562-4280 AREA CODE (516) Department of Medicine Division of Infectious Disease 8i l~munoiogy April 29, 1985 Dr. Harold E. Varmus Chairman Retrovirus Study Group University of California, San Francisco School of Medicine Department of Microbiology and Immunology San Francisco, California 94143 Dear Dr. Varmus: OR May 1st an International Committee will convene to determine a uniform nomenclature for the viruses that have been isolated from patients with AIDS and AIDS related disorders. Scientists concerned with the nomenclature for this virus are now deter- mining the similarity of this agent to the Lent5 viruses and to HTLV-I and HTLV-I1 and to other agents. Currently, three different terms are being used to describe these retroviruses: 1. the human T cell lympho- tropic virus 111 (HTLV-III); 2. the lymphadenopathy virus (LAV); and 3. the AIDS related virus (ARV). While scientist wrestle with the appropriate place in nature for this agent, we as clinical scientist, would like to request that this Committee avoid using clinical syndromes, especially AIDS, in the final name for this virus. First, it is not yet: clear that all patients infected with this virus will contract AIDS as defined by the Center of Disease Control. Clearly, many patients have now been found to be producing antibody to the virus; yet they do not have detectable i~unosuppression, and they are asymptomatic. Second, most patients with AIDS no longer have lymphadenopathy because their nodes have been destroyed by virus attacking resident T and B cells the node. Furthermore, many patients with lymphadenopathy have nodal enlargement in response to other agents such as cytomegalovirus, syphilis, tuberculosis, mycobacterial infection, Kaposi's sarcoma, angioimmunoblastic sarcoma, and lymphoma. lymphadenopathy is to determine what pathologic process might be occurring in the nodes other than a reaction to the virus felt to cause AIDS. Finally, it has not yet been shown whether the lymphadenopathy seen in this viral disorder is due to the activity of factors released from T cells infected with the virus or to reactions to other infectious agents ( such as CMV or EBV) which have been reactivated because of T helper cell loss. In fact, the main task of the clinician caring for a patient with 300 Community Drive, Manhasset, New York 11030 A VOLUNTARY NON-PROF13 HOSPITAL Page Two ..... In experiments using DNA probes, very few virally infected cells have, in fact, been identified in such lymph nodes. Focusing the name of the virus on one aspect of the vast clinical spectrum of illness such as AIDS or ARC may divert attention from more accurate clinical descriptions of the full array of disease that this illness can produce. It has now been shown that the major effects of this virus are the destruction of T helper cells and infection of cells within the brain. A major task of the clinical scientist is now to understand how conditions such as Kaposi's sarcome, lymphoma, angioimmunoblastic sarcoma, thrombo- cytopenia and neurologic dysfunction arise on a molecular level if we are to come to grips with this virus. The last major aspect to consider in determining the nomenclature of this virus must be the emotions of the patient who is infected with this agent. Patients told that they have infection with the AIDS virus develop devastating psychological symptoms that have been witnessed by all clinicians dealing with these patients and their families. it leaves no hope for the patient, implying that the patient will inevitably develop and die from AIDS. disease it was first felt to produce, it would have been called the Burkitts lymphomas virus, By analogy, one can imagine the distress caused to a pa- tient infected with EBV if told that: he had the Burkitts lymphoma virus. Fortunately, in EBV, by not focusing our attention on a clinical syndrome, we have been better able to study its biology. have been called the B cell virus. It is a cruel name for the virus for If we were to have called the EB virus by the Even this virus might better In light of all of the factors discussed, we must urge the nomenclature Committee to specifically not use the word AIDS or other related syndromesin the terminology agreed upon to describe this virus. suggest that the Committee call this virus at least a T cell lymphotropic neurotropic agent. Certainly, this would more accurately reflect and describe the virus, and would allow the three to four million people currently infected with the virus to have some hope that they may be among the lucky ones who will not inevitably contract and die from AIDS. More specifically, we Dr, Mark H. Kaplan Associate Professor of Medicine Cornel1 University Medical College Chief of Infectious Disease 6 Immunology North Shore University Hospital Manhasset, New York 11030 Dr. Jerome E. Groopman Associate Professor Harvard School of Medicine Chief Division of Hematology/Oncology New England Deaconess Hospital Boston, Massachusetts 02215 Page Three ..... Dr. Sheldon H. Landesman Associate Professor of Medicine State University of New York-Downstate Medical Center Department of Medicine Division of Infectious Disease Brooklyn, New York 11201 Dr. Leon Epstein Assistant Professor of Neuro-Science & Pediatrics University of Medicine ii Dentistry of New Jersey Medical Science Building 100 Bergen Street Newark, New Jersey 07103 Dr. Steven Marlowe Assistant in Medicine Infectious Disease Division Beth Israel Hospital Instructor in Medicine Harvard Medical School MHK/ccc