Skip to main content

Coping with AIDS in Hemophilia

  • Chapter
Living and Dying with AIDS

Abstract

Hemophilia is a lifelong, chronic disease caused by a deficiency of a clotting factor in the blood. The bleeding episodes caused by that deficiency, especially hemorrhages into the joints, have been the source of pain, suffering, and death to the people who inherited it, from ancient times until just the last half of this century.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  • Addiego, J., Gomperts, E., Gill, J., Hilgartner, M., Abildgaard, C., Parmley, R., Shapiro, A., Andes, A., Krill, C., Werner, E., Aznar, J., Courter, S., & Kingdon, H. (1989, October, 14). Lack of viral transmission in previously untreated hemophiliacs using a monoclonal ab purified, organic solvent/detergent treated plasma derived from factor VIIIc concentrate. In abstracts from the 41st Conference of the National Hemophilia Foundation (p. 1), Chicago, IL.

    Google Scholar 

  • Agle, D. P. (1975). Psychological factors in hemophilia—the concept of self-care. Annals of the New York Academy of Science, 240, 221–225.

    Article  Google Scholar 

  • Agle, D., Gluck, H., & Pierce, G. F. (1987). The risk of AIDS: Psychologic impact on the hemophilic population. General Hospital Psychiatry, 9, 11–17.

    Article  PubMed  Google Scholar 

  • Aledort, L. M. (1989). Concentrates: meeting the demand. Life Paths, 1(2), 6–7.

    Google Scholar 

  • Barret, S. (1989, January). Presentation to HIV Risk Reduction within the Hemophilia Community Conference, Las Vegas, NV.

    Google Scholar 

  • Boyer, P. B. (1989, April 1). A life in limbo. The New York Times Magazine, p. 48.

    Google Scholar 

  • Centers for Disease Control (1982). Pneumocystis carinii pneumonia among persons with hemophilia A. Morbidity and Mortality Weekly Report, 31, 507.

    Google Scholar 

  • Centers for Disease Control. (1991, May 8). HIV/AIDS surveillance report, pp. 1-10.

    Google Scholar 

  • Coles, P. (1989). French haemophiliacs awarded damages. Nature, 340, 253.

    PubMed  Google Scholar 

  • Gerety, R. J., & Barker, L. F. (1976). Viral antigens and antibodies in hemophiliacs. In National Heart, Lung, and Blood Institute: Unsolved Therapeutic Problems in Hemophilia (pp. 51–56). Washington, DC: U.S. Government Printing Office.

    Google Scholar 

  • Gjerset, G. F., McGrady, G., Counts, R. B., Martin, P. J., Jason, J., Kennedy, S., Evatt, B., & Hansen, J. A. (1985). Lymphadenopathy-associated virus antibodies and T cells in hemophiliacs treated with cryoprecipitate or concentrate. Blood, 66, 718–720.

    PubMed  Google Scholar 

  • Goedert, J. J., Sarngadharan, M. G., Eyster, M. E., Weiss, S. H., Bodner, A. J., Gallo, R. C., & Blattner, W. A. (1985). Antibodies reactive with human T cell leukemia viruses in the serum of hemophiliacs receiving factor VIII concentrate. Blood, 65, 492–495.

    PubMed  Google Scholar 

  • Hernandez, J., Gray, D., & Lineberger, H. P. (1989). Social and economic indicators of well-being among hemophiliacs over a 5-year period. General Hospital Psychiatry, 11, 241–247.

    Article  PubMed  Google Scholar 

  • Hershgold, E. J., Pool, J. G., & Pappenhagen, A. R. (1966). The potent antihemophilic globulin concentrate derived from a cold insoluble fraction of human plasma: characterization and further data on preparation and clinical trial. Journal of Laboratory and Clinical Medicine, 67, 23–32.

    PubMed  Google Scholar 

  • Jason, J., Holman, R. C., Dixon, G., Lawrence, D. N., Bozeman, L. H., Chorba, T. L., Tregillus, L., & Evatt, B. L. (1986). Effects of exposure to factor concentrates containing donations from identified AIDS patients. A matched cohort study. Journal of the American Medical Association, 256, 1758–1762.

    Article  PubMed  Google Scholar 

  • Johnson, A. J., Newman, J., Howell, M. B., & Puszkin, S. (1967). Purification of antihemophilic factor (AHF) for clinical and experimental use. Thrombosis, Diathesis, and Haemorrhage, 377-381.

    Google Scholar 

  • Johnson, J. P., Nair, P., Hines, S. E., Seiden, S. W., Alger, L., Revie, D. R., O’Neil, K. M., & Hebel, R. (1989). Natural history and serologic diagnosis of infants born to human immunodeficiency virus-infected women. American Journal of Diseases of Children, 143, 1147–53.

    PubMed  Google Scholar 

  • Kasper, C. K., & Kipnis, S. A. (1972). Hepatitis and clotting factor concentrates. Journal of the American Medical Association, 221, 510.

    Article  PubMed  Google Scholar 

  • Kingdon, H. S., Liu, S. L., Bagby, B., Cox, D., Gracien, M., Lee, M., & Courter, S. (1989, October 14). Preliminary result of recombinate™ clinical safety and efficacy. In abstracts from the 41st Conference of the National Hemophilia Foundation (p. 6), Chicago, IL.

    Google Scholar 

  • Kreiss, J. K., Kitchen, L. W., Prince, H. E., Kasper, C. K., Goldstein, A. L., Naylor, P. H., Preble, O., Stewart, J. A., & Essex, M. (1986). Human T cell leukemia virus type III antibody, lymphadenopathy, and acquired immune deficiency syndrome in hemophiliac subjects. Results of a prospective study. American Journal of Medicine, 80, 345–350.

    Article  PubMed  Google Scholar 

  • Lawrence, D. N., Jason, J. M., Holman, R. C., Heine, P., Evatt, B. L., & the Hemophilia Study Group. (1989). Sex practice correlates of human immunodeficiency virus transmission and acquired immunodeficiency syndrome incidence in heterosexual partners and offspring of U.S. hemophilic men. American Journal of Hematology, 30, 68–76.

    Article  PubMed  Google Scholar 

  • Lawrence, D. N., Jason, J. J., Holman, R. C., Murphy, J. J. (1989, February). Human immunodeficiency virus transmission from hemophilie men to their heterosexual partners. In Proceedings of the CONRAD 2nd International Workshop, Norfolk, VA.

    Google Scholar 

  • Levine, P. H., & Britten, A. F. H. (1973). Supervised patient-management of hemophilia. A study of 45 patients with hemophilia A and B. Annals of Internal Medicine, 78, 195–201.

    Article  PubMed  Google Scholar 

  • Lusher, J. M. (1989, October 14). Update on safety of clotting factor concentrates. In abstracts from the 41st Conference of the National Hemophilia Foundation (p. 26). Chicago, IL.

    Google Scholar 

  • Mattsson, A., & Gross, S. (1966). Adaptational and defensive behavior in young hemophiliacs and their parents. American Journal of Psychiatry, 122, 1349–1356.

    PubMed  Google Scholar 

  • Mindell, W., O’Neill, R., & French, S. (1989). The social and economic impact of HIV on Canadians with hemophilia. Presented at The Vth International Conference on AIDS, Montreal, Canada.

    Google Scholar 

  • National Hemophilia Foundation (1988). What you should know about hemophilia. New York: National Hemophilia Foundation.

    Google Scholar 

  • National Hemophilia Foundation (1989, November 22). MASAC policy on access to AIDS clinical trials. Hemophilia Information Exchange, 97, 1–2.

    Google Scholar 

  • Overby, K. J., Lo, B., & Litt, I. F. (1989). Knowledge and concerns about acquired immunodeficiency syndrome and their relationship to behavior among adolescents with hemophilia. Pediatrics, 83, 204–210.

    PubMed  Google Scholar 

  • Palmer, T. D., Thompson, A. R., & Miller, A. D. (1988, October 15). Recombinant human factor IX in rodents produced by gene transfer. In abstracts from the 40th Conference of the National Hemophilia Foundation (p. 12), Anaheim, CA.

    Google Scholar 

  • Price, R. W., Brew, B., Sidtis, J., Rosenblum, M., Scheck, A. C., & Cleary, P. (1988). The brain in AIDS: central nervous system HIV-1 infection and AIDS dementia complex. Science, 239, 586–592.

    Article  PubMed  Google Scholar 

  • Ragni, M. V., Gupta, P., Rinaldo, C. R., Kingsley, L. A., Spero, J. A., & Lewis, J. H. (1988). HIV transmission to female sexual partners of HIV antibody-positive hemophiliacs. Public Health Report, 103, 54–58.

    Google Scholar 

  • Ragni, M. V., & Nimorwicz, P. (1989). Human immunodeficiency virus transmission and hemophilia. Archives of Internal Medicine, 149, 1379–1380.

    Article  PubMed  Google Scholar 

  • Ross, J. (1989). People with hemophilia and HIV. Life Paths, 1, 7–9.

    Google Scholar 

  • Seeff, L. B., & Hoofnagle, J. (1976). Acute and chronic liver disease in hemophilia. In National Heart, Lung, and Blood Institute: Unsolved therapeutic problems in hemophilia (pp. 61–72). Washington, DC: U.S. Government Printing Office.

    Google Scholar 

  • Sinclair, R. (1989). The impact on children whose parents or loved ones have HIV disease. Presented at The Vth International Conference on AIDS, Montreal, Canada.

    Google Scholar 

  • Stehr-Green, J. K., Holman, R. C., Jason, J. M., & Evatt, B. L. (1988). Hemophilia-associated AIDS in the United States, 1981 to September, 1987. American Journal of Public Health, 78, 439–442.

    Article  PubMed  Google Scholar 

  • Tetrick, A. P. (1989). Medical insurance policy scrutiny. Guidelines for families with chronic disease. Worcester, MA: New England Hemophilia Center.

    Google Scholar 

  • Waskin, H., Smith, K. J., Simon, T. L., Gribble, T. J., & Mertz, G. J. (1986). Prevalence of HTLV-III antibody among New Mexico residents with hemophilia. Western Journal of Medicine, 145, 477–480.

    PubMed  Google Scholar 

  • Weiss, R. S. (1988). The experience of AIDS: Hypotheses based on pilot study interviews. Journal of Palliative Care, 4, 15–25.

    PubMed  Google Scholar 

  • Wilson, P. A., & Wasserman, K. (1989). Psychosocial responses to the threat of HIV exposure among people with bleeding disorders. Health and Social Work, 14, 176–183.

    PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 1992 Springer Science+Business Media New York

About this chapter

Cite this chapter

Wicklund, B.M., Jackson, M.A. (1992). Coping with AIDS in Hemophilia. In: Ahmed, P.I., Ahmed, N. (eds) Living and Dying with AIDS. Springer, Boston, MA. https://doi.org/10.1007/978-1-4899-2347-9_14

Download citation

  • DOI: https://doi.org/10.1007/978-1-4899-2347-9_14

  • Publisher Name: Springer, Boston, MA

  • Print ISBN: 978-1-4899-2349-3

  • Online ISBN: 978-1-4899-2347-9

  • eBook Packages: Springer Book Archive

Publish with us

Policies and ethics