HFA News

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, […]

World AIDS Day Webinar Slides & Handout

December 11, 2013

Since 1988, December 1st has been observed as World AIDS Day. The World Health Organization designated this day to ensure renewed and ongoing attention to the threat posed by HIV/AIDS. It is estimated by Centers for Disease and Control (CDC) that over 1 million people in the United States are currently living with HIV. Hemophilia […]

25th Anniversary of World AIDS Day

November 18, 2013

On December 1st, hundreds of thousands of people in our nation and around the world observe World AIDS Day to raise awareness about HIV and AIDS. World Aids Day was established in 1988 by the World Health Organization (WHO) to ensure renewed and continual attention to the threat posed by HIV and AIDS. The Center […]

Help Us Celebrate World Kindness Day!

November 13, 2013

Today is World Kindness Day! Anyone living a chronic condition like a bleeding disorder, knows the power of kindness when family and friends drop everything to be with you during an emergency room visit, help you laugh when there is pain, offer support when times get tough, and provide encouragement when you need it the […]

Bullying in Today’s World – Dads In Action Webinar & Slides

October 12, 2013

This is a recorded presentation by Diane Horbacz from a November 2012 Dads in Action webinar. 聽(Currently undergoing an update) 聽

A Family’s Struggle with vWD

September 20, 2013

I am a single mom of three; all with special needs.聽My son has severe speech problems, my youngest daughter has mild von Willebrands, and my聽oldest daughter has severe von Willebrands, food allergies, and experiences seizures. My daughter’s frequent and heavy nose bleeds led聽doctors to perform four surgeries on her nose. My daughter was not responding […]

A Bleed and No Money

September 12, 2013

I am a single mom with two sons with mild Hemophilia B. We receive public assistance through a state program and the eligibility requirements include 20 hours of community service each week. Normally, my sons鈥 hemophilia is controlled but one day my 10 yr. old son received a cut on his finger. I bandaged it […]

A Long Hospital Stay

August 29, 2013

We are all in this together 鈥淭hank you to all that make the Helping Hands program possible. Thank you for helping our family.鈥 My youngest son has severe hemophilia A. He bleeds internally very frequently and lives in a lot of pain. He misses 5-7 days of school each month because of his constant bleeds, […]

Recorded Webinar: Hemophilia & School Success

August 23, 2013

Joby Robinson, PhD, spoke at an August 2013 Dads in Action webinar. 聽This recording is the webinar in its entirety and includes information about everything you ever needed to know about the federal laws that protect children with bleeding disorders in the school setting: The Individuals with Disabilities Education Act (IDEA), Individualized Health Care Plans, […]

Setting the Stage for School Success – August 2011 Webinar Slides

August 19, 2013

These are the slides from an August 2011 webinar presented by Janet Brewer. In the slides, you will find information on the federal & state laws that provide educational services to children with disabilities, the qualification criteria and the process to develop an appropriate plan, your rights and responsibilities and specific accommodations that may be […]

College Check List

August 14, 2013

A student going away to college is an exciting time, but can also be scary and unsettling if he/she has a bleeding disorder. Whether living in a college dorm room or on an off campus apartment, a student will need some basic items to stay healthy. We have provided a short list of essentials to […]

Facebook Users Raise Money For HFA

May 1, 2013

Enfield, CT 鈥 Members of the bleeding disorders community have jumped at the opportunity to help raise much-needed funds for the Hemophilia Federation of America (HFA). Thanks to American Homecare Federation, Inc.鈥檚 new campaign, Facebook users can raise $5 for the Hemophilia Federation of America with a click of the mouse. During the months of […]

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