Cool Timeline

1639
The first European with a bleeding disorder is believed to have arrived in the American colonies.
1900-1940鈥檚
People with bleeding disorders struggled with frequent injuries and bleeding. The average life expectancy was age 14 for people with moderate to severe hemophilia.
1943 鈥 1957
The life expectancy for someone with severe hemophilia is only 20 years old. Advances in transfusion medicine improve life expectancy.
1967
Clotting factor is given to a hemophilia patient for the first time at Hyland Labs in Glendale, CA.
1971
Factor concentrate usage continues to vary. Some doctors are still prescribing and instructing patients to use cryoprecipitate in the early 1970鈥檚. Treatment at home is becoming more prevalent and patients no longer feel tethered to the hospital.
1977
An article in The Journal of the American Medical Association notes it is possible to heat treat albumin, a blood product, to effectively kill some of the hepatitis viruses. While this process was industry standard in Germany, another major producer of antihemophilic factor concentrates, it did not become mainstream in the U.S. until the mid-1980鈥檚.
1980’s
Clotting factor was made by pooling blood of up to 10,000 donors. If one donor was infected with a viral pathogen, the entire batch was infected. In 1982, the CDC reported the first cases of HIV/AIDS among people with hemophilia, and by mid-1983, researchers were able to isolate the virus that causes AIDS. Manufacturers of plasma derived clotting factor concentrates attempted to kill these viruses with dry heat, solvent detergent treatment, and pasteurization with varying degrees of success. Manufacturers licensed and began developing heat- treated products, but these were not widely available due to high cost, perceived risk, and questions over efficacy. Many in the hemophilia community became isolated due to discrimination and fear of being identified as HIV/AIDS positive. Children, most notably Ryan White and the Ray brothers, were denied entry to school. By the late 1980s, over 50% of the hemophilia community had been infected with HIV/AIDS and/or Hepatitis C. In those with severe hemophilia, the infection rate was over 90%. The decades-old concern over hepatitis was now far overshadowed by the HIV/AIDS epidemic
July 16, 1982
The CDC releases a MMWR detailing a rare pneumonia amongst 3 hemophiliacs. In light of this new information, a meeting was held nine days later on July 27. At this meeting which included representatives from FDA, CDC, Public Health Service, NIH, American Blood Resources Association, and NHF, the decision is made to change the condition鈥檚 name from Gay Related Immune Deficiency (GRID) to Acquired Immune Deficiency Syndrome (AIDS).
March 1984
The first diagnostic test for the retrovirus that causes HIV is developed. The number of people with hemophilia diagnosed with HIV/AIDS is growing rapidly.
1986
Like Ryan White, three hemophiliac brothers are denied entry to their Florida school. The Ray brothers take their case to court and are awarded the right to return to school. Shortly after the decision, their home mysteriously burns to the ground. The media coverage following the fire is often considered a significant event in the history of HIV/AIDS in the United States.
1990’s
The 1990s were a period of action in the hemophilia community. National grassroots associations like the Hemophilia-HIV Peer Association, Committee of Ten Thousand (COTT), and Hemophilia Federation of America (HFA) formed to address the unheard needs of the community. During this time, information about HIV/AIDS was not readily available; information could be found in the gay community and was emerging in the hemophilia community, but questions still lingered. Litigation against the drug manufacturers dominated most of the 1990鈥檚. Some patients filed individual cases, while others were part of large class settlements. Other chose not to pursue a settlement. After the 1995 release of the Institute of Medicine鈥檚 report, 鈥淗IV and the Blood Supply,鈥 a grassroots legislative effort developed, culminating in the passage of the Ricky Ray Hemophilia Relief Fund Act of 1998.
1992
The hemophilia patient community begins to independently ask their own questions and galvanize. Local and national hemophilia organizations and others seek answers to why they were given misinformation and to hold accountable those who failed to prevent the spread of HIV/AIDS to people with hemophilia.
1992
The first recombinant factor VIII concentrate becomes commercially available. It is 1997 before a recombinant IX concentrate becomes commercially available.
1994
Hemophilia Federation of America forms as a sub-group of COTT in 1993 and becomes independent in 1994.
HFA bridges the gap between the advocacy efforts COTT is working on, and is a place of education, advocacy, and awareness for families living with bleeding disorders. HFA continues today to serve as a voice of the community.
1995
The divide in the community rests between those who were co-infected and newly diagnosed families. Many of the HIV/AIDS infected seek compensation due to the mounting medical debt and demand accountability from the government and manufacturers. Newly diagnosed families worry that the lawsuits could potentially keep them from accessing newer, safer clotting factor.
1995
Following a request from the Department of Health and Human Services, a Committee of the Institutes of Medicine (IOM) reviews the scientific evidence that was available to decision makers during the early 1980鈥檚 when the HIV/AIDS epidemic first emerged. The IOM releases a report called, HIV and the Blood Supply: An Analysis of Crisis Decision Making, which outlines several recommendations in making the blood supply safer and gives a list of action items including the need for consumer representation on governmental blood advisory groups.
The report is a turning point for the community.
2000’s
The hemophilia community between the HIV/AIDS-era families, and post- heat treated, and recombinant factor using families slowly began to heal. The financial burden of living with hemophilia was felt in lifetime caps and out-of-pocket expenses. In 2007, the Joint Outcome Study was released showing that prophylactic treatment is favorable to on-demand treatment in reducing joint and life-threatening bleeding. Much attention is devoted to the development and treatment of inhibitors in hemophilia.
2000-2005
The hemophilia community sees a resurgence in families coming together through camps, local, and national meetings. The term, 鈥渉emophilia鈥 begins to be replaced by the term 鈥渂leeding disorders鈥 to acknowledge all bleeding conditions. Treatment costs continue to rank among the most expensive chronic conditions. The financial impact continues to burden families.
2006
Although about 30% of Hemophilia A and 2-3% of Hemophilia B patients will form an inhibitor and have been of concern since clotting factor was discovered in the 1960鈥檚, resources and education about this complication had been scarce. Education and outreach increase for inhibitor families in the mid- 2000鈥檚.