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 鈥淪urviving Voices鈥 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 […]

ABC鈥檚 Secrets and Lies Dishonors Hemophilia Patients

March 17, 2015

ABC鈥檚 Secrets and Lies Dishonors Thousands of Americans Living with Hemophilia Calls manageable hereditary condition 鈥渘asty byproduct of incest.鈥 WASHINGTON, DC 鈥斅燭he Hemophilia Federation of America (HFA)聽was appalled to learn that the American Broadcasting Company (ABC) show聽Secrets and Lies聽referred to hemophilia as a 鈥渘asty byproduct of incest鈥 in the episode 鈥淭he Sister鈥 (S01, E04) that […]

2008: Costs Remain Problematic

March 25, 2014

Title:聽Higher Lifetime Insurance Caps Needed for Chronic Conditions By:聽Glenn Mones聽 Source:聽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 […]

Benefits of Prophylaxis Recognized

March 25, 2014

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

2006: A Legacy of Tainted Blood

March 24, 2014

Title:聽A Legacy of Tainted Blood By:聽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 […]

2000s: Living with a Bleeding Disorder

March 24, 2014

  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 鈥渉emophilia鈥 begins to be replaced by the term聽鈥渂leeding disorders鈥 to acknowledge all […]

1998: Ricky Ray Relief Fund Act Passed

March 23, 2014

聽*Photos courtesy of Corey Dubin Ricky Ray Hemophilia Relief Fund Act of 1998 PUBLIC LAW 105鈥369鈥擭OV. 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鈥擜 Time for Action

March 21, 2014

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

1995: A Turning Point for Hemophilia

March 21, 2014

*Articles courtesy of Barry Haarde聽 In 1995,聽a Committee of the Institute of Medicine (IOM),聽releases a report called, HIV and the Blood Supply: An Analysis of Crisis Decision Making, this report is a turning point for the hemophilia community. Click HERE to read the IOM report ________________________________________ Title: Blood Safety Changes Ordered Subtitle: They Include A […]

1990s鈥擯ainful Questions and Heartbreaking Answers

March 19, 2014

_____ Title:聽Hemophilia Foundation Chief Knew Of Aids Risk In 1984 By:聽Donna Shaw Date:聽November 3, 1994 Source:聽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,聽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 […]

Early 1990’s: Living with Hemophilia

March 19, 2014

The early 1990鈥檚 marked a period of action in the hemophilia community. In 1990, Ryan White died at the age of 18 and in 1992, Ricky Ray, one of three brothers infected with HIV/AIDS died at the age of 15. During this time, the hemophilia patient community began to independently ask their own questions and […]

1992- American Hemophilia/HIV Peer Association

March 19, 2014

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

1983鈥擟DC Determines that AIDS is Spread Through Infected Blood

March 17, 2014

[glossary_exclude]Title:聽Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations Date:聽March 4, 1983 Source:聽Centers for Disease Control聽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 聽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:聽Media Credited in Return to School of Teen with AIDS By:聽Associated Press Date: October 12, 1986 Source:聽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.聽 Ryan鈥檚 mother and his former principal said Saturday. 鈥淚 truly believe […]

1984: AIDS Continues to Spread Through the Hemophilia Community

March 17, 2014

Title:聽Update: Acquired Immunodeficiency Syndrome (AIDS) in Persons with Hemophilia Date:聽October 26, 1984 Source:聽Centers for Disease Control聽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:聽School bars door to youth with AIDS By:聽Christopher M. MacNeil聽 Date: August 31, 1985 Source:聽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 鈥渞unning around a problem they thought they wouldn鈥檛 have to deal with鈥 Jeanne E. […]

1983- Cutter Recalls Several Infected Lots of Factor

March 17, 2014

October 31, 1983 URGENT DRUG RECALL RE: 聽聽聽聽聽聽聽聽 Konyne庐 Factor IX Complex (Human) Lot Product Code NC 9117 620-20 Ko膩te庐 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鈥擟DC 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鈥擜IDS Discovered Among Patients with Hemophilia

March 17, 2014

Title:聽Epidemiologic Notes and Reports Pneumocystis carinii Pneumonia among Persons with Hemophilia A Date:聽July 16, 1982 Source:聽Centers for Disease Control聽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鈥擧eat 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:聽Blood Banks To Test for Hepatitis聽 By:聽David M. Cleary聽 Date:聽November 15, 1974 Source:聽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 […]

1970s: Living with Hemophilia

March 16, 2014

Title:聽Doctor Claims 95% Accuracy in New Test for Hemophilia By:聽Unknown聽 Date:聽1973 Source:聽Associate Press聽 A researcher says a new method has been developed that offers a 95% chance of spotting female carriers of hemophilia (bleeding disorders) as compared with only 25% accuracy with present ways. Hemophilia is a hereditary blood malady that strikes only men but […]

Mid-Late 1960’s: Hemophilia Treatment

March 14, 2014

Title:聽Hemophiliac Lifespans Grow By:聽Ellen Hale Date:聽Unknown Source: Gannett News Service New medical advances are letting people with hemophilia live longer and better than ever before, researchers say. But the success with the 鈥渂leeder鈥檚 disease鈥 has brought on new problems few of them foresaw. Suddenly, they are finding they must treat not only the disease, but […]

1950’s-1960’s: Early Hemophilia Treatment Articles

March 13, 2014

Title: Bee Stings May Save Boy鈥檚 Life* By:聽Unknown聽 Source:聽St. Petersburg Times Date: May 19, 1957 A 16 year-old Clearwater boy is taking a deep interest in bees these days. They may be saving his life. It worries him that the ones who come to his aid must die in return. The youth is Jackie McAllister, […]

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