MASAC Guiding Hemophilia Care for 70 Years

MASAC: Guiding Hemophilia Care for 70 Years

Since its inception in 1954, NHF’s Medical and Scientific Advisory Council has had a major role in communicating to medical personnel and the public.
Author: Donna Behen

The National Hemophilia Foundation (NHF) celebrates its 75th anniversary in 2023. Throughout the year, will be commemorating this special milestone with articles that look back at notable programs, initiatives, and events in NHF’s history.


For nearly 70 years, NHF’s Medical and Scientific Advisory Council, or MASAC, has played a pivotal role in the bleeding disorders community, issuing recommendations and advisories on research, treatment, and other health concerns.

Originally called the Medical Advisory Council, MASAC was created in 1954 by NHF founder Robert Lee Henry, who wanted to bring together a small group of physician experts who could come up with recommendations on how to treat people with hemophilia. 

From its original seven physicians, MASAC has grown and evolved into a much larger and more diverse group of men and women that includes at present representatives from the foundation’s Nursing, Social Work and Physical Therapy Working Groups, as well as consumer representatives and liaisons from government agencies such as the National Heart, Lung, and Blood Institute and the Food and Drug Administration.

MASAC chairs are appointed and they choose the other members of the council. A term lasts three years, and members can be reappointed for a second term. 

A Unique Experience 

“Being a member of MASAC is probably one of the most unique experiences that anybody in this field can have,” says former MASAC Chair Craig M. Kessler, M.D., professor of medicine and pathology and section chief of hematology at Georgetown University.

“First of all, it’s a group of individuals who are responsible for setting the standards of care for the bleeding community. It is necessary to be aware of scientific advances, results of clinical trials, and the medical needs of individuals with bleeding disorders. It is necessary to appreciate reimbursement mechanisms, but most important, MASAC must respect the concept of patient/healthcare provider shared decision-making in the context of MASAC resolutions,” he says. “MASAC must be able to have the foresight to know what the implications are for its decisions. It is a big puzzle and a serious challenge, but being on MASAC is an extremely energizing, stimulating, and serious responsibility and privilege.” 

Over the years, MASAC has issued more than 400 recommendations and advisories, many of which have had a significant impact on bleeding disorders care. In 1984, in the midst of the HIV/AIDS crisis, the council recommended the use of heat-treated plasma concentrates to minimize the risk of HIV transmission. Recommendations for prophylactic treatment for people with hemophilia A or B followed in 1994. And in 2008, MASAC issued a recommendation to assist pharmacies in providing clotting factor concentrates for home use.

In addition, each year MASAC establishes standard treatment guidelines that are referred to by international experts, medical schools, pharmacists, emergency room personnel, insurance companies, and many others.

Current MASAC Chair Amy Dunn, M.D., director of pediatric hematology at the hemophilia treatment center at Nationwide Children’s Hospital in Columbus, Ohio, says she’s particularly proud that MASAC includes consumer representatives. “When I first learned about MASAC, I remember being impressed that it isn’t just physicians telling patients and families what they should do,” she says. “It’s a much more holistic approach where consumers and other community members are actively involved in the decision-making. I think it’s a great example of how the medical community can work together with advocacy organizations and patients and families to drive the field in the right direction.” 

Dunn believes MASAC’s recommendations are especially valuable to hemophilia treatment centers (HTCs). “The more we can have a centralized clearinghouse for important guidance and recommendations, the less that each HTC around the country has to do to try to create their own, which is not only time-consuming, but HTCs may not have the same ability to gather a diverse group of experts around a table or on Zoom to be able to look at issues from a lot of different perspectives,” she says. 

Other MASAC Members Weigh In

Here’s what other current MASAC members have to say about their involvement with the group and why they think MASAC is so invaluable: 

Jennifer Davila, M.D., The Children’s Hospital at Montefiore, Bronx, New York

“I’ve only been a member for a few months, but to me personally, it is a great honor — dare I say recognition — to be invited to join a group of leaders who are helping to guide the care of patients with bleeding disorders on a national level. The guidance comes from people who have dedicated their life’s work to this community, and there is science and heart behind every document published.”

Lora Joyner, M.S., P.T., PCS, East Carolina University, Greenville, North Carolina

“Being a member of MASAC is important to me because I am able to represent our Physical Therapy Working Group on this committee. I can provide appropriate physical therapy input to relevant issues for persons with bleeding disorders and ensure that musculoskeletal concerns will be addressed in standards of care and emerging therapies/treatments.”  

Peter A. Kouides, M.D., Mary M. Gooley Hemophilia Center, Rochester, New York

“It’s an honor to be appointed, but more importantly, a great responsibility to represent your patients and colleagues in developing very timely guidance regarding new approvals, how best to use present therapeutic treatments, the importance of appropriate diagnostic testing, and speaking up for the disenfranchised patients in our community who are losing insurance and/or facing gender and/or racial inequalities. The treatment recommendations given can be very helpful to practitioners and patients in bringing clarity at a time when social media is rife with many inaccuracies and misleading statements regarding patients with bleeding disorders.”

Jonathan C. Roberts, M.D., University of Illinois College of Medicine at Peoria

“As an individual with a bleeding disorder myself and a physician-scientist, I feel a great responsibility to care and advocate for fellow individuals affected by bleeding disorders, to ensure access to cutting-edge therapies for all, and to shape policies that will improve many lives. MASAC has given a platform for national improvement in the management of bleeding disorders, shaped by the expertise of many thought-leading colleagues across the country.”

Courtney D. Thornburg, M.D., M.S., Rady Children’s Hospital, San Diego

“I am thrilled to have the opportunity to contribute to critical recommendations and advisories, particularly as there are new treatment options. MASAC brings together a multidisciplinary group of individuals with unique expertise who are committed to improving the lives of people affected by inheritable blood disorders, and it provides guidance to health care professionals and other stakeholders to ensure that members of the bleeding disorders community have access to safe and effective care.”

Robert Sidonio Jr., M.D., Emory University, Atlanta 

“MASAC is such an important organization as it brings together all the critical thinkers, thought leaders, clinical and basic science research leaders, PTs, social workers, master clinicians, NPs, and patients to focus on addressing the critical issues in bleeding disorders. I like to refer to it as the C-SPAN of bleeding disorders. MASAC helps to ensure access to our patients and comments on evolving issues like immune tolerance induction, nomenclature changes, etc. Payers, patient organizations, and our colleagues look to this as the standard of care, so it is critically important to get it right."