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Oral history interview with Larkey DeNeff, 1991

Creator: DeNeff, Larkey
Project: Hemophilia oral history collection.
(see all project interviews)
Phys. Desc. :Transcript: 309 pages Sound recording: 6 sound cassettes
Location: Columbia Center for Oral History
Full CLIO record >>

Scope and Contents

Family history of activism; diagnosis in infancy with hemophilia; medical care and insurance, economic and political issues for people with hemophilia in early 1960s; alternative methods of healing; physical versus emotional caregiving; advent of home treatment with cryoprecipitate; disagreements over the use of Amicar as treatment for hemophilia; difficulties of receiving education as a person with hemophilia; involvement with producing educational videos regarding hemophilia for hospitals and fire departments; issues of sexual abuse; sexual activity and bleeding and consequent difficulties for persons with hemophilia; anger of, prejudice of, and lack of support by hemophilia caregivers regarding AIDS/HIV; denial of HIV/AIDs in hemophilia community; early efforts at T-cell testing; production of educational videos/Public Service Announcements regarding hemophilia and DIS; recall of HIV-infected blood products; emotional/social responses to HIV; anger towards homosexuals among hemophilia community; politico-economic factors in manufacturing and distributing various blood products; involvement with National Hemophilia Foundation’s Hemophilia Leadership and Development Project; difficulties in obtaining heat-treated blood products; "AFRAIDS (Acute Fear Regarding AIDS)" among hemophilia community and the larger community; lack of interest in HIV education at both local and national level; involvement in public relations/education for American Red Cross Regional Blood Services Committee; advent of HIV testing of blood products; early experiences with HIV illness and treatment with AZT; discrepancies in hemophilia treatments and in HIV treatments for people with hemophilia in 1980s; involvement in producing a newsletter on issues of hemophilia and HIV; involvement in HIV prevention workshops for hemophilia care providers; encouragement of tolerance of diversity


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