Notes From The Community
In Tribute to Dr. Lynn Malec
We are saddened by the passing of Dr. Lynn Malec, a respected hematologist, valued contributor to the bleeding disorders community, and an avid supporter of the Hemophilia Alliance.
Dr. Malec was an extraordinary physician, researcher, and advocate whose impact reached far beyond her professional accomplishments. She dedicated her life to improving care, advancing access to care, and centering the voices of patients and families. Those who had the privilege of working alongside Lynn knew her as a brilliant clinician, a generous mentor, and a compassionate leader who brought both rigor and humanity to everything she did. Her influence will live on through the countless lives she touched, the colleagues she inspired, and the community she helped strengthen.
Our hearts are with Dr. Malec’s family, friends, colleagues, and the many communities she served. We honor her legacy by reaffirming our commitment to the work she championed—advancing access to care, improving care, and ensuring that patients and families remain at the center of everything we do.
Spring 340B Grantees Conference
by Jeff Blake, Heidi Lane, and Jennifer Borrillo
Hemophilia Alliance senior leadership is excited to share that for the first time we will be coordinating efforts with the Ryan White Clinics for 340B Access (RWC-340B) on planning sessions at their Spring 2026 Grantees Conference for the first time.
RWC-340B and their conference partners are inviting all Federal Grantees, including organizations such as Ryan White Clinics, Federally Qualified Health Centers (FQHCs), and specialty clinics including Tribal, Black Lung, and HTCs, to attend the conference. The conference curriculum holds value for every grantee and staff member, regardless of role or background.
The Spring 2026 Grantees Conference will take place in Houston, Texas, from May 28-May 30, 2026, at the Hyatt Regency Houston Downtown. Preconference education will begin on May 28th, with the nationally acclaimed 340B University, sponsored by Apexus, the Prime 340B Vendor. Two full days of plenary and breakout sessions will follow, covering issues of concern to grantees, such as fiscal management, audit and compliance, advocacy, pharmacy management, use of TPAs, and more. The conference will also include vendors from across the country in the associated Exhibit Hall, providing consultation and products for interested attendees. The full educational program, registration, and hotel information is available here. To access rwc340b.org, you may need to turn off your VPN.
NBDF Issues Statement on Gene Therapy
by Artemis Policy Group
The National Bleeding Disorders Foundation published a statement reiterating its commitment to shared decision-making and evidence-based access in gene therapy. NBDF recognizes that the current coverage landscape can create challenges for individuals interested in gene therapy, as well as for their treating clinicians and HTCs. The statement urges payers to allow appropriate consideration of gene therapy when it is prescribed consistent with its labeled indication and with providers’ clinical judgment.
Central Virginia Center for Coagulation Disorders Offers New Clinic
by Kelly Waters, Director of MCR
VCU’s Central Virginia Center for Coagulation Disorders (CVCCD) has expanded access to adult bleeding disorder care across the region by offering a dedicated clinic at VCU Health at William & Mary. This expansion brings lifespan care to the Tidewater region for the first time, helping bridge the gap between pediatric and adult services while significantly reducing the several hours of travel previously required to access care in Richmond.
The new quarterly satellite clinic provides comprehensive, multidisciplinary care, including infusions for the prevention of bleeding episodes, along with support from social workers, genetic counselors, and physical therapists. This team-based approach ensures that patients’ medical needs are addressed while also supporting the emotional, social, and financial challenges they may face.
Click here to watch media coverage about the clinic’s opening and click here to read more about VCU’s expanded adult bleeding disorder care.
Tool for Pharmacies
by Angela Kellum, PharmD., Louisiana Center for Bleeding & Clotting Disorders
One step in our pharmacy workflow when dispensing clotting factor is determining which vial sizes to combine to meet a patient’s prescribed dose.
Background
Clotting factor products are unique in that the actual unit amount in each vial does not match the unit amount associated with the NDC. For example, a 4,000 unit vial may contain hundreds of units more or less than 4,000. Additionally, many patients require more than one vial per dose due to available vial sizes and individualized dosing parameters.
Importance
Pharmacies calculate vial combinations that meet the prescribed dose while staying within allowable deviation ranges. This matters not only clinically, but also financially. Factor costs are per unit, and cost containment is critical. Also, many pharmacies must comply with strict payor contract requirements, often within very tight ± percentage limits.
We also are mindful of patient convenience and possible adherence challenges and therefore want to minimize the number of vials that patients must store, reconstitute, draw up and infuse. This is especially important for pediatric patients and for those with fragile veins who may struggle with larger infusion volumes.
Challenge
Traditionally we relied on pen, paper, and a calculator. With so many possible vial combinations, this process was slow and often left us wondering whether we truly had found the best option.
Solution
One day while I was working remotely, I asked my son, Samuel—who happens to be very good at math—to help me figure out the optimal vial combination for a patient’s order. He found the answer quickly. Then, later he developed a program that could do the calculation for me! That program can now be found at: https://vialcalculator.com/.
We now use this program almost every day in our in-house 340B pharmacy. I also rely on it when placing large monthly replenishment orders for our contract pharmacy. It has been shared with HTC pharmacy colleagues and hospitals across the state and across the country, and the reaction is always the same—relief that manual calculations are no longer necessary!
How it works
The program is housed on its own website: https://vialcalculator.com/
Using the program takes just 3 simple steps:
- Enter vial inventory
Free-type or copy and paste available vial inventory directly into the program—there is no need to remove alpha characters or clean up cells. If inventory is limited for specific vial sizes, “Switch to Text Mode” allows entry of exact vial counts. - Enter dosing parameters
Input the prescribed dose and allowable percent deviation (such as ±10% or +0/−5%). An optional field allows you to set a maximum number of vials per dose or dispensation. The calculator can accommodate up to 100 vials, which is especially helpful for large replenishment orders. - Calculate combinations
With one click, the program instantly generates optimal vial combinations.- Results can be sorted by Fewest Vials or Optimal Combinations
- The selected combination can be copied directly into an ordering email, printed for inventory pulling, or saved for documentation
Final thoughts
This tool has become an integral part of our pharmacy workflow, and it has improved efficiency, confidence, and consistency in factor dispensing. I encourage you to share it with your pharmacy teams and contract pharmacies. I’m confident they’ll find it just as helpful.
For feedback or suggestions, feel free to email Angela Kellum at: akellum1@tulane.edu.
Have a story you want to share or a topic you would like us to cover?
Also In This Issue…
Jeff Weighs In
Advocacy and Legal Update
- Appropriations Measure is Signed Into Law
- 340B Reform Efforts Remain Quiet
- eAPTC Extension Appears Dead
- Update on Medicare Reimbursement Issues for Some Bleeding Disorders Treatments
Member and Community Relations Update
- The MCR Team Is Here to Support Your HTC with Letters of Agreement, Single Case Agreements, and Gene Therapy Reimbursement
- Linda Gammage Social Worker Planning Committee Member Needed
- 5th Annual Pharmacist CE Meeting – The Best Yet!
Administration and Operations Update
- Annual Savings Letters and Member Dues – Be on the Lookout!
- MPBA 2026 Meeting Recap: Strengthening the Future of HTCs Through Leadership, Strategy, and Collaboration