HIV/AIDS Crisis

A 1993 newsletter lambasts NHF for deciding "for its constituents instead of deciding with them" in regards to the ongoing HIV crisis.

NHF partners with the AIDS Memorial Grove and the Hemophilia Federation of America to open a Hemophilia Memorial Circle in Golden Gate Park.

Donald Goldman, Esq., an attorney, who was active in the National Hemophilia Foundation and its chapters for over 25 years joins the National Commission on AIDS among other advocates and medical experts. He coordinated the National Hemophilia Foundation's efforts to improve the safety of the nation's blood supply, began many of its efforts in HIV risk reduction, and introduced initiatives to improve delivery of hemophilia and HIV services to minorities.

On December 2, 1986, NHF executive director Alan Brownstein penned a letter to Surgeon General C. Everett Koop in response to the first Surgeon General's Report on AIDS. Brownstein noted that the report would help "dispel ignorance and prevent discrimination" while also educating and informing.

On February 5, 1986, President Reagan finally authorized Surgeon General C. Everett Koop to produce a Surgeon General’s Report on Acquired Immune Deficiency Syndrome. This occurred during a speech given to employees of the Department of Health and Human in which Reagan stated: “I’m asking the Surgeon General to prepare a major report to the American people on AIDS.”

The first World AIDS Day is noted as a global health day on December 1, 1988.

On January 17, 1983, NHF issued a statement calling on manufacturers of blood products to refuse blood donations by Gay men.

The Ricky Ray Hemophilia Fund Act of 1998 becomes law, providing compassionate payments to individuals with blood-clotting disorders, such as hemophilia, who contracted human immunodeficiency virus due to contaminated blood products.

NHF establishes HANDI (Hemophilia and AIDS/HIV Network for the Dissemination of Information).

Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

With the guidance of NHF advocates, Rep. Porter J. Goss of Florida introduces the H.R.1023 - Ricky Ray Hemophilia Relief Fund Act of 1998.

Pharmceutical companies settle with hemophiliacs who contracted HIV/AIDs through blood products.

A coalition of hemophiliacs who contracted HIV/AIDS due to improper guidance from pharmaceutical companies and NHF around blood safety file a class action lawsuit.

Ryan White, a hemophilia and AIDs advocate, passes away from complications due to HIV.

Ryan White, a hemophilia patient, is diagnosed with AIDs after a blood transfusion at age 13.

NHF's MASAC recommends use of heat-treated plasma concentrates in order to minimize the risk of transmission of HIV-I (human immunodefficiency virus).

August 25–26, 1983: Hyland Therapeutics and ARC announce recall of lots (two each) from identified donors who were confirmed to have died of AIDS. NHF reaffirms its recommendation that patients maintain use of concentrate or cryoprecipitate as prescribed by their physicians.

On July 19, 1983, the FDA's Blood Products Advisory Committee (BPAC) was devoted to the question of what was known about AIDS and its transmission through the blood supply, and what BPAC should recommend to the FDA concerning recalls (FDA, BPAC 1983; see also Chapter 3).

The National Hemophilia Foundation seems to have been the only participant at the BPAC meeting that supported the automatic recall of any product that was found to have been manufactured with plasma taken from a person subsequently determined to have AIDS or to have had characteristics strongly suggestive of AIDS. Indeed, the BPAC recall agenda seems to have been set by an NHF Medical and Scientific Advisory Council (MASAC) position favoring automatic recall (FDA, BPAC 1983). However, that position had been formulated by the NHF prior to the BPAC meeting. At the meeting itself, NHF medical director, Louis Aledort, first stated the NHF position, then followed by stating his personal view that the NHF position had been formulated prior to the consideration of the Pharmaceutical Manufacturers Association assertions concerning the possible impact of automatic recalls on the availability of AHF concentrate (FDA, BPAC 1983).

A retrovirus, the Human Immunodeficiency Virus (HIV), is identified in 1983 as the pathogen responsible for Acquired Immunodeficiency Syndrome (AIDS).

NHF agrees to work with CDC, FDA, and NIH to establish surveillance system of hemophiliacs with symptoms of opportunistic infections

On July 16, 1982, NHF was alerted by the Centers for Disease Control that three people with hemophilia had come down with the newly defined immune-deficiency syndrome. When the NHF began to investigate, however, the organization's leaders decided that the risk for hemophiliacs from not using the blood concentrate was far greater than the risk posed by this new disease, which seemed to be affecting very few people.

The CDC reports the first AIDS cases in people with hemophilia through the use of tainted blood products used to treat bleeding disorders.

The CDC reports the first cases of AIDS in the USA.

Ryan White, who will become the face of the HIV crisis for the hemophilia community, is born.