Dear Addy: History Exhibit

Dear Addy, I attended HFA’s Symposium in San Diego and really enjoyed the history exhibit. Is there a way for me to access the timeline? I’d like to read more about the history of the bleeding disorders community. Signed, Advocate for the Ages Dear Advocate, Yes! You can access the timeline on our site. The […]

Help Choose the Inscription on the Hemophilia Memorial

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 the […]

FAQ: Hemophilia Memorial at the National Memorial AIDS Grove

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 future […]

1995: A Turning Point for Hemophilia

In 1995, a committee of the Institute of Medicine (IOM), released a report called, HIV and the Blood Supply: An Analysis of Crisis Decision Making. This report is a turning point for the hemophilia community. Blood Safety Changes Ordered They Include a Blood-safety Director and Less Influence By The Industry The Philadelphia InquirerBy: Donna Shaw, Staff writerDate: October […]

ABC’s Secrets and Lies Dishonors Hemophilia Patients

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 […]

2008: Costs Remain Problematic

Title: Higher Lifetime Insurance Caps Needed for Chronic ConditionsBy: 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 suffered many […]

Benefits of Prophylaxis Recognized

Prophylaxis versus Episodic Treatment to Prevent Joint Disease in Boys with Severe Hemophilia By Marilyn J. Manco-Johnson, M.D.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 of hemorrhages, but the predominant […]

2006: A Legacy of Tainted Blood

Title: A Legacy of Tainted BloodBy: Steve SternbergDate: July 11, 2006Source: 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 the AIDS virus, […]

2000s: Living with a Bleeding Disorder

 In the early 2000’s, the divide in the hemophilia community between the HIV/AIDS-era families, post-heat treated, and recombinant factor using families slowly begins to heal. The community sees a resurgence in families coming together through camps, local, and national meetings. The term “hemophilia” begins to be replaced by the term “bleeding disorders” to acknowledge all bleeding conditions.Treatment […]

1998: Ricky Ray Relief Fund Act Passed

 *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 Senate […]