August 2022 Newsletter

In this Issue…

Notes from Heidi and Joe
· Serving Members Where They Are

Alliance Update
· Recognizing the 2021 Wall of Walkers Winners
· Join Us in Salt Lake City!

Legal Update
· Proving the Absence of a Requirement: Use of Funds Derived from the 340B Program for Indigent Care

Payer Update
· The Payer Relations Communication Highway

Notes from the Community
· Recent Articles of Interest

Team Alliance Contact Information

Notes from Heidi and Joe

Serving Members Where They Are
by Joe Pugliese and Heidi Lane

Dear Bleeding Disorders Community,

The Alliance serves all our members wherever they may be. We also remain committed to helping them serve all of their patients. Last week, we received a note from a member announcing they would not be attending our Fall Member Meeting in Salt Lake City in support of Utah being included in California’s ban on state-funded and state-sponsored travel to states with discriminatory laws (Assembly Bill NO. 1887). We recognize other members may hold similar positions and as such we felt it important and timely to share excerpts from our response below. As always, we appreciate hearing from our members.

First of all, thank you for your email. We very much appreciate hearing from our members, both what we do well and what we can do better. We were unaware Utah was recently added to California’s AB 1887. We thank you for bringing this to our attention. While we understand your reasons for choosing not to attend a meeting in Utah, we hope to provide you with information to reconsider and attend in-person. The location of our member meetings are chosen to expose our members to different areas of our country. First and foremost, our mission is “… to ensure member Hemophilia Treatment Centers have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders”. Though not explicitly stated, this also includes “wherever they may be”. Salt Lake City was chosen both because we have never held a meeting in Utah and also to provide Heidi, our outgoing Chair, the opportunity to showcase Salt Lake City, home to the Utah Center for Bleeding and Clotting Disorders. Heidi was personally involved in establishing their factor program in Utah and will be sharing their story.

We also recognize there are several polarizing issues facing our country and acknowledge those issues impact our members and the patients/families they serve. Our member HTCs provide care to patients, regardless of their political or social environment, and in some cases despite it. We believe that the HTC presence and mission in those states that have chosen to adopt regressive policies should be celebrated as an example of what is best in healthcare. We understand your choice, but ask that you reconsider and attend in-person to join us in supporting local businesses who are supportive of inclusion and the rights of the LGBTQ community. The practice of supporting local businesses is not new to the Alliance. We intentionally seek out local businesses in support of the communities we visit. Salt Lake City happens to have a concentration of locally owned businesses supportive of and owned by members of the LGBTQ community. Additionally, we generally hold our meetings at Marriott hotels who strongly support inclusion and the rights of the LGBTQ community:

We thank you for expressing your concerns and hope you reconsider and attend the Fall Member Meeting in-person. Your insight and expertise gained through years of experience in working with the bleeding disorders community is invaluable and best appreciated through in-person attendance and participation. You will be missed if you choose not to attend, however, all sessions will be available after the meeting through the member portal. We will not be providing a live virtual option.


Heidi and Joe

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Alliance Update

Recognizing 2021 HTC Wall of Walkers Winners!
by Karen Bowe

2022 Unite Walk ChallengeThe Hemophilia Alliance hosted a recognition dinner for the 2021 NHF Unite Walk HTC Wall of Walkers winners at the NHF Bleeding Disorders Conference in Houston, TX on Thursday August 25, 2022. In attendance were representatives from 4 of the 5 winning HTCs: Cincinnati Children’s, Cincinnati, Ohio; Orthopaedic Institute for Children, Los Angeles, CA; University of Colorado, Denver, CO; and Fargo North Dakota Hemophilia and Thrombosis Treatment Center, Fargo, ND; along with representatives from the National Hemophilia Foundation. The Alliance wishes to thank these HTCs and all HTCs that participated in the 2021 Unite Walk.

We are again supporting NHF in the 2022 Unite Walk with the 2nd annual HTC Wall of Walkers campaign and are encouraging member HTCs to join with your local Chapters to form a team to support your local community. This year the walks will be 100% in person and so far are trending ahead of last year in both participants and team captains. As a reminder, as a member HTC of the Hemophilia Alliance, all HTC teams that raise $1,000+ for their local Walk program will be recognized by NHF & the Hemophilia Alliance as being a part of our Wall of Walkers. These teams will receive the following:

  • Recognition during Unite Rally Chapter and Community virtual training
  • Recognition from the Hemophilia Alliance in newsletter publications and webinars
  1. Top HTC Fundraising Teams: Unite Walk Chapters have been broken up into five respective market groups. The top HTC fundraising team in each group will receive a $1000 scholarship to send a staff person to attend the 2023 Bleeding Disorders Conference to be held in Washington, DC August 17-19, 2023. HTC sponsorships do not count toward Team Fundraising.
  2. Family team recruitment: We want to help you not only succeed but be the top HTC fundraiser in your market group. HTCs are given the opportunity to receive a quantity of promotional magnets to be given to families during their visits. Click on the link below for instructions from NHF on how to order magnets for your Center:

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Join Us in Salt Lake City!

As noted above, the Fall Alliance Members Meeting will be in Salt Lake City, October 2-4, 2022. We are so excited to be back in person with everyone this Fall, and hope you’ll plan to join us for great information sessions, as well as the in-person networking and reconnecting that we have all been missing. To register to attend, click here. To book your hotel room, click here.


Fall Members Meeting
October 2nd, 2022 – October 4th, 2022

Salt Lake City, Utah

Sunday, October 2nd

  • 6:00 pm – Welcome Reception

Monday, October 3rd

  • Hemophilia Alliance Board Update
  • Alliance Update
  • Gene Therapy – Recap of summer meeting
  • Payer Update
  • HANS (Hemophilia Alliance Networking Services) Update
  • Medicaid Update
  • Panel Discussion of Physicians on Gene therapy
  • Washington Update
  • Gene Therapy Payer contracting discussion
  • HTC Best Practices
  • Panel Discussion – Gene Therapy Infusion centers
  • Networking Dinner

Tuesday, October 4th

  • National Patient Organizations presentations
  • New Therapies Update
  • Staffing & Operations within an HTC
  • Legal Update – (salary caps, capital improvements, carryover funds, patient services – dental, ortho referrals)
  • Manufacturing Partner presentations

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Legal Update

Proving the Absence of a Requirement: Use of Funds Derived from the 340B Program for Indigent Care
by Elizabeth “Issie” Karan

Recently, the Hemophilia Alliance team was asked to prove that funds generated from a HTC’s 340B Program are not required to be used exclusively to support charity care. Although this is not the first time we have been asked this question, demonstrating the lack of a requirement can be difficult. Below we summarize why the perception that 340B Program revenue must only be used for indigent care is false.

People with bleeding and clotting disorders are medically vulnerable, since lack of access to expert care and appropriate treatment can lead to life-threatening complications. To alleviate this burden, Congress created the national network of federally-supported HTCs, which receive grant funding under Section 501(a)(2) of the Social Security Act and from the CDC. With this funding, HTCs then can register with the Office of Pharmacy Affairs within Health Resources and Services Administration (HRSA) as a covered entity under the 340B Program.

Congress enacted Section 340B of the Public Health Service Act in 1992. While doing so, Congress stated in the congressional record that the 340B Program’s purpose is to allow covered entities to “stretch scarce Federal resources as far as possible, reaching more eligible patients and providing more comprehensive services.” (See H.R. REP. NO. 102-384, pt. 2, at 12 (1992), available at

Most HTCs participate in the 340B drug discount program. As supported by the legislative history of the 340B Program, HTC participation in 340B Program enables them to provide treatments at significant discounts to patients served by the center and to reinvest program income to support comprehensive care for all of the center’s patients. These funds are needed to support HTCs since they only receive $35,000 per year in federal funds, on average.

As a recipient or subrecipient of Federal grant, an HTC is subject to the requirements of 45 CFR Part 75. Revenue earned by the HTC that is directly generated by a grant supported activity, or “earned as a result” of the award is “program income,” including revenue from the 340B program. (45 CFR § 75.2) Under 45 CFR § 75.307, HTC program income must be added to federal funds and “must be used for the purposes and under the conditions of the Federal award.”

The Maternal Child Health Bureau (MCHB), which administers the HTC grant and also is housed within HRSA, determines the purpose and conditions of the HTC program through its grantmaking process. Therefore, program income can support any activity MCHB decides is within the scope of the grant. Such efforts may include those described in the Notice of Grant Funding, including, but not limited to, patient health, education, and supportive services necessary to provide comprehensive care to patients served by HTCs. While HTCs may use program income to provide care to indigent populations, many other allowable uses of program income exist, and HTCs have discretion to determine how best to meet the needs of its patients and their families and caregivers.

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Payer Update

The Payer Relations Communication Highway
by Mark Plencner

The Payer Team has been working steadfastly over the last four years to return over 40,000,000 units back to the HTCs by contacting and developing relationships with Insurers, Brokers/Consultants, PBMs and TPAs. Through Letters of Agreement and the broader-reaching HANS PPO Agreement, we have shown that the Hemophilia Alliance through our member HTCs can provide substantial savings to their clients while continuing to provide integrated care – a model that is published and proven superior when patients are seen at an HTC.

The newly formed relationships within the Payers along with our longstanding relationships with the HTCs have resulted in a Communication Superhighway. Our savings model has been very successful. Payers, who previously responded only when contacted through our phone calls and emails, are now contacting the Hemophilia Alliance, or even the HTCs directly, seeking cost savings opportunities.

In a recent example, a pharmacy benefit consultant contacted one of our member HTCs seeking better pricing on clotting factor for a large, self-insured client. The HTC’s pharmacist suggested they contact the Hemophilia Alliance. The consultant emailed us immediately seeking to find out more about the Alliance. After an introductory meeting, the consultant provided us with claims data. We were able to determine the patient was already receiving their medication from the HTC pharmacy program and was being reimbursed at the contracted rate from the payer under the medical benefits. Still, the employer and the consultant wanted to move the patient to another pharmacy and have the claims processed as a pharmacy benefit. Through discussion with the HTC, we were able to provide a suggested saving model to the consultant and employer which would keep the patient at the HTC Pharmacy as well as provide additional savings to the client. The consultant was extremely impressed by the short turnaround time needed to establish a reimbursement rate and complete the individual Letter of Agreement.

The pharmacy benefit consultant then initiated a call with the Hemophilia Alliance to see if we could provide savings for all their members nationally through a Hemophilia Alliance Network Services (HANS) payer contract. We continue our discussions with the consultant and we recently received data on their members that includes more than 20 people with bleeding disorders and over 2,000,000 units of clotting factor and Hemlibra. We are in the process of completing our analysis and are excited about this opportunity.

This is an excellent example of how working together can create excellent opportunities to grow your pharmacy business and increase HTC pharmacy market share nationally. The key to success in working on your behalf is a timely response to potential opportunities and continued communication with our payer team members. This enables us to secure opportunities on your behalf while brokers and employers are exploring renewal opportunities for their overall health plan expense.

Please don’t hesitate to contact a member of the Hemophilia Alliance Team to assist with your Payer issues. We work for YOU!!

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Notes from the Community

Recent Articles of Interest

We wanted to share a few recent articles to make sure that Alliance members have seen them:

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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 215-439-7173
Sean Singh 813-748-7226
Jeff Blake 317-657-5913
Jeff Amond 608-206-3132
Jennifer Anders 954-218-8509
Angela Blue, MBA 651-308-3902
Zack Duffy 503-804-2581
Michael B. Glomb 202-466-8960
Johanna Gray, MPA 703-304-8111
Karen Bowe-Hause 717-571-0266
Kiet Huynh 917-362-1382
Elizabeth Karan 612-202-3240
Kollet Koulianos, MBA 309-397-8431
Roland P. Lamy, Jr. 603-491-0853
Dr. George L. Oestreich, Pharm.D., MPA 573-230-7075
Theresa Parker 727-688-2568
Mark Plencner 701-318-2910
Ellen Riker 202-257-6670

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