What do healthy long-term HIV+ people have in common?

Bill Wells
HEAL Portland 1-11-97

A few common elements run through these reports - some of which are scientific papers, others anecdotal stories: most long-time survivors have (1) avoided taking chemotherapy/antiretroviral drugs such as AZT, ddI, ddC, d4T, 3TC; (2) on learning of their HIV status (HIV-positive), they stopped all high-risk activities such as drug use and unprotected sex; (3) they began taking charge of their lives, including their health.

(1) Cao, Yunzhen, et al, “Virologic and immunologic characterization of long-term survivors of HIV-type 1 infection.” in New England Journal of Medicine. January 26, 1995, 332: 201-208.

The study is based on 10 HIV+ people in New York City, all of whom had been living with HIV infection for 12-15 years when the study was done: 7 gay men; 2 IV drug users; 1 woman infected heterosexually. Their characteristics were: (1) no AIDS symptoms; (2) normal and stable CD4 cells; (3) no prolonged use of antiviral agents; (4) infection of 12 years or more.

Two important points emerge: (1) they did not use antiviral drugs; (2) they stopped all high-risk activity after they tested HIV- positive.

(2) Simmons, Todd, “Living on the edge,” in The Advocate, Dec. 5, 1995.

Story about Dennis Leoutsakas, 47, a former IV drug user, who has been HIV-positive since 1978 he thinks, when he last shared a needle. He is still living disease-free as of 1995. He has never taken AZT or any other antiretroviral drugs. He believes taking charge of his life was the single most important thing he has done to promote his ongoing health. The article also includes a brief description of 8 HIV+ Australians who have been healthy and HIV-positive for at least 15 years.

(3) Altman, Lawrence, “Long-term survivors may hold key clues to puzzle of AIDS,” in New York Times, Science Section, January 24, 1995.

Profiles a long-time survivor, Newton Butler, from San Francisco, who has been HIV+ for at least 10 years, maybe 15 years. He is a picture of health. Works full-time, hikes, exercises, and has never taken anti- HIV medication. “Soon after learning he was infected, Mr. Butler realized that his best chance of survival was by taking charge of his own health. ‘You have to depend on yourself and not on an abstract overseer such as the Government, and you have to establish your own self- management regimen,’ he said. Mr. Butler attributes his favorable situation to a combination of a ‘certain feistiness,’ a good genetic makeup. . . and exercise, a good diet, taking as few medications as possible, limiting alcohol intake to an occasional glass of wine, and never having smoked. He said he has practiced safe sex since 1981. . . .”

(4) Munoz, A. “Disease progression of 15% of HIV-infected men will be long-time survivors.” In AIDS Weekly, (News Report), May 15 & 29: 5-6; 3-4.

Reports that not one of the long-term survivors at risk for AIDS, the MACSA study, had used AZT.

(5) Root-Bernstein, Robert. “Five myths about AIDS that have misdirected research and treatment.” In Genetica (1995) 95: 111-132.

The study documents that long-term survivors discussed here all avoided antiviral drugs and had given up or never had taken recreational drugs.

(6) Wells, J. “We have to question the so-called facts,” in Capital Gay, August 20, 1993, 14-15.
A description of long-term survivors.

(7.) Pantaleo, G. et al. “Studies in subjects with long-term nonprogressive Human Immunodeficiency Virus Infection.”
In New England Journal of Medicine, 332:209 (1995)

Fifteen long-term non-progressors studied: usually living longer than 10 yrs.; no decline in CD4s; had not taken any antiretroviral drugs.

(8.) Hogervorst, E. et al. “Predictors for non- and slow progression in HIV type-1 infection: low viral RNA copy numbers in serum and maintenance of high HIV-1 p24-specific antibody levels.” (Amsterdam)
In Journal of Infectious Diseases, 171:811 (1995)

Subjects: homosexual men in Amsterdam. Three groups, all HIV+ for p24 antibodies: either (1) not, or (2)slowly or (3) rapidly progressing to AIDS.
(1) long-term asymptomatic: at least 7 years asymptomatic; T cells at 400 or above; (2) slowly progressing, same as #1 but decline of T-cells after 4 years.

“None of the LTAs [long-term asymptomatics] or slow progressors received any antiviral drugs during the study [ 7 years].”

(9) Harrer, Thomas et al. “Strong cytotoxic T-cell and weak neutralizing antibody responses in a subset of persons with stable nonprogressing HIV type-1 infection.”
In AIDS Research and Human Retroviruses, 12: 585 (1996)

Ten HIV+ people; 11-15 years infected; non-progressors; maintained stable T-cell counts above 500. “These long-term nonprogressors are a heterogeneous group with respect to viral load and HIV-1 responses.”

“Selected solely on the basis of CD4 counts and duration of infection. All showed the same risk factor (sexual exposure), and all had... virus..., and none had been treated with antiretroviral agents.”

(10.) Buchbinder, Susan et al. “Long-term HIV-1 infection without immunologic progression.”
In AIDS, 8:1123 (1994)

588 men; 42 were 10-15 year non-progressors. “Only 38% of the HLP [Healthy long-term positives] had ever used zidovudine [AZT] or other nucleoside analogues, compared with 94% of the progressors.”

(11.) Garbuglia, Anna R. et al. (Rome, Italy) “In Vitro activation of HIV RNA expression in peripheral blood lymphocytes. . . .”
In AIDS, 10:17 (1996)

Eleven HIV+ long-term non-progressors: all stable for at least 7 years; CD4 cells >500; no AIDS symptoms; and no antiretroviral therapy.

(12.) Hoover, Donald R. et al. (Johns Hopkins) “Long-term survival without clinical AIDS after CD4+ cell counts fall below 200.”
In AIDS, 9:145 (1995)

Of the 446 men in the MACS study with 200 T-cells, 26% (118) were free of AIDS illnesses three years later.

“. . . 45% of the group who were AIDS-free > three years after CD4+ cells fell below 200 had not used these [antiretroviral therapy] treatments.”

Conclusions: “Significant numbers of individuals remain free of illnesses and AIDS symptoms > three years after CD4+ cell counts drop below 200. This occurs even in the absence of treatment.”

“. . . recent date suggest the CD8+ cell subsets play an important role in controlling HIV-1 infection.”

“This study documents that substantial numbers of (even untreated) [meaning no antiviral drugs] HIV-1 infected patients remained free of AIDS illnesses for long time periods after becoming CD4+ immunosuppressed.”

(13.) Montefiori, David C. et al (Duke Univ. Med Center, Durham, NC)
“Neutralizing and infection-enhancing antibody responses to HIV type-1 in long-term nonprogressors.”
In Journal of Infectious Diseases , 173:60 (1996)

Subjects: 24 long-term nonprogressors [LTNP] all have HIV infection for at least 7 years; CD4 cells at 600; no symptoms related to HIV-1 infection; and with the exception of 2 patients, none of them had ever received antiretroviral therapy.

(14.) Dr. Donald I Abrams, Prof. of Medicine at San Francisco General Hospital, an active participant in AIDS research/treatment from the early 80’s.

In an informal meeting with medical students on Oct. 7, 1996, Dr. Abrams made the following statements:

“In contrast with many of my colleagues at SFGH in the AIDS program, I am not necessarily a cheerleader for anti-retroviral therapy. I have been one of the people who’s questioned, from the beginning, whether or not we’re really making an impact with HIV drugs and, if we are making an impact, if it’s going in the right direction.”

“I have a large population of people who have chosen not to take any antiretrovirals since I’ve been following them -- since the very beginning. . . They’ve watched all of their friends go on the antiviral bandwagon and die, so they’ve chose to remain naive [to therapy]. More and more, however, are now succumbing to pressure that protease inhibitors are “it”. . . We are in the middle of the honeymoon period, and whether or not this is going to be an enduring marriage is unclear to me at this time, so, I’m advising my patients if they still have time, to wait.”

(Article by Mark Tanaka, “Abrams Cautious On Use of New AIDS Drugs”
in “Synapse” Univ. of California, San Francisco.)