Characterization of long-term survivors of acquired immunodeficiency syndrome. The Long-term Survivor Collaborative...

Of 4,073 reported patients diagnosed with AIDS from 1978 through 1983, 821 (20%) were not reported to be dead by January 1987. Of these apparent long-term survivors, 780 (95%) were reported from 14 states or from local areas where collaborating health departments conducted special follow-up investigations: 119 (15%) were found to be alive, 475 (61%) were dead, and 186 (24%) were lost to follow-up. Health departments obtained consent to collect additional clinical and laboratory information on 48 of the living patients. Six (13%) had no laboratory evidence specific for human immunodeficiency virus (HIV) infection (antibody, antigen, viral isolation, or polymerase chain reaction assay); 41 (85%) had a positive result on at least one test; and one was not tested. Of the 41 infected patients, 25 (61%) had Kaposi's sarcoma (KS) and two (5%) had Pneumocystis carinii pneumonia as the only AIDS-indicative disease; the remainder had multiple diseases. CD4+ cell counts were low (less than 30% of total T lymphocytes) by the time of enrollment in 34 (87%) of 39 patients tested. When enrolled survivors with KS were compared with KS patients who had died within 2 years after AIDS diagnosis, survivors were less likely to have had other diseases in addition to KS than were nonsurvivors (31% versus 51%). While overall mortality by 1987 for patients diagnosed in 1978-83 was high (92-96%), a small number have survived and were doing relatively well clinically, despite evidence of continued CD4+ cell depression.