May 2023 Newsletter

In this Issue…

Notes from Joe

Notes from the Community
· Announcing: The 4th Annual Innovation Grant
· HTC DSCSA Update
· Not Your Ordinary Mascot!
· VWD Connect Foundation July Conference – Patient Registration Still Available!

Alliance Board Update
· New Board Members

Washington Update
· COVID-19 Public Health Emergency Ends – Impact on Medicare & Medicaid

Alliance Update
· Alliance Member Needs Assessment – Your Participation is Needed
· Upcoming Alliance Meetings

Payer Update
· Audits – We are here to help!

Team Alliance Contact Information

Notes from Joe

by Joe Pugliese, President and CEO

The World Health Organization recently declared an end to the Covid pandemic, I think the same week there was a superspreader event at a 340B Grantee meeting in New Orleans. What is clear is everyone is done with the pandemic, although it is not necessarily done with us.

Since last month’s issue, I have been to San Francisco, Manhattan Beach and New York City. Heading into the summer there are three more meetings on the schedule. All are in DC, our Hill Day June 12th and 13th, 340B Coalition Meeting July 10th -12th, NHF Bleeding Disorders Conference celebrating its 75th Anniversary.

We celebrated the 25th Anniversary of the Linda Gammage Social Worker Conference in San Francisco. The program has been funded by CSL Behring since its inception. A big shout out to CSL’s Paul Perrault, the outgoing CEO, and Paul McKenzie, the new CEO, who both sent messages of ongoing support for this wildly successful program. If you have never seen or have not watched the film, Bad Blood, you should. I recently watched it and took a deep breath, reminding myself of what has informed the bleeding disorders community over the last 40 years. The Social Worker Conference included a visit to the National Aids Memorial. I strongly recommend you go if you have not had the opportunity. We dedicated a rock to Linda Gammage, the visionary behind the social worker meeting. It was a great group.

I traveled to Manhattan Beach next to the Region IX meeting, hosted by CHLA. They set a record for in-person attendance. Heidi Lane was grateful for the opportunity to attend the meeting as an invited speaker. She shares the following, “The agenda, being quite robust, focused on cradle to grave topics on women, girls, and people with potential to menstruate who are living with bleeding and clotting disorders. The meeting format provided attendees the opportunity to network, expand knowledge and participate in thoughtful discussions around issues facing the patients and families we serve.”

The following week we had our third new staff member meeting in New York City. We are very appreciative of our two corporate sponsors CSL Behring and Takeda. There were 70 attendees from 40 treatment centers. We had an excellent mix of healthcare professionals, including docs, APNs, nurses, physical therapists, pharmacists and social workers, as well administrative staff including those that work in billing and collections.

The presentations were largely handled by Hemophilia Alliance staff. The staff has 310 years of experience in the bleeding disorders community. Two board members Becky Burns and Heidi Lane presented on, being an independent HTC and the HRSA Grant regional structure, respectively. While Kate Colbath from Partners presented on how her organization support the USHTCN and the larger bleeding disorders community. These three presenters had a total of 45 of years in the bleeding disorders community.

The 70 attendees at the Alliance Meeting had a total of 86 years’ experience and average of 1.2 years. This is the third meeting of its kind in the last 15 months. We all recognize the high degree of turnover at our centers, these meetings are critical to helping staff across disciplines and the country get up to speed quickly on the complex business of operating an HTC, the gold standard of care for the bleeding disorders community.

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Notes from the Community
  • Announcing: The 4th Annual Innovation Grant

  • The Hemophilia Alliance Foundation is excited to offer its 4th annual funding opportunity for the Innovation Grant. This funding will allow an organization to fund a larger-scope project than what they are able to do with current HAF smaller grants.

    This is a one-year grant with projects to be completed within the grant year which runs between September 1, 2023 and August 31st, 2024.

    The goal of the Innovation Grant is to encourage larger scale, unique, and innovative projects that will serve the community with resources that will improve the lives of patients with inherited bleeding and thrombotic disorders.

    To be eligible the applicant organization must serve persons with heritable bleeding and thrombotic disorders and operate under IRS tax exemption 501(c)(3) or 170(c)(1) or other nonprofit status. Eligible organizations would include:

    • Local applicants such as chapters, member organizations, and HTCs
    • National organizations
    • The eight HHS-designated federally-funded regional core coordinating centers.
    • The maximum amount per grant request is $50,000. Projects should demonstrate clear and measurable outcomes.

      Priority for funding will be given to new projects aimed at expansion of capacity, collaboration (between two or more organizations), and innovation.

      Organizations interested in submitting applications should review the 2023 Grant Guidance thoroughly before finalizing their applications. To see our Grant Guidance and to apply online, visit our website at:

      The deadline for application submission is July 18th, 2023. Applications must be submitted directly on the Hemophilia Alliance Foundation website.

      For questions about the Innovation Grant process, please contact the Hemophilia Alliance Foundation Grant Committee Chairman, Ralph Gruppo, MD –

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      Alliance Board Update

      New Board Members
      by Becky Burns, Vice Chair, Hemophilia Alliance Board

      The mission of the Hemophilia Alliance is to work “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”. Per the Hemophilia Alliance by-laws, “The Board of Directors should, to the extent feasible, include members representative of the eight (8) regional networks of hemophilia treatment centers, types of programs, expertise, and experience.”

      We want to sincerely thank all applicants for their interest in serving on the board. We received a robust slate of candidates who all would have brought something unique to the board. We thoughtfully reviewed and considered all applicants in the context of the Mission and by-laws, seeking to represent our membership most broadly as well as diversify our expertise and insight to most strategically address challenges to further our mission.

      We are pleased to announce Rebecca Kruse-Jarres, MD, Sachiko Suzuki, and Miguel Escobar, MD have been elected to serve on the Board, with their terms beginning June 2023. Dr. Kruse-Jarres currently serves as the Medical Director and Executive Director of the Washington Center for Bleeding Disorders as well as Medical Director of the Mountain States Region. Sachiko Suzuki is the 340B Manager and Research Manager at the UCSF Hemophilia Treatment Center. Dr. Escobar is the Medical Director of the Gulf States Hemophilia and Thrombophilia Center. All three new board members bring varied areas of expertise to our board as well as provide representation on the board from all eight regions! We are happy to welcome them to the board and look forward to working with them as we work to support the Hemophilia Alliance team in furthering our mission.

      Again, we can’t thank the individuals who applied to serve on the board enough. We may be reaching out to you to assist in serving the Alliance in other ways.

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    • HTC DSCSA Update
    • by Michael Fusaro, The Alliance Pharmacy

      Hemophilia Alliance members have no shortage of hot topics to pay attention to. Inboxes are filled with newsletters from state boards, federal agencies, advocacy groups, accrediting bodies, clinical updates, and more. We must often weigh our priorities and decide how to distribute the limited bandwidth we have to stay a step ahead. For many of us, DSCSA has been added to the mix.

      Despite the looming November 27th, 2023, deadline, industry readiness surveys still show all levels of trading partners behind schedule. While manufacturers and distributors scramble to prepare, there are many who believe that the FDA will extend their November deadline or at a minimum postpone enforcement of the changes. The FDA has been silent regarding any possible extension and will likely wait until the last moment to announce any such concession.

      There is not much an HTC can do to until the industry finds its own answers. While there are solution providers available to help manage the upcoming changes, most dispenser level trading partners will want to wait until the fog clears. For those of you wondering what you should do now, here are some easy ways to prepare.

      • Designate a contact person within your organization for DSCSA communications.
      • Obtain a GLN
      • Yes, I know this is annoying. We have so many identifiers already, how could we possibly need another!? Global Location Numbers are a necessary component of the new ‘EPCIS’ format. This is the FDA endorsed method to send transaction data after November 27th, 2023. Some vendors can use alternates like DEA or HIN for now, but that will almost certainly change with the new data once we go live. Fortunately, registering for a GLN is quick and inexpensive.
      • Respond to vendor readiness surveys.
      • Manufacturers and distributors will be collecting information from their customers to ensure readiness and communicate upcoming changes.
      • Stay tuned for updates from your state board, pharmacies, and vendors.
      • Helpful Links

      • FDA – DSCSA (
      • NABP – How Pharmacies can Prep for DSCSA (
      • Pharmaceutical Dispenser Global Location Number Quick Start Guide (
      • Home – DispenserEDU DispenserEDU (

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    • Not Your Ordinary Mascot!
    • With how crazy busy life is within the HTC taking care of patients, dealing with insurance companies, and stressing about all the possible changes with the 340B program, it is nice to have a good outlet to have some fun not only within your HTC group, but with the whole bleeding and clotting disorder community. One fun way the Kansas City Regional Hemophilia Treatment Center has done this is having our own special mascot: Chuckles!!

      Back in 2014, the Kansas City HTC was super busy with travel and patient care (as all of us were and still are!). During a team meeting a fun idea was brought up and it was decided that our team needed a mascot who would travel around the country with us to represent us in a fun-loving way to bring us all cheer……and Chuckles the Coag Chimp was born!

      Chuckles first trip was to the inaugural THSNA meeting in Chicago, IL, but since then he has traveled to several meetings, four different countries, and three different continents! Chuckles is a regular attendee to our national meetings such as ASH, THSNA, HTRS, and ISTH…..he has also traveled to a few Hemophilia Alliance meetings and loved participating in the Hemophilia Alliance Hill Day in 2019. Anywhere you see the Kansas City HTC team members, you are sure to find Chuckles right there with them.

      Initially Chuckles was born for the Kansas City HTC team to enjoy and log their travels, but now one can say Chuckles actually might be the most popular member of the Kansas City HTC team! Not only do several members of the hemostasis and thrombosis community always ask where Chuckles is when they see the KC team, but he also has quite a robust Twitter following as well with 167 followers. His first tweets were from that trip to Chicago and all of his travels and photos are posted close to real time. Make sure to follow Chuckles on Twitter with his handle @Coagchimp.

      Chuckles has been a great asset for the Kansas City HTC team. Though the patients might not be aware of him since he mainly interacts with the HTC staff, he certainly has helped the team morale to ensure they take care of the HTC patients as best as possible.

      If other HTCs think having a mascot like Chuckles would benefit their program, they are free to reach out to the Kansas City HTC about it if they have any questions. The time commitment and cost has been minimal (one person runs the twitter account/posts the pics and literally the twitter followings happened without any work on our end) and it surely is fun to see all the interaction Chuckles has with the bleeding and clotting disorder community!

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    • VWD Connect Foundation July Conference – Patient Registration Still Available!
    • VWD Connect Foundation (VCF) will be holding the 7th Annual U.S. National Type 3/Severe Von Willebrand Disease Conference in West Palm Beach, Florida on July 21-24, 2023. The conference provides a four-day patient education curriculum for Type 3 and severe VWD patients, along with a companion of their choice. The Foundation will provide a hotel room for each group and all meals for attendees, but patients and guests must provide their own travel to and from the West Palm Beach Marriott. Limited funds are available for travel assistance for patients in financial need.

      VCF is a non-profit organization established to serve the bleeding disorder community, focusing on severe Von Willebrand Disease. They provide education and foster connection for patients and families, and support research which will benefit the Von Willebrand Disease community.

      The 2023 conference’s faculty will offer educational sessions and moderate small discussion groups. Faculty members include Christopher Walsh, MD, Mt. Sinai Hospital, New York, NY, Tung Wynn, MD, UF Health Shands Children’s Hospital HTC, Gainesville, FL; Robert Montgomery, MD, Blood Research Institute and Medical College of Wisconsin, Milwaukee, WI, Robert Sidonio, MD Aflac Cancer and Blood Disorders Center, Atlanta, GA, Angela Weyand, MD, University of Michigan HTC, Veronica Flood, MD, Medical College of Wisconsin, and Prof. James O’Donnell, St. James’ Hospital, Dublin, Ireland. The faculty also includes experienced medical providers and health educators from a diverse group of disciplines such as physical therapy, genetic counseling, HTC social workers and nurses.

      A Core Education track of medical session topics will include diagnosis, symptoms, and treatments. For those who have attended the conference before and have a basic knowledge of these subjects, a Specialized Topic track will also be offered, in which patients will receive more in-depth education on specific issues. Prophylaxis, genetics, infusion techniques, nosebleeds, anemia and joint challenges will be addressed in both tracks. Psychosocial sessions will address the issues of pain, depression, anxiety, disclosure, parenting, aging, transitioning and insurance.

      For more information about VWD Connect Foundation, the conference or other Foundation activities, please contact Jeanette Cesta, Executive Director, at or 561-373-3889.

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Washington Update

COVID-19 Public Health Emergency Ends – Impact on Medicare & Medicaid
by Ellen Riker, Advocacy Consultant

The COVID-19 public health emergency (PHE) officially came to an end on May 11, 2023. The PHE has been in place since early 2020 and a number of Medicare and Medicaid policies put in place during the pandemic were initially tied to the PHE – meaning the policy would end with the end of the PHE. Recent legislation, most notably the 2023 Consolidated Appropriations Act (CAA), and regulations, uncoupled many of the telehealth policies from the PHE and established end dates beyond May 11.

This summary provides Alliance Members with an overview of the Medicare telehealth flexibilities, including what is currently allowed and current end dates as well as information on the end of the Medicaid continuous coverage provision, also known as the Medicaid unwinding. Please reach out to Ellen or Johanna with any questions.

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Alliance Update
  • Alliance Member Needs Assessment – Your Participation is Needed
  • by Sean Singh, Senior Vice President Marketing and Operations

    This last month we kicked off our Member Needs Assessment, which will close at the end of May. As an additional incentive for completion of the survey, we offered some lucky first respondents a $500 donation to the hemophilia camp of their choosing. We are delighted to announce that 36 HTCs received the donation! The HTCs are listed below:

    If you have not completed the survey (, there is still plenty of time to participate in the 15-minute survey before the end of the month, and we are announcing that all participating HTCs will be eligible for the $500 donation. Your feedback is what helps drive our mission and improve our member services. Our goal is to find ways to help HTCs grow and continue to provide product savings.

  • Upcoming Alliance Meetings
  • As our organization progresses towards achieving its goals, our upcoming meeting calendar plays a vital role in ensuring everyone is engaged and informed. We at the Alliance truly value your feedback. Please reach out to us if there is a meeting topic you think we should add, special guest speaker, breakout sessions OR even a specialized meeting altogether. Whatever it is that you think we can do better with regards to meetings, we want to KNOW! Check out the 2023 & 2024 calendar dates below and mark your calendars now, SAVE THE DATE and be on the lookout for registration information coming soon!

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Payer Update

Audits – We are here to help!
by Zack Duffy, Director Member & Community Relations

Audits can come to HTCs from a variety of angles. Whether it is a compliance related audit or a payor related audit the Hemophilia Alliance is here to support you through the process. The earlier a center can notify the Hemophilia Alliance, before any legal action is taken, the more we can support HTCs navigating the audit.

Recently we were made aware of a Medicare Targeted Probe and Educate (TPE) audit a member HTC received specifically related to the sale of Hemlibra. The TPE auditors were unfamiliar with how Hemlibra is billed and initially began denying claims related to Hemlibra. The Hemophilia Alliance was able to work in the background with contacts at this specific Medicare MAC (Medicare Administrative Contractor) to ensure that the auditors were educated on how Hemlibra is billed. Without a formal redetermination the auditors reached out and apologized for the confusion and overturned their prior denial. Being able to work through these issues on the front end is always easier before things start moving through the legal process.

The TPE probe also highlighted an important reminder that communication of audits may be sent to the rendering provider on the claim. It is critical that the audit information is forwarded to the person or team that is responsible for responding to the audit as quickly as possible since a timely response is often needed. Also, it is important to ensure that contact information is up to date within the Medicare Provider Enrollment, Chain, and Ownership System (PECOS) If PO Boxes or clinic addresses aren’t up to date it will create delays in communication with Medicare auditors. Find out who your Medicare MAC is here:

While this is an example of a specific type of Medicare audit, we are happy to support you through any type of payor or compliance audit. The earlier we are involved the better. Please reach out to your center’s primary contact at the Alliance and they can loop in all pertinent parties.

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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
Jeff Blake 317-657-5913
Jennifer Borrillo, MSW, LCSW, MBA 504-376-5282
Jeff Amond 608-206-3132
Jennifer Anders 954-218-8509
Angela Blue, MBA 651-308-3902
Karen Bowe-Hause 717-571-0266
Zack Duffy 503-804-2581
Michael B. Glomb 202-466-8960
Johanna Gray, MPA 703-304-8111
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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