Patients and physicians should know that researchers working on at least a dozen projects funded by the U.S. National Institutes of Health need tissue from persons with HIV for medical research. This includes important studies of viral reservoirs, as well as research into genes that influence how HIV causes AIDS in some but not all individuals, and other questions about how the virus acts in the body. Sometimes tissue removed in biopsies or surgeries is enough. But sometimes the organs and tissues needed can only be collected after death.
In both cases the patient must give consent in advance. For example, when a patient consents to surgery that may result in tissue that would be discarded, the doctor can ask about interest in donating it for medical research.
NIAID (the U.S. National Institute of Allergy and Infectious Diseases, which does most of the AIDS research at the National Institutes of Health) asked the National Disease Research Interchange (NDRI) to collect the tissue needed. NDRI, a nonprofit organization headquartered in Philadelphia, has contracts with physicians and hospitals throughout the country to obtain and properly preserve the tissue and make sure that it reaches qualified researchers. NDRI has been providing tissue for cancer and other disease research for over 20 years and has now started an HIV program. NDRI is not a tissue bank (although it has freezers and can prepare and store tissue in special circumstances); instead, it facilitates arrangements for the tissue to reach the researcher in a timely fashion and in proper condition for the study.
Not everyone's tissue can be used; each research project has its own requirements. Inclusion of a person's tissue often depends on his or her medical condition. For example, at this time (November 2002) researchers most need tissue from persons who were on HAART and asymptomatic, but died in an accident or other cause unrelated to HIV. Research requirements change with the different projects and cannot be predicted in advance. But NDRI would like to hear from anyone who is HIV positive and willing to donate -- either after surgery, or in case of death -- and can answer questions about current needs and research projects.
Persons volunteering to donate in case of death are strongly urged to explain their wishes to their families. Even if a potential donor has consented, his or her family can refuse and overrule their decision.
U.S. residents with HIV who might consider tissue donation, or HIV physicians, can contact NDRI at 800-222-6374 extension 237 for more information. Or check www.ndri.com for information about NDRI.
ISSN # 1052-4207
Copyright 2002 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.