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Hemophilia History

Help Choose the Inscription on the Hemophilia Memorial

August 1, 2017

The Hemophilia Memorial in the National AIDS Memorial Grove in San Francisco, CA, will be a place where we can remember the people in our community who lost their lives to AIDS. This will be a place of remembrance, healing, and hope. The founding partners of the Hemophilia Memorial, HFA, the National Hemophilia Foundation, and […]

FAQ: Hemophilia Memorial at the National Memorial AIDS Grove

July 12, 2017

  How did the Hemophilia Memorial at the National AIDS Memorial Grove come to be? In 2016, National AIDS Memorial Grove reached out asking for support for their “Surviving Voices” project. This is a multi-year oral history project meant to ensure that stories and lessons of the AIDS epidemic are captured, curated, and retained for […]

Intern Introspective: Fly In Recap

June 16, 2017

Earlier this summer, we introduced you to La’Brittinee and Paul, our summer Policy interns. They have been busy all over DC, attending Congressional hearings and learning the ropes of working for a national organization. During their first week, they got to experience first-hand the planning and execution of our 4th Annual Patient Fly-In. Below are […]

Remembering Ryan White 26 Years Later

April 7, 2016

Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children. Learn more about Ryan’s legacy by clicking […]

Infusing Love: A Painful Legacy

October 1, 2015

I attended my first, big, national hemophilia conference in 1997.  My son, Julian, was two years old and I was scared to death. The enormity of it was almost too much!  The exhibit hall with giveaway after giveaway (I had no idea that my son was seen as a dollar sign to some ), huge […]

ABC’s Secrets and Lies Dishonors Hemophilia Patients

March 17, 2015

ABC’s Secrets and Lies Dishonors Thousands of Americans Living with Hemophilia Calls manageable hereditary condition “nasty byproduct of incest.” WASHINGTON, DC — The Hemophilia Federation of America (HFA) was appalled to learn that the American Broadcasting Company (ABC) show Secrets and Lies referred to hemophilia as a “nasty byproduct of incest” in the episode “The Sister” (S01, E04) that […]

Infusing Love: A Community’s Legacy

December 3, 2014

[glossary_exclude] This past Monday marked the 26th annual World AIDS Day.  James W. Bunn and Thomas Netter, two public information officers for the Global Programme on AIDS at the World Health Organization, conceived World AIDS Day in 1987. Since then, messages and proclamations that raise awareness and call for action for an AIDS-free generation are […]

FDA: Hemophilia Treatments Have Come a Long Way

April 18, 2014

Gone are the days when a hemophilia diagnosis meant you could not live a normal life. Now more hemophilia treatments are approved by the Food and Drug Administration (FDA), and people with the condition can better manage bleeding. That’s good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]

2008: Costs Remain Problematic

March 25, 2014

Title: Higher Lifetime Insurance Caps Needed for Chronic Conditions By: Glenn Mones  Source: PPTA Karen and George Bishop live in Findlay, Ohio, with their 16-year-old son, Michael, who has hemophilia B (factor IX deficiency). Michael is allergic to factor IX and needs high doses of an expensive bypassing agent to control his bleeding. Even with treatment, Michael has […]

2007: Benefits of Prophylaxis Recognized

March 25, 2014

Title: Prophylaxis versus Episodic Treatment to Prevent Joint Disease in Boys with Severe Hemophilia By: Marilyn J. Manco-Johnson, M.D., et. al. Source: New England Journal of Medicine  Before the development of cryoprecipitate, a plasma fraction that contains concentrated factor VIII, boys with severe hemophilia A had a diminished life expectancy. These children are at risk for many types […]

2006: A Legacy of Tainted Blood

March 24, 2014

Title: A Legacy of Tainted Blood By: Steve Sternberg Date: July 11, 2006 Source: USA Today Like many young men, Joshua Lunior is searching for his dream girl. He knows she won’t be easy to find, because Lunior, 24, comes with some challenging baggage. He belongs to an all-but-forgotten generation of 10,000 people with hemophilia who contracted […]

1998: Ricky Ray Relief Fund Act Passed

March 23, 2014

 *Photos courtesy of Corey Dubin Ricky Ray Hemophilia Relief Fund Act of 1998 PUBLIC LAW 105–369—NOV. 12, 1998 [H.R. 1023] To provide for compassionate payments with regard to individuals with blood- clotting disorders, such as hemophilia, who contracted human immunodeficiency virus due to contaminated antihemophilic factor, and for other purposes. Be it enacted by the […]

Mid-Late 1990s: A Period of Action for Hemophilia Community

March 22, 2014

_____________________________________ Title: At Annual Meeting, Hoping To Heal Hemophiliacs’ Rift Subtitle: Some Want Retribution For Aids; Others Want To Move On. By: Donna Shaw, INQUIRER STAFF WRITER Date: October 12, 1995 Source: The Philadelphia Inquirer There is much that keeps Michael Carlin alive in the memories of his family. There is his poetry. His music. […]

1990s—A Time for Action

March 21, 2014

Dateline Federation Fall 1997       Volume 3.1 Hemophilia Federation Launches First Annual Symposium The weekend of September 5 – 7, 1997 was filled with entertainment, education, and an epicurean world tour for members of our community who gathered for the Federation’s first annual educational symposium at the Hyatt Regency Hotel in downtown Houston, […]

1990s—Painful Questions and Heartbreaking Answers

March 19, 2014

_____ Title: Hemophilia Foundation Chief Knew Of Aids Risk In 1984 By: Donna Shaw Date: November 3, 1994 Source: The Philadelphia Inquirer Blood-clotting drugs so improved his life that their possible contamination with the AIDS virus in the early 1980s was “an irrelevancy,” according to Donald S. Goldman, a former president and board chairman of the National Hemophilia Foundation. […]

1994- First Issue of Dateline Federation Published

March 19, 2014

Note: This is a transcribed copy of the first issue of our quarterly newsletter, Dateline Federation. A scanned .pdf of the issue is located here. New Kid on the Block The Hemophilia Federation Takes its Place in the Community Many, many times over the past eighteen months, we have been asked the proverbial question – just […]

1992- American Hemophilia/HIV Peer Association

March 19, 2014

ACTION NOW! American H/HIV Peer Association Volume 1, Number 1                                                                                           […]

1983—CDC Determines that AIDS is Spread Through Infected Blood

March 17, 2014

[glossary_exclude]Title: Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations Date: March 4, 1983 Source: Centers for Disease Control Morbidity and Mortality Weekly Report Since June 1981, over 1,200 cases of acquired immune deficiency syndrome (AIDS) have been reported to CDC from 34 states, the District of Columbia, and 15 countries. Reported cases of AIDS include persons […]

1989- COTT and the HIV/Peer Association Formed

March 17, 2014

In the late 1980s, many in the hemophilia community felt they were not getting the answers they sought. The Committee of Ten Thousand (COTT) and the Hemophilia-HIV/Peer Association were formed to demand more information and transparency while holding accountable those who allowed the HIV/AIDS epidemic to spread so widely through the community. Below is a […]

1985- Product Recalls Continue, Remain Cumbersome

March 17, 2014

December 13, 1985 AIDS UPDATE Medical Bulletin #34 Chapter Advisory #39 Factor IX Product Withdrawal Announced  On Friday, November 29, 1985, Hyland Therapeutics Division of Travenol Laboratories, Inc., initiated a voluntary market withdrawal of one lot of Factor IX Complex, PROPLEX (not heat treated) in the United States. The Withdrawal was based on identification of […]

1986- Thanks In Part to Media Attention, Ryan White Returns to School

March 17, 2014

Title: Media Credited in Return to School of Teen with AIDS By: Associated Press Date: October 12, 1986 Source: Indianapolis Star News coverage of the battle by young AIDS victim Ryan White to return to school educated the public about the disease but sometimes sensationalized the story.  Ryan’s mother and his former principal said Saturday. “I truly believe […]

1984: AIDS Continues to Spread Through the Hemophilia Community

March 17, 2014

Title: Update: Acquired Immunodeficiency Syndrome (AIDS) in Persons with Hemophilia Date: October 26, 1984 Source: Centers for Disease Control Morbidity and Mortality Weekly Report Reports of hemophilia-associated acquired immunodeficiency syndrome (AIDS) in the United States were first published in July 1982 (1). Since then, the number of U.S. patients with underlying coagulation disorders who develop AIDS has increased each […]

1985- Ryan White Banned From School Because of AIDS

March 17, 2014

Title: School bars door to youth with AIDS By: Christopher M. MacNeil  Date: August 31, 1985 Source: Kokomo Tribune The mother of a local 13-year-old AIDS patient who has been barred from attending classes at Western Middle School today accused the school administration of “running around a problem they thought they wouldn’t have to deal with” Jeanne E. […]

1983- Cutter Recalls Several Infected Lots of Factor

March 17, 2014

October 31, 1983 URGENT DRUG RECALL RE:          Konyne® Factor IX Complex (Human) Lot Product Code NC 9117 620-20 Koāte® Antihemophillic Factor (Human) Lot Product Code Lot Product Code Lot Product Code NC 8458 650-30 NC 8460 650-30 NC8461 650-30 NC 8462 650-70 NC 8470 650-30 NC 8474 650-30 NC 8475 650-20 NC 8476 650-20 […]

1983- NHF Encourages the Use of Factor Despite Risks

March 17, 2014

Note: The following is a medical bulletin received by the Delaware Chapter of the National Hemophilia Foundation in 1983 regarding the use of factor in the face of the AIDS epidemic. In transcribing the article, we’ve attempted to retain the source document’s formatting. To see the source document as it was sent, please look below […]

1983—CDC Holds Summit on AIDS

March 17, 2014

In January 1983, the Centers for Disease Control gathered doctors, scientists, and representatives from the pharmacological industry and the bleeding disorders community in an attempt to find the means for halting the spread of AIDS. They were unable to arrive at a conclusion. During this meeting, Dr. Donald Francis of the CDC stood up, pounded […]

1982—AIDS Discovered Among Patients with Hemophilia

March 17, 2014

Title: Epidemiologic Notes and Reports Pneumocystis carinii Pneumonia among Persons with Hemophilia A Date: July 16, 1982 Source: Centers for Disease Control Morbidity and Mortality Weekly Report CDC recently received reports of three cases of Pneumocystis carinii pneumonia among patients with hemophilia A and without other underlying disease. Two have died; one remains critically ill. All three were heterosexual […]

1983—Heat Treatment Found to Kill AIDS in Hemophilia Drugs

March 17, 2014

March 21, 1983 Our Reference: 82-196 Michael B. Rodell, Ph.D. Travenol Laboratories, Inc. Hyland Therapeutics Division 444 West Glenoaks Boulevard Glendale, CA. 91202 Dear Mr. Rodell: The amendment to your product license for Antihemophilic Factor (Human) to allow for an optional heat treatment of final containers has been approved. This information will be made a […]

1974: Blood Banks Begin to Screen Out Infected Blood

March 16, 2014

Title: Blood Banks To Test for Hepatitis  By: David M. Cleary  Date: November 15, 1974 Source: The Philadelphia Bulletin The chance that a recipient of a bleed transfusion will be infected with hepatitis has been sharply reduced over the past 10 years, thanks to improved methods of detecting hepatitis virus in blood supplied by donors. In the American Red […]


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