• 2nd century AD

    The first description of an inherited bleeding disorder is referenced in the Talmud, an ancient body of Jewish law, compiled in the 2nd century AD.

  • 1639

    The first European with a bleeding disorder is believed to have arrived in the American colonies.

  • 1791

    Isaac Zoll dies at age 19 from a minor cut on his foot. He is regarded as the first American with hemophilia.

  • 1803

    Hemophilia is first named.

  • 1837-1901

    Queen Victoria ruled the United Kingdom from 1837 until her death in 1901. She is origin of hemophilia in the royal families.

  • 1839

    The book Domestic Medicine is published. It includes treatments for hemorrhages and internal bleeding.

  • 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.

  • 1926

    Von Willebrand Disease is first described.

  • 1943 鈥 1957

    The life expectancy for someone with severe hemophilia is only 20 years old. Advances in transfusion medicine improve life expectancy.

  • 1943 鈥 1957

    Treatment is limited to whole blood transfusions, bed rest, leg braces, and compression.

  • 1948

    The National Hemophilia Foundation is founded by Betty Jane and Bob Henry, parents of a son with hemophilia.

  • 1949

    The US Army shows that soldiers using pooled plasma have a higher incidence of jaundice.

  • 1957

    Since treatment is limited to whole blood, researchers seek alternative means to prevent and treating bleeding episodes.

  • 1959

    Mary M. Gooley, RN assembles one of the first comprehensive care centers in Rochester, NY.

  • 1960

    This era marks a time of research into effective treatment for hemophilia as whole blood continues to be the only effective treatment.

  • Early 1960’s

    Hemophilia is referred to as “the disease of kings” and the 鈥渂leeder’s disease.鈥

  • 1963

    The World Federation of Hemophilia is founded.

  • 1965

    Dr. Judith Graham Pool discovers cryoprecipitate. This is the first successful treatment for hemophilia beyond whole blood.

  • 1965

    After cryoprecipitate is developed, life expectancy grows to 24 years old.

  • 1966

    Researchers Dr. Edward Shanbrom and Dr. Murray Thelin (who had hemophilia) begin work on developing a clotting factor concentrate.

  • 1967

    Clotting factor is given to a hemophilia patient for the first time at Hyland Labs in Glendale, CA.

  • 1968

    As factor concentrate becomes available, patients are given instructions on how to access it. Availability of factor concentrate varies by center and region.

  • 1968

    Women, people of color, and those living in rural areas are rarely mentioned in the media.

  • 1969

    The National Hemophilia Foundation uses young boys to serve as the face of hemophilia and use taglines like 鈥楬elp Him Walk On His Own.鈥

  • 1969

    Dr. Shelby Dietrich leads Orthopedic Hospital in Los Angeles, California in becoming a well-respected center for hemophilia care.

  • 1969

    Camp Bold Eagle in Michigan becomes the first hemophilia summer camp in the country for children with bleeding disorders. Camp gives children the opportunity to be around others like themselves, and for many this is the first time they meet others with hemophilia.

  • 1970

    Despite medical advancements, many patients with hemophilia have joint damage from years prior. The community rallies support to help these patients receive appropriate care.

  • 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.

  • 1972

    For many years, hemophilia families are responsible for organizing blood drives to replace the donations needed for transfusions. There remain common as cryoprecipitate and clotting factor become more widely available.

  • 1972

    Celebrities join the cause to help promote blood drives.

  • 1973

    Researchers identify a new method for identifying carriers of the hemophilia gene.

  • 1973

    The Hemophilia Act passes, launching the formation of a nationwide network of federally funded hemophilia treatment centers.

  • 1974

    Hepatitis non-A, and non- B, later known as Hepatitis C is a growing concern due to pooled blood being used in treatment. However, it is deemed an 鈥渁cceptable risk鈥 since clotting factor extends patient life expectancy.

  • 1975

    Hemophilia affects many generations within one family. The media continues to draw attention to the plight of those living with the condition. Even with advances in treatment, factors such as race, ethnicity, gender, socio-economic status, and location created barriers to treatment.

  • 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.

  • 1978-1979

    Those living with hemophilia now enjoy an improved quality of life.

  • 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

  • June 1981

    The CDC reports an unknown pneumonia amongst 5 young men in Los Angeles.

  • 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).

  • December 1982

    An infant who had received a transfusion dies of an 鈥榠mmune deficiency illness. In the MMWR report outlining the infant鈥檚 death, the CDC also reports first AIDS cases among people with hemophilia and expresses concern 鈥渁bout the possible transmission of AIDS through blood and blood products.鈥

  • January 4, 1983

    The CDC hosts a meeting to address the growing concern over the safety of the nation鈥檚 blood supply. At the conclusion of the meeting no recommendations or changes are made.

  • March 1983

    The CDC issues another MMWR stating that AIDS was being transmitted through infected blood and blood products, placing the entire hemophilia community at risk of infection. The CDC recommends steps to be taken immediately to keep the blood supply safe.

  • March 1983

    HHS begins approving licensing for heat-treatment of clotting factor. Several US manufacturers begin the development of heat-treated factor concentrate after testing shows the process kills both the HIV and hepatitis viruses.

  • May 11, 1983

    The National Hemophilia Foundation sends notices to individuals and local chapters urging patients to continue the use of clotting factor, despite warnings from the CDC that the blood supply is tainted with HIV/AIDS.

  • October 1983

    Manufacturers begin issuing clotting factor recalls.

  • January 1984

    Based on a report from The Annals of Internal Medicine, transfusion-associated HIV/AIDS is proven to be sexually transmittable. Community members begin to consider how their HIV/AIDS status would impact their close relationships.

  • 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.

  • October 1984

    The CDC reports an alarmingly high number of factor concentrates contained HIV/AIDS.

  • April 1985

    Letters from the National Hemophilia Foundation continue to reaffirm the recommendation that patients use clotting factor even as product recalls are issued.

  • 1985

    In the midst of fear and confusion, Ryan White and his family from Indiana emerge as spokespersons for those living with hemophilia and HIV/AIDS, especially after Ryan is denied entry to his school.

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