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

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

People with bleeding disorders struggled with frequent injuries and bleeding. The average life expectancy was age 14 for people with moderate to severe hemophilia.

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

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

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

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

The World Federation of Hemophilia is founded.

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

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

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

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

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

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.

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

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 “acceptable risk” since clotting factor extends patient life expectancy.

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’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

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’s name from Gay Related Immune Deficiency (GRID) to Acquired Immune Deficiency Syndrome (AIDS).

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

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.

Manufacturers begin issuing clotting factor recalls.

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.

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

FDA stops issuing licenses for non- heated-treated clotting factor, however, the decision is left up to manufacturers on how to handle their inventory. It is 1991 before FDA issues a mandatory recall and destruction of non-heated- treated clotting factor.

The first product for the treatment of von Willebrand Disease becomes commercially available.

The first World Hemophilia Day is observed on April 17 to increase awareness of hemophilia and other bleeding disorders. April 17 is chosen in honor of Frank Schnabel, the founder of the WFH.

Ryan White dies at the age of 18.

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.

Ricky Ray, one of three brothers infected with HIV/AIDS, dies at age 15.

Litigation against drug manufacturers dominates most of the 1990’s. Some patients file individual cases, while others are part of large class action suits. Others choose not to pursue a settlement.

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.

A critical question in the litigation is why heat treatment was not perfected until 1983 for clotting factor. Heat treated clotting factor was shown to effectively eliminate the transmission of HIV/AIDS and some hepatitis viruses.

While other countries are finalizing settlements by 1996, negotiations in the US continue due to years of stalled litigation.

After the IOM report and many attempts at class action suits, victims and their families gain traction in holding the pharmaceutical companies accountable for infected clotting factor products.

As a result of the community’s tireless grassroots efforts, Congress begins to show support for those affected.

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.

Recombinant Factor VIII product shortages instill concern about the supply of necessary clotting factor concentrates.

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’s, resources and education about this complication had been scarce. Education and outreach increase for inhibitor families in the mid- 2000’s.