and the Hemophilia Alliance Network Services (HANS).

The needs assessment will be delivered to your mailbox in May 2023. We would like to ask that you complete it and get it back to us as early in the month as possible so we can collate all the responses and have some information to share in the July 2023 newsletter.

Thank you for your ongoing support and involvement in our bleeding disorders community!

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Payer Update


by Jeff Blake, Senior Vice President Member & Community Relations

The Hemophilia Alliance Team continues to develop and enhance our payer relations and contracting opportunities to bring business back to our member HTCs and their pharmacy programs. We have accomplished a lot, but there is so much more that we can do. Below is a summary of the results of bringing business back to HTC pharmacy programs since 2018.

Total new units 1/1/2018 – 12/31/2022 42,683,000
Current opportunities/potential new units 73,859,000

To continue our success and bring more business to HTC pharmacy programs will require teamwork. Payers are contacting us daily to discuss potential solutions to better manage and contain the cost of bleeding disorders care. As you know, we tell payers the best solution is to have an integrated model of care that our member HTCs provide that includes medical and pharmacy services. Payers are listening to our message and bringing more potential opportunities to us. The chart above speaks for itself – in 5 years we have been able to redirect over 42,000,000 units to HTC pharmacy programs and we currently have payer opportunities of almost 74,000,000 units. If we were able to transition these units to HTC pharmacy programs at $0.25/unit margin new pharmacy revenue would be $18,500,000.

So, what do we need to do to bring more business to HTC pharmacy programs? Two things come to mind:

  1. We must be responsive to payers to finalize potential opportunities. We typically have 7 – 10 business days to respond to payer opportunities. How can you help? When a member of the Hemophilia Alliance team contacts you about an opportunity to grow your pharmacy business, be responsive so we can respond in a timely manner to payers.
  2. Review and sign the Hemophilia Alliance Network Services (HANS) PPO Agreement. We will work with you and your contracting/legal teams to finalize this agreement. This agreement will provide you the opportunity to participate in payer contracts that we have negotiated. We currently have 43 members that have signed the HANS PPO Agreement and, as a result, have had success negotiating agreements with regional payers in pockets of the country. To have an effective national network of HTCs and their pharmacy programs we need at least 80 members to sign the HANS PPO Agreement. As HANS continues to gain momentum, we want all of our member HTCs to have immediate access to available contracts in order to continue providing the best care and service to HTC patients. Please reach out if you or anyone at your institution has questions about this opportunity.

To learn more about our payer activities, please contact me at jeff@hemoalliance.org or a member of the Hemophilia Alliance Team.

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Notes from the Community
  • The Hemophilia Alliance Foundation Update: 2023 Project/Patient Assistance Grants
  • by Amy Marquez, Board Member, Hemophilia Alliance Foundation

    The Hemophilia Alliance Foundation has been administering grants to eligible organizations since 2013 thanks to the generous funding from the Hemophilia Alliance and The Alliance Pharmacy. The goal of these grants is to enable organizations to build capacity to carry out their mission and to directly support consumer financial assistance programs.

    Last month, the Hemophilia Alliance Foundation Board of Directors met via zoom to review, score, and vote on this years’ applications for project and patient assistance grants. It’s a fun job to be able to give away money, as can be seen by all of our smiling faces! Especially knowing the funds are going back to support the inheritable blood disorders communities!

    For the 2023 grant period, we were able to award grants to 76 organizations overall, totaling $747,575 in funds. This included 45 local chapter/organizations, 19 Hemophilia Treatment Centers, 6 national organizations, and 6 of the Regional Core Centers.

    This year we saw an increase in the number of applications for funding to help send patients, families, or staff to some of the many great conferences that are now taking place in-person again versus the past couple of years, or to help local HTCs, foundations, or regions host their meetings or retreats again in-person.

    The grant cycle for Project/Patient Assistance runs April 1st to March 31st.

    Also, our 2023 Innovation Grant cycle will be coming soon. Look for the announcement in the next few weeks. The Innovation Grant is a large grant up to $50,000.

    For more information about the Hemophilia Alliance Foundation or our grant opportunities, visit our website!


  • NHF – 2023 Unite for Bleeding Disorders National Walk and the HTC Wall of Walkers Challenge
  • by Karen Bowe-Hause, Director Member & Community Relations

    The Hemophilia Alliance is again collaborating with NHF in support of their 2023 Unite for Bleeding Disorders National Walk campaign and is launching the 3nd annual HTC Wall of Walkers Challenge. This initiative is meant to build upon the goal of enhancing relationships and collaboration between HTCs and Chapters. The objective is to increase HTC participation in the NHF Walk program to provide support for local Chapters. Attached is the current 2023 Walk schedule, indicating HTCs that have registered teams thus far. We have encouraging statistics from NHF that lead us to believe this year will be the best year yet for our Wall of Walkers HTC Challenge.

    March 2022 Chapter member registrations – 272
    March 2023 Chapter member registrations – 622
    An increase of 129%

    March 2022 Chapter Team Captains registered – 73
    March 2023 Chapter Team Captains registered – 185
    An increase of 153%

    In 2022, 41 HTC teams participated in the Unite Walk Wall of Walkers Challenge. These 41 teams recruited more than 300 fellow staff members to participate as walkers and together raised more than $40,000 for local Chapters! Since Walks do not start in earnest until next month, we are hopeful we will see an increase in HTC registrations later this month and beyond. Watch for updates on a regular basis.

    Once again, NHF has created Walk magnets that can be distributed to your patients during routine clinic visits to encourage support for your walk. If you would like to receive magnets, please send an email with your request to karen@hemoalliance.org and I will pass along your information to NHF. Please include the following information in your email:

    Name
    HTC name
    Address where you would like the magnets sent to
    Number of magnets you are requesting

    As a presenting sponsor, the Alliance has the opportunity to address the crowd at the beginning of each Walk. Your primary contact will reach out to you, prior to the local Walk in your area, to let you know if he/she will be available to attend the Walk and if so, coordinate details to highlight the HTC in attendance and support of the local Chapter during their opening remarks.

    All Alliance member HTC participating teams will be acknowledged on the HTC Wall of Walkers located on the Unite Day landing page on NHFs 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 travel grant to the 2024 NHF Bleeding Disorders Conference will be awarded to 5 member HTCs raising the most funds for their local Chapters. The location of the 2024 BDC will be shared as soon as that information is made available.

    REMINDER TO TEAM CAPTAINS: Take a photo of your team, regardless of how large or how small, and email to me (karen@hemoalliance.org) so we can add your team to the Wall of Walkers site on both the Alliance and NHF websites!!

    The Hemophilia Alliance thanks everyone for your participation and efforts to benefit your local Chapter.


  • Update on FAIR Time for Women
  • by Ashley Gregory, Program Director, FAIR Time for Women

    FAIR Time for Women, a national coalition has done so much! We need YOUR support though in order to complete our goals which are:

    • Support HTCs in equitable treatment for women, girls and those assigned female at birth with bleeding disorders
    • Obtain HTC sign on for MASAC #264 & Bleeders’ Bill of Rights
    • Increase storytelling for women and girls with bleeding disorders
    • Provide one central location for information seekers

    Here are some updates in a nutshell:

    1. Four sponsors have joined with a fifth in process right now!
    2. Two Bleeding Disorders Organizations have jumped on board to promote and share FTFW’s mission at their advocacy events!
    3. Website launch scheduled for 4/17, World Hemophilia Day
    4. Algorithm created for HTC use in diagnosing and treating women!
    5. Social Media Influencers identified and ready to launch
    6. Logo, business cards & promo items created
    7. Rare Disease Week, Washington Days, Coalition for Hemophilia B, Hemophilia Federation of America presence

    Please take a look at the prospectus attached and let’s meet to plan how we will together end the inequity in bleeding disorders today!


  • Webinar Announcement from the Foundation for Women and Girls with Bleeding Disorders

  • Live Webinar:
    Contraception, Thrombosis & Sickle Cell Disease:
    Considerations for Optimizing Comprehensive Care

    When: Monday, June 12th, 2023
    Time: 1:00 PM ET (12:00 PM CT, 11:00 AM MT, 10:00 AM PT)
    Faculty: Dr. Lydia Pecker
    Moderator: Dr. Andrea Roe

    This webinar will address the following learning objectives:

    • Describe hormonal contraception considerations for people with sickle cell disease
    • Discuss how to balance thrombotic risks associated with treatment on the one hand and high-risk pregnancy on the other
    • Explain how progesterone-only contraception is the preferred hormonal contraception for people with sickle cell disease

    • Register Today

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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:

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 813-748-7226
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Jennifer Anders jennifer@hemoalliance.org 954-218-8509
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Zack Duffy zack@hemoalliance.org 503-804-2581
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Kollet Koulianos, MBA kollet@p3hbc.com 309-397-8431
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670

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