Regina Butler, RN
Regina Butler, RN has been nursing families with hemophilia since 1973. Given the intensity of treatment required for hemophilia, the relationship between families and medical caregivers quickly grew intimate. Her hemophilia clinic located at the Children’s Hospital of Philadelphia was one of the few to offer families an alternative to the contaminated Factor medication in the midst of the AIDS crisis. As a result, her clinic had a 20% rate of HIV infection rather than the 70% experienced nationwide. Still, her heartbreak is palpable when she explains, “We went to funeral after funeral after funeral of children who we knew for their whole lives. Who we cared about tremendously. And who we felt so helpless to protect from their ultimate demise. It was very, very, very painful.”
David Castaldi was the President of Hyland/Baxter from 1977 through 1987. During his administration a German company developed a safer, virus-free medication for hemophilia. Within three years, Hyland Baxter released a comparably safe product in the U.S. despite two decades of insistence it was not technologically feasible. It was that technology that ultimately ended the AIDS epidemic among hemophiliacs. Castaldi left the plasma industry in 1987 well before litigation revealed the troubling manufacturing practices and business decisions that resulted in the infection of 10,000 hemophiliacs with HIV and 15,000 with hepatitis.
Shelby Dietrich, MD
Shelby Dietrich, MD began her career as a pediatrician transferring to hemophilia care in 1957. She remembers those early years were not a happy time “marked by death, bleeding, terrible catastrophic problems, overwhelming blood loss, and occasionally screaming children.” One of the few women in her field, she pioneered the use of physical therapy and counseling revolutionizing modern hemophilia treatment. As AIDS decimated her patient community she stuck by her patients becoming an expert in both hemophilia and AIDS management. Now in her 80s and retired, Shelby reflects on the enormous burden she carries having lost far too many of her boys. “I suppose the only lesson I can think of is that we should really be honest…even communicating one’s unknowns and fears is better than not communicating at all.”
Bruce Evatt, MD
Bruce Evatt, MD began his career as a hematologist treating patients with hemophilia. In 1976 he transferred to the Hematology Division of the Centers for Disease Control. He received the first call to the CDC reporting a patient with hemophilia had died of pneumocystis carinii pneumonia – the rare syndrome affecting, until that point, only gay men — and understood almost immediately the repercussions for the hemophilia community. From that point forward, Bruce Evatt was on the frontlines trying to slow the spread of AIDS among hemophiliacs. He spearheaded the experiments to prove heat would kill HIV in Factor concentrates that ultimately ended the AIDS epidemic among hemophiliacs. Now retired, Evatt continues to lecture around the country warning, “This will happen again.”
John Finlayson, PhD
John Finlayson, PhD is a 50-year veteran in the regulation of biologics, specifically blood products. He began in 1958 when his division was housed at the National Institutes of Health and then moved under the auspices of the FDA in 1972. While Dr. Finlayson’s regulatory responsibilities included oversight of blood products not used in the treatment of hemophilia, Dr. Finlayson worked cheek by jowl with Dr. David Aronson, lead regulator for Factors 8 and 9, since their start together in 1958.
Jenny Kleiner is the wife of Mathew Kleiner (see below). She is an attorney raising her triplets, Samuel, Megan and Abigail, now seven years old, in Connecticut.
Born in 1971, Mathew Kleiner was diagnosed with hemophilia when he was three years old. Diligently taking his Factor concentrates to manage the bleeding episodes of hemophilia, at 10-years old he was infected with HIV and hepatitis C by those very medications. Mathew Kleiner became a vocal safe sex advocate appearing on MTV, HBO, and in the New York Times during the 1990s at a time when hostility towards people with HIV was pronounced. Kleiner grew up in Brooklyn with director/producer Marilyn Ness and approached her in 1999 to make a film about hemophilia in the age of AIDS.
Father of Mathew Kleiner currently residing in Queens, NY with his wife Suzanne.
Mother of Mathew Kleiner. While hemophilia, a sex-linked genetic disorder, can be caused by a spontaneous genetic mutation it is generally passed by a mother to one or more of her sons. In the case of the Kleiner’s, Suzanne passed the disease onto her older son, Mathew, but not her younger son, Daniel. The Kleiner’s were not aware hemophilia ran in their family until an older cousin was diagnosed and doctors recommended all related males be tested. Suzanne currently resides in Queens, NY with her husband Sidney.
Dana Kuhn, PhD
Dana Kuhn, PhD is a minister and holds a PhD in clinical psychology. Suffering from mild hemophilia he was not diagnosed with the disease until he was 17 years old. In March, 1983 he suffered a broken ankle during a basketball game and received his first-ever infusion of Factor concentrate which was contaminated with hepatitis C and HIV. His story led him to become a vocal activist in the hemophilia community seeking restitution for the community’s injuries and reforming the system that failed them. He was the first patient advocate to serve on the Health and Human Services Blood Safety Advisory Committee. Today he is the Founder and President of Patient Services, Inc., a non-profit organization that helps patients with catastrophic chronic illness find and finance adequate health coverage. Kuhn underwent grueling interferon treatment to clear his hepatitis C by 1996. He is still living with HIV/AIDS. He resides in Virginia with his second wife, Jan, and his twin “HIV-free” babies.
Robert Massie, Jr.
Rev. Robert Massie, Jr., author, Episcopal priest, political candidate, and former anti-apartheid activist, was born with hemophilia in 1956. In the process of learning to deal with his disease, his parents, both writers, began to study its history, including the information on the most famous hemophiliac, the Tsarevich Alexis, son of Nicholas II, the last tsar of Russia. Their experience led to Robert Massie Sr.’s book Nicholas and Alexandra. The Massie’s also documented their son’s early trials in their jointly-written book Journey. Though he was infected with HIV by Factor concentrates, Massie did not develop any symptoms of HIV or AIDS and has been the subject of various studies of asymptomatic carriers of HIV. He ran for the post of Lt. Governor of Massachusetts in 1994, becoming the first HIV-positive Democratic candidate by winning a statewide primary. He had to step down from his position as Executive Director of Ceres, a non-profit concerned with global climate change, due to health problems stemming from his contraction of hepatitis C years earlier. In July, 2009 he had a successful liver transplant in a rare “domino procedure”. (A woman with an enzyme disorder received a new liver and then donated her liver to Massie, who could produce the enzyme in his other organs.) He is now cured of hemophilia. He currently resides in Boston with his wife Anne and three children. UPDATE: With his new-found energy Bob is once again working for the public good by running for the U.S. Senate in 2012! To learn more visit bobmassie.org .
Terry MacNeill is the mother of Brian and Shawn, both severe hemophiliacs. Brian spent 300 days in the hospital before his third birthday due to the complications of hemophilia. Both boys were infected with HIV during the 1980s AIDS crisis. Shawn passed away from AIDS-related illness in 1996. Brian is married and currently lives in Boston with his wife and son. In 1998 Terry MacNeill became the Co-Vice President of COTT, the Committee of Ten Thousand, named for the number of men believed to be infected with HIV by Factor. She was active in the passage of the Ricky Ray legislation that awarded $100,000 to each HIV-infected hemophiliac. She currently resides in the Boston area with her husband, her son Brian, his wife, and their child.
Mary Lou Murphy
Mary Lou Murphy is the mother of Matt and Leo Murphy, both infected with HIV by their factor products. Matt was an early founding member of COTT; her other son Leo, was the co-founder of COTTWEST. Murphy is the longest serving COTT board member and active in the passage of the Ricky Ray legislation that awarded $100,000 to each HIV-infected hemophiliac. Both her daughter and granddaughter are hemophilia carriers. Murphy currently resides in the Boston area.
Glenn Pierce, MD
Glenn Pierce, MD PhD has seen the HIV/hemophilia tragedy from every perspective. Born with hemophilia in 1955 he spent the first years of his life enduring the crippling disability and prolonged hospitalizations of hemophilia. With the arrival of Factor concentrate in the 1960s he was able to shed his wheelchair for crutches, his crutches for braces, and ultimately walk on his own. He was infected with HIV in 1982 while earning his medical degree and went on to earn his PhD researching coagulation disorders. Always active in the National Hemophilia Foundation at the local chapter level, in 1992 he became President of the organization during a tumultuous period, just as the full scope of the HIV tragedy was coming to light. He assumed a second term as President in 2000 and helped restore trust in the national organization. Throughout the 1990s he served on the Health and Human Services Blood Safety Advisory Committee. He served as Scientific Head of U.S. Research for Bayer Pharmaceuticals (Bayer had acquired Cutter, one of the early manufacturers of Factor concentrate) working in their hemophilia division. In 2009 he left Bayer and is making boardroom decisions developing new hemophilia therapies as Chief Medical Officer and Vice President of the Hemophilia business at Biogen. In 2002, suffering from the ill-effects of hepatitis C, he received a liver transplant curing him of hemophilia. He commutes between Boston and San Diego where he lives with his wife Bea.
Susan Resnik, DrPH
Susan Resnik, DrPH served as the Director of Education for the National Hemophilia Foundation from 1982 to 1983. She was sitting at her desk at the Foundation when Executive Director, Alan Brownstein, came out of his office to say Dr. Bruce Evatt of the CDC had called explaining three hemophiliacs had come down with AIDS. What began as her doctoral thesis was soon published as Blood Saga: Hemophilia, AIDS, and the Survival of Community (Univ. of California Press, 1999), which is recognized as the seminal book on the history of the American hemophilia community. Dr. Resnik taught doctor/patient communication at the University of California, San Diego Medical School and founded Viewing Voices, an oral history documentation company.
Donna Shaw was a business reporter for the Philadelphia Inquirer from 1993 through 1999. She worked the Business beat focusing on the pharmaceutical industry in particular. In 1993 she came across a small story on the AP wire describing a lawsuit that had been brought by hemophiliacs against the blood products industry. She spent the next four years covering the story for the paper. Her research took her back more than a half-century delving through medical journals, army archives from WWI, WWII, and the Korean war to try to piece together what led up to the largest medically-induced disaster of the 20th Century. She continued to cover the tech/pharma beat writing a series on the diet drug Fen Phen that was ultimately pulled off the market due to health risks. Today Donna Shaw teaches journalism at The College of New Jersey including a course about how business and politics impact science. She is currently writing a book about the HIV/hemophilia tragedy.
Eric Weinberg, JD was approached in 1991 by a woman whose hemophilic husband had died of AIDS and unknowingly infected her with HIV. Weinberg had some experience handling FDA-licensed products that had injured people and agreed to investigate whether she had a case against the companies whose products infected her husband with HIV. Upon filing the first lawsuit more hemophiliacs became aware of the potential to litigate and Weinberg was referred other clients throughout the tri-state area, including Mathew Kleiner. Cases nationwide joined in a class action suit and Weinberg developed the case around the companies’ failure to implement viral inactivation. Inspired by their courage in the face of HIV infection Weinberg explains, “I felt like this was what I went to law school for, this was the case. So for better or worse, you know, I took it on and just kept going.” It took ten years before the litigation settled. “What we’ve learned in these several years, in hundreds of depositions, in millions of pages of documents, proves the case without question. But it took too long.” He has since gone on to litigate the Vioxx and Baycol injury cases. He resides in Highland Park, NJ with his wife and four sons, two of whom were born during the litigation of the HIV/hemophilia cases.
Ryan White was an American teenager from Kokomo, Indiana who became a national poster child for HIV/AIDS in the United States after being expelled from school because of his infection. A hemophiliac, he was infected with HIV by contaminated Factor products and, when diagnosed in 1984, was given six months to live. Though doctors said he posed no risk to other students, AIDS was poorly understood at the time, and when White tried to return to school, many parents and teachers in Kokomo rallied against his attendance. A lengthy legal battle with the school system ensued, and media coverage of the struggle made White into a national celebrity and spokesman for AIDS research and public education. Surprising his doctors, White lived five years longer than predicted and died in April 1990, shortly before he would have completed high school.
Ricky, Robert, and Randy Ray were three hemophiliac brothers who were diagnosed with HIV in 1986. They were the subject of a federal court battle against the De Soto County School Board to allow the children to attend public school despite their diagnosis. Although the Rays were victorious in their legal battle, the Ray home was burned down a week after the 1987 decision, forcing the family to leave Arcadia. Ricky Ray died in 1992 at age 15. Robert was 22 when AIDS claimed him in 2000. Randy Ray lives in Orlando, Florida, and manages his HIV through medication. In 1998, Congress passed the Ricky Ray Hemophilia Relief Fund Act, paying restitution to those hemophilia patients who contracted HIV from July 1, 1982 to December 31, 1987.