HIV & You
What's Being Done

Questions & Answers



What has been done to prevent the spread of
AIDS in the hemophilia community?

The following measures have been or are being taken:

  • Viral inactivation methods now in use have made blood products used by people with hemophilia virtually free of HIV.

  • Voluntary withdrawal of potential blood/plasma donors who engage in high-risk behaviors has been encouraged.

  • All blood/plasma donations are being tested for HIV.

  • Research studies to understand the rate of HIV transmission to sexual partners are expanding.

  • Education programs are encouraging safer sex practices to prevent transmission of HIV.

  • Outreach and education efforts on HIV prevention are being directed to people with hemophilia; women; adolescents; and culturally diverse populations in the hemophilia community.

  • Expanded collaborative efforts between NHF chapters and hemophilia treatment centers are promoting risk-reduction education and comprehensive hemophilia care services.

  • Institutions and government are working to ensure access to blood substitutes such as recombinant clotting factors and improved plasma-based factor IX products.



What else has been done to respond to HIV disease in the hemophilia community?

  • HIV antibody testing and immune system monitoring of persons with hemophilia are determining if AZT or other antiviral treatment is needed.

  • HIV-infected persons who feel well are being alerted to the advantages of early treatment or participation in clinical trials.

  • Local peer outreach groups are educating HIV-infected people in the hemophilia community about the need to monitor and treat their HIV disease.



    What is the blood industry doing?

    The blood industry has been very active in its efforts to eliminate the risk of AIDS in patients receiving its product. Efforts have been directed toward producing safer products through a number of improved methods of viral inactivation, and by eliminating donors who might transmit HIV. The industry is also funding its own research on AIDS; the development of highly purified blood products; other blood-product processing methods that destroy viruses; and the use of recombinant DNA-produced (synthetic) clotting factors.



    What is the government doing?

    The federal government is involved in AIDS research and preventive services, and funding has been increasing in the past several years. At the urging of NHF, the Public Health Service, with the involvement of the Centers for Disease Control (CDC and the Food and Drug Administration (FDA), issued a series of recommendations to discourage blood donations from high-risk groups. Physician education is also supported by the Department of Health and Human Services (DHHS). The Maternal and Child Health Bureau (MCHB) has funded NHF's AIDS Education and Preventive Services(A-EPS) and the hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI).



    Q:
    What is NHF doing?

    A:
    To meet the demand for education, preventive services and information about HIV infection, AIDS, and hemophilia, NHF developed the A-EPS department. With funding from MCHB and others, this program is dedicated to providing education and support for those in the hemophilia community living with HIV disease. HANDI has been developed through funding provided by MCHB to distribute information on all aspects of hemophilia and HIV infection/AIDS. HANDI has been set up to respond to inquiries from treatment centers, chapters and individuals. The Department of Clinical Research and the AIDS Treatment Working Group of NHF have made clinical trials more widely available through the hemophilia treatment center network. Recently, NHF has become an AIDS Clinical Trial Unit (ACTU), making government sponsored drug treatment trials much more accessible to local treatment centers. In addition, information about how to get drugs through the expanded access program has been communicated to all chapters and treatment centers. The NHF AIDS Task Force has provided more than 100 advisories to chapters and bulletins to health- care providers on all major HIV/AIDS-related developments since 1982. NHF has testified before numerous Congressional committees and the Presidential Commission on AIDS. Numerous treatment center professionals and consumers have served as consultants to federal agencies to participate in the development of policies and programs serving populations at risk, including the hemophilia community.

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