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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 […]

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 […]

1980’s: Hemophilia, HIV/AIDS, and Hepatitis C

March 17, 2014

In 1982, the Centers for Disease Control (CDC) reported the first case of HIV/AIDS among people with #hemophilia, and concerns began to grow that the blood supply was tainted. Despite warnings from the CDC, leaders in the hemophilia community encouraged patients to continue using clotting factor (more information below). In 1983, several manufacturers began the […]

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 […]

PSI: CMS Final Rule On Ryan White Premium Assistance & Other State/Federal Programs

March 15, 2014

The Centers for Medicare and Medicaid Services (CMS) has posted an interim final rule (IFR) with comment period requiring Qualified Health Plans (QHPs) to 鈥渁ccept premium and cost-sharing payments made on behalf of enrollees by the Ryan White HIV/AIDS Program, other Federal and State government programs that provide premium and cost sharing support for specific […]

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, […]

Community: You Are Never Alone

March 5, 2014

There is something special about the hemophilia community. I have never experienced anything like it. I have friends that have children that are affected by diabetes, cancer, ADHD, and the autism spectrum, but even though these families are among extremely large support communities there is nothing like the hemophilia community. 聽聽Even though we may be […]

Dear Addy: Employee Disclosure

March 3, 2014

  Dear Addy, Should I tell my work I have hemophilia? I am worried the company might hold my hemophilia against me. I do not want the people at my work to think I can鈥檛 do my job or that I will be using too many sick days. Chronically Fearful ____________________________ Dear Fearful, Your concerns […]

NY Times: Progress Against Hepatitis C, a Sneaky Virus

February 26, 2014

Forty years ago, a beloved neighbor was bedridden for weeks at a time with a mysterious ailment. She knew only that it involved her liver and that she must never drink alcohol, which would make things worse. It was decades before the cause of these debilitating flare-ups was discovered: a viral infection at first called […]

CMS Explanation in Response to PSI Letter to HHS Secretary

February 26, 2014

In response to letters by Patient Services Incorporated (PSI) and other patient advocacy groups, CMS has released a further explanation on the November 4, 2013, Frequently Asked Question (FAQ) document. As you will remember, CMS called into question the use of premium assistance, the FAQ stated: The Department of Health and Human Services (HHS) has […]

Right Here, Right Now

February 26, 2014

ad路vo路ca路cy noun \藞ad-v蓹-k蓹-s膿 : the act or process of supporting a cause or proposal : the act or process of advocating something The bleeding disorder community has been going to Washington for decades. When we started losing members from the tainted blood products some justifiably angry affected men, women and families decided it was time […]

Hazy Shade of Winter

February 19, 2014

The first day of school is supposed to be hot, sunny and bright. Thomas鈥檚 first day of school 鈥 actually his second first day of school 鈥 was on February 4, 2014 and only had a high of fifteen degrees Fahrenheit.聽 It was not your typical first day of school in many ways. It was […]

Bayer: Postive Results from Phase III Study of Long-Acting Recombinant Factor VIII

February 18, 2014

Bayer HealthCare today announced positive results from the PROTECT VIII trial evaluating the company鈥檚 investigational long-acting site-specific PEGylated recombinant human factor VIII compound BAY 94-9027. The study met its primary objective of protection from bleeds with fewer infusions. In the study, the site-specific PEGylated factor VIII helped protect against bleeds when used prophylactically every seven […]

Phase IV Study Results for Once-weekly BeneFIX

February 12, 2014

Adding to the growing body of published data on treatment paradigms in hemophilia B, the January edition of Haemophilia published data from a multicenter, randomized, cross-over Phase IV study demonstrating that secondary prophylaxis using once-weekly 100 IU/kg BeneFIX庐 Coagulation Factor IX (Recombinant) provided a similar efficacy and safety profile compared with twice-weekly prophylaxis at 50 […]

A Milestone A Year in the Making

February 12, 2014

By Sonji Wilkes A year ago this week, 鈥淚nfusing Love: A Mom鈥檚 View鈥 was born.聽 Like any newborn鈥檚 first year, time has absolutely flown by.聽 The wonderful thing about breathing life into something is the relationships and lessons you gain during the journey聽 —聽 鈥淚nfusing Love鈥 has certainly taught me a few things along the […]

Dear Addy: Major Medical vs. Pharmacy Coverage

February 10, 2014

Dear Addy, A friend of mine in Texas told me her son鈥檚 factor was moved from major medical coverage to under pharmaceutical coverage. Their co-pay for factor went from $75 to $3,000 per prescription. They can鈥檛 afford this. Do I need to worry about this happening to my family? Scared of Pharmacy ____________________________ Dear SP, […]

Time is Running Out 鈥 for You!

February 5, 2014

How are you supposed to find time for yourself?聽 The never-ending housework, cooking, homework, schoolwork, sports activities, meetings, volunteering, 40+ work week, can leave anyone tired. Add hemophilia to the mix with the supply ordering, delivery, bleeds, doctor appointments, missed school and work, and it can be downright overwhelming. Where can you insert 鈥渕e鈥 time […]

Applications Open: Bayer Hemophilia Leadership Development Program

February 3, 2014

The Bayer Hemophilia Leadership Development Program (BHLDP) provides college students from the hemophilia community a unique internship opportunity to build foundational leadership skills while also deepening their connection to the hemophilia community. BHLDP, now in its eighth year, gives selected interns an opportunity to work directly with the Bayer marketing team in Whippany, New Jersey. […]

PSI Letter to Secretary Sebelius About Patient Assistance Programs

February 1, 2014

On January 31, 2014 Patient Services Incorporated, (PSI) sent the below letter to聽Secretary Sebelius to highlight the importance of patient assistance programs for families and to urge the department to refine its message about premium assistance taking into account the numerous assistance models. ____________________________________________ Dear Secretary Sebelius: I would like to first take this opportunity […]

To Plan or Not to Plan

January 29, 2014

I am not spontaneous. The 鈥渟pur-of-the-moment鈥 gene did not get passed along to me, or anyone else in my family.聽 I am definitely a Type A kind of gal.聽 When it comes to holidays, vacations, and family dinners I love to make plans months in advance so it will be a memorable event.聽 Anticipation of […]

CBS News: Boy With Hemophilia Gets Gift From Denver Broncos

January 28, 2014

CBS New York 鈥 The Denver Broncos gave a Staten Island boy the thrill of his life 鈥 and they did it before even arriving in the Tri-State Area for the Big Game. As CBS 2鈥檚 Hazel Sanchez reported, Seth Patsakos, 11, and two of his three brothers all suffer from hemophilia 鈥 a rare […]

Dear Addy: Individual Mandate

January 27, 2014

Dear Addy, My daughter with von Willebrand disease has health insurance but I don鈥檛 have health insurance for myself. What will happen if I decide not to purchase any? Coverage Unsure ____________________________ Dear Unsure, The deadline to purchase insurance without facing a penalty is March 31, 2014. Because of the individual mandate under the Affordable […]


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