April 29, 1985
Dear Dr. Varmus:
On 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 determining the similarity of this agent to the Lent5 viruses and to HTLV-I and HTLV-II and to other agents.  Currently, three different terms are being used to describe these retroviruses: 1. the human T cell lymphotropic virus III (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 immunosuppression, 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.  In fact, the main task of the clinician caring for a patient with 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 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, thrombocytopenia 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 is a cruel name for the virus for it leaves no hope for the patient, implying that the patient will inevitably develop and die from AIDS.  If we were to have called the EB virus by the 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 patient 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.  Even this virus might better have been called the B cell virus.
In light of all of the factors discussed, we must urge the Nomenclature Committee to specifically not use the word AIDS or other related syndromes in the terminology agreed upon to describe this virus.  More specifically, we 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.
Dr. Mark H. Kaplan
Dr. Jerome E. Groopman
Dr. Sheldon H. Landesman
Dr. Leon Epstein
Dr. Steven Marlowe