The Hemotherapy Service of the National Academy of Medicine held a specialized hemophilia treatment center since 1929. The director of that center was Dr. Alfredo Pavlovsky, who had a vision and decided on October 26, 1944, to create the Hemophilia Foundation in order to provide the Academy’s treatment center with economic and social support so it could sustain its commitment to people with hemophilia.
In the 1940s hemorrhages were treated with fresh blood transfusions that were possible due to the large blood bank of the Hemotherapy Service in the National Academy. The Hemophilia Foundation’s main task was organizing campaigns to recruit blood donors, and then registering, monitoring and caring for them.
In 1956, the National Academy of Medicine created the Institute of Hematological Research, which added great impetus to the Hemophilia Treatment Center. It became the most prestigious center in the country and earned international recognition for its level of specialization and its qualified medical staff.
The inaugural meeting of the World Federation of Hemophilia (WFH) was held in Copenhagen, Denmark in June 1963. Every country would be represented by one organization, and Argentina was represented by the Hemophilia Foundation and it became one of the founding members of the WFH.
In 1966 the Hemophilia Foundation purchased a house across the National Academy of Medicine’s Treatment Center. It was known as la casita. It was a private house that could accommodate patients and their families so they could continue with their treatment at the Academy. La casita was managed by patients’ relatives.
In 1972 the VIII Hemophilia World Congress, organized by the WFH, was held in the National Academy of Medicine, in Buenos Aires. The event was attended by scientists and professionals specialized in hemophilia from over thirty countries. Argentinian hematologists that treated people with hemophilia in hospitals and centers from all over the country also participated. The Hemophilia Foundation and the National Academy helped the WFH with organization of the event.
In the mid-seventies, the most developed countries started using antihemophilic factor IX and factor VIII concentrates. The treatment was so effective that antihemophilic concentrates began to spread internationally. The widespread use of factor concentrates paved the way for home treatment, which meant a marked improvement in the quality of life of people with hemophilia.
In 1977 the regulatory agency of that time, Instituto Nacional de Obras Sociales, passed a resolution that obliged all health insurance programs to provide patients with antihemophilic concentrates. The National Government decided that it would cover half the cost of the medication.
Years later the Academy and the Foundation agreed on the possibility of offering together a wider service for people with hemophilia, including the medical disciplines that would contribute to a comprehensive and multidisciplinary treatment. The Hemophilia Foundation had received an important legacy. It was decided that an institute near the Academy would be built, a place that could hold offices for the different medical specialties. It would become a centralized institute to provide comprehensive, multidisciplinary and specialized treatment to people with hemophilia.
The idea became real with the construction of the Treatment Center of the Hemophilia Foundation at Soler 3485, in the City of Buenos Aires. It was named Dr. Alfredo Pavlovsky and it was inaugurated in November 1986. In February 1987 the local Ministry of Health authorized the center to start attending patients.
The Foundation offered dental care, physiotherapy, orthopedics, laboratory, infectious disease, psychology and social service specialists. Furthermore it run an emergency service for when the Academy was not available and created private room wards.
Since the inauguration of its own institute, the Hemophilia Foundation was pioneer in the creation of a network in Argentina specialized in hemophilia treatment. The Foundation was able to coordinate this task at a national level thanks to the organization of regular meetings with professionals from all over the country, which at the same time had collaborated in the development of the hemophilia treatment guidelines. This sustained medical and scientific effort translated into a considerable improvement in treatment, in the access to medication and in the family emotional support.
At the end of the nineties, the foundation expanded the offered services and deepened its relationship with the other centers in the country that treated hemophilia and with patient organizations. Knowledge and information is always exchanged. On a daily basis, professionals contact the Hemophilia Foundation to consult about cases, not only in the field of hematology, but also in the areas of physiotherapy, dental and musculoskeletal health, among others.
Since 2002, the National Government, through the National Ministry of Health, partially funds the Foundation’s work. This contribution allows a wider medical and social assistance for patients and a greater coordination between all hematologists across the countries and the centers and associations that were created in the biggest cities.
The Foundation also takes care of educating the patient and their families through workshops and seminars in order to improve their treatment and avoid complications. Nowadays the Foundation runs an educational online platform for patients and professionals. It also provides psychosocial support for the families and for members of the educational institutions where patients attended. Additionally, the Foundation holds several committees that deal with important topics for the community: Women Committee, National Development Committee, Young Committee, among others.
The XXIX World Hemophilia Congress took place in Buenos Aires in July 2010. It was organized by the World Federation of Hemophilia with the help of the Hemophilia Foundation. It turned out to be an extraordinary event, with a huge number of attendees (4287 people from 106 countries) and truly top-notch scientific panels. In 2023, the City of Buenos Aires was chosen again as the location for the international meeting: the WFH Comprehensive Care Summit. Again, the Foundation has earned recognition for the valuable work carried out.
In the year 2013 the National Academy of Medicine and the Hemophilia Foundation signed an agreement. The Academy would continue assisting the Foundations in scientific tasks and both institutions would keep working together in the genetics and immunology areas. Since then the residents of the Institute of Hematological Research of the Academy rotate at the Hemophilia Service of the Foundation, designated as International Hemophilia Training Center by the World Federation of Hemophilia.
The improvement of hemophilia treatment in our country was gained after years of social, medical and institutional work in the Hemophilia Foundation. For example, the institution has regular meetings with the authorities of the National Ministry of Health and its regulatory agency to offer advice on hemophilia treatment and the bidding process. It is also important to mention that the Hemophilia Foundation has written the Treatment Guidelines for Congenital Hemophilia (based on the International Treatment Guidelines of the World Federation of Hemophilia) and that in 2021 it was edited for the third time. Professionals from the Foundation and hematologists from the national network took part in the elaboration process of the guidelines.
The Hemophilia Foundation receives full international recognition because it meets international standards in hemophilia treatment. Its centralized attention is unique. The institution is also praised for the active participation in the WFH Annual Global Survey and for the ongoing training of professionals from all over the country. The Foundation is also committed in Twinning Programs with different emerging countries of the region. The mean goal of these collaborative partnerships is to guide them and empower them in the development of patient organizations and to mentor them in the technical, academic and scientific field.
Lastly, the Foundation manages incoming international concentrate donations from the WFH and laboratories. Those donations are used, according to strict guidelines, in emergencies on patients that do not count with the necessary medication.
