Over 50 Years of Advancing Treatment For All 

The World Federation of Hemophilia (WFH) was established in 1963 by Frank Schnabel, a Montreal businessman born with severe hemophilia A. His vision, as he stated, was to improve treatment and care for “the hundreds of thousands of hemophiliacs” worldwide through a new international organization.

Working with leaders from a group of national patient associations, Schnabel convened a global meeting in Copenhagen, Denmark, on June 25, 1963. There were representatives from 12 countries: Argentina, Australia, Belgium, Canada, Denmark, France, Germany, Japan, the Netherlands, Sweden, the United Kingdom, and the United States.

Schnabel’s opening words to those assembled still ring true: “The threat to the life of just one hemophiliac would be sufficient reason for us to travel to this meeting. We are here, however, to help the hundreds of thousands of hemophiliacs by adding another organization which can be instrumental, in liaison with national societies.”

At the Copenhagen meeting, Schnabel was elected interim chairman, Henri Chaigneau (France) and John Walsh (U.S.A.) were elected interim vice-chairmen. Interim medical secretaries were Cecil Harris, MD (Canada), E. Neumark, MD (U.K.), and Knut-Eric Sjolin, MD (Denmark). Sir Weldon Dalrymple-Champneys (U.K.), Professor Kenneth Brinkhous (U.S.A.), and Professor J.P. Soulier (France) were elected as the interim Medical and Scientific Advisory Board.

Over the next few years, the WFH grew rapidly. It held World Congresses regularly and created a global network of healthcare providers, national hemophilia associations, people with hemophilia (PWH), and their families.

The WFH reached a turning point in 1969 when the World Health Organization (WHO) acknowledged the WFH’s growing international reputation and established official relations.

In 1970, the WFH launched the International Hemophilia Treatment Centre (IHTC) Program, conceived by medical secretary Anthony Britten, MD, a doctor with severe hemophilia. The 18 centres named, “Would be assuming a responsibility, not receiving an honour,” Britten later wrote. “These centres will bring... inspiration to many, and leadership to all of us.”

Through the 1970s, the IHTC Program offered numerous fellowships and workshops to medical professionals from the developing world. Policies on the selection and focus of training were developed and fine-tuned. One realization was that training was most effective when carried out in an environment similar to that of the trainees.

Frank Schnabel and his wife, Marthe Schnabel, WFH Executive Director, along with other volunteers, spent much time growing the number of WFH national member organizations, which was done through visits, correspondence, and at international meetings. The Guide for Travelling Hemophiliacs (later to become Passport: Global Treatment Centre Directory) was first published in 1973. It was not a “Michelin Guide,” Schnabel pointed out, but a directory of hemophilia treatment centres where travellers could find proper care.

For people with hemophilia in developed countries, the 1970s also saw a huge expansion in treatment and the face of hemophilia treatment changed dramatically.

With the availability and benefits of concentrates—in terms of longer life expectancy and less disability—the WFH organized an international conference in Bonn, Germany, to develop a blueprint for hemophilia care in the 1980s.

“In the 1980s, the WFH will continue to pursue two concurrent and complementary objectives to accelerate the utilization of research potential and to expand contemporary comprehensive care of hemophiliacs,” wrote Frank Schnabel in a special issue of Haemophilia Bulletin.

In 1982, the acquired immune deficiency syndrome (AIDS) crisis hit the hemophilia community, and the hopefulness that marked the beginning of the decade quickly turned to darkness and despair. AIDS was transmitted to people with hemophilia through clotting factor concentrates and this led to a devastating epidemic among the hemophilia population in North America, Europe, and other developed countries.

Patients and healthcare providers were initially reluctant to turn away from factor concentrate and return to the pain and disability of the pre-concentrate days. Meanwhile, the scope of the epidemic was underestimated.

In 1983, at the WFH Congress in Stockholm, Sweden, Bruce Evatt, MD, presented data connecting human immunodeficiency virus (HIV) infection in hemophilia patients and plasma-derived treatment concentrates. Under the direction of Shelby Dietrich, MD, the WFH established the World Hemophilia AIDS Centre with the Los Angeles Orthopedic Hospital to provide rapid access to vital information about the disease.

Sadly, AIDS contracted from HIV-contaminated treatment products swept through the hemophilia community. Worldwide, tens of thousands of people with hemophilia contracted HIV and hepatitis from their treatment products.

Among the victims was Frank Schnabel, who died in 1987. Until the end, he reaffirmed his vision with the words, “We are going to emerge victorious.”

Business professional and WFH executive committee member Charles Carman was elected WFH President in 1988. In the midst of the turbulence in the community, he set out to adapt the WFH to the changing environment. During his tenure, he introduced important management structures and broadened the funding base of the WFH. He also embarked on a major exercise to develop a strategic plan to carry the WFH into the next millennium.

Fifty-four experts in the medical treatment and research of hemophilia— along with the national leaders of hemophilia associations—met in Paris, France, in April 1990, to start working on the Decade Plan. Coordinated by Peter Levine, MD, Peter Jones, MD, and the WFH Executive Director Declan Murphy, the group identified the critical issues and concerns affecting the global comprehensive care of people with hemophilia. The plan was launched in 1992. Unfortunately, Charles Carman did not see the fruition of his work. He stepped down in 1993 and died in 1995.

Reverend Alan Tanner (U.K.) served as acting president until the next WFH General Assembly in 1994, at which Brian O’Mahony was elected President and Carol Kasper, MD, was elected Vice-president medical. Line Robillard had just been hired as Executive Director. With new leadership, it was a period of transition and positive change for the WFH. O’Mahony brought the Executive Committee and the Council of the WFH together into one body—composed equally of doctors and people with hemophilia. The modified constitution was adopted in 1996.

Greater access to improved products, self-treatment, and prophylaxis highlighted the stark differences between the developed and developing countries. Under O’Mahony, the WFH focused its efforts more on the developing world, with programs that would help countries help themselves.

One major step in this endeavour was the introduction of the WFH Twinning Programs in 1994 and 1995, which paired up hemophilia organizations and treatment centres in developed countries with those in developing countries. A healthcare development project in Chile, called Operation Access, represented the WFH’s first major success in achieving a rapid and significant improvement in hemophilia care. The WFH brought together what came to be called the “winning coalition.” Companies donated treatment products, the Ministry of Health established a national hemophilia program, a key treater coordinated the program’s implementation, others received specialized training, and the patient organization held an educational and advocacy role. Throughout this process, the WFH served as a catalyst and advisor. The lives of Chileans with hemophilia changed dramatically in five years and the “winning coalition” model was adapted successfully for other countries.

Professional staff were hired and programs, publications, and congress departments were created. WFH activities expanded to include safety and supply endeavours, data and demographics gathering and analysis, laboratory training, humanitarian aid support, and capacity building for national member organizations (NMOs).

In the mid-1990s, a successful model for implementing sustainable care in developing countries had been developed by Brian O’Mahony, Line Robillard, Carol Kasper, MD, Bruce Evatt, MD, and WFH programs director Claudia Black. It was based on five key areas: government support, care delivery, medical expertise, treatment products, and patient organization involvement. Usually, country programs focused on one or two areas. Seeing a need to advance care further and faster, O’Mahony had an idea for a new intensive program that would work simultaneously on all five areas.

On World Hemophilia Day (April 17) in 2003, the WFH launched the Global Alliance for Progress (GAP) Program—a culmination of all that the WFH had learned about building sustainable care. This 10-year healthcare development initiative aimed to greatly increase the diagnosis and treatment of people with hemophilia in approximately 20 developing countries. Its goal was to diagnose 50,000 people with hemophilia globally.

O’Mahony ended his final term as president in 2004, and Mark Skinner, a Washington, D.C., U.S.A., attorney, was elected as WFH President. Under Skinner’s leadership, the WFH adopted a new strategic vision of Treatment for All, to ensure proper diagnosis, treatment, and management for all people with bleeding disorders, no matter where they live. Treatment for All also meant expanding services for other inherited bleeding disorders, including von Willebrand disease, rare factor deficiencies, inherited platelet disorders, and women with bleeding disorders. The WFH vision included ensuring a multidisciplinary approach to care.

Under Vice-presidents medical, Paul Giangrande, MD (2000 to 2008) and Alison Street, MD (2008 to 2012), multidisciplinary healthcare team members were fully incorporated into the WFH Medical Advisory Board and development model, to ensure that a comprehensive, integrated approach to achieving sustainable care was fully integrated into the WFH.

During the WFH 2012 World Congress in Paris, France, Mark Skinner ended his term and Alain Weill (France) was elected as the new WFH President.

In 2013, expansion and growth continued with the Close the Gap Campaign (which aimed to raise $5 million by 2014), a new research program, phase two of the GAP Program, and the launch of the Cornerstone Initiative, a new healthcare project to help build a solid foundation for the future of care development in the world’s most underserved areas.

These programs—which have been so successful for the WFH over the past decade remain—part of our foundation. The GAP, Twinning, and IHTC programs have been very effective, and are examples of healthcare development programming that others in similar organizations aspire to include in their development work.

In 2015, a fundamental change was brought about by the expansion of the WFH Humanitarian Aid Program. A new department was created, as the WFH became more focused and prepared to accept new major treatment donations. This new program’s success is due to the strong WFH development and educational programs that are designed to advocate to local governments and encourage them to invest more in supporting hemophilia treatments.

The WFH decided to bolster its worldwide support in 2016 by creating a Regional Development team, with most of the positions based in the different regions that we serve around the globe. This change allows us to better understand local priorities and needs, putting the WFH in a strong position to find solutions to the urgent challenges faced by many of our communities.

As the importance and utility of data to support WFH advocacy and research initiatives became more apparent, the WFH launched the World Bleeding Disorders Registry (WBDR) in 2018, to complement the data already collected through the Annual Global Survey. The WBDR is a web-based data entry system that provides a platform for a network of hemophilia treatment centres (HTCs) to collect uniform and standardized data on people with hemophilia. The real-world data generated by the WBDR will be used to support research and advocacy initiatives and improve the care of PWH for many years to come.