Good News on AIDS Survival, and Treatments

Recent studies in San Francisco and New York have found major, unexpected improvement in median survival after an AIDS diagnosis, and in long-term survival. And many physicians with large AIDS caseloads are having far fewer deaths this year than last, and fewer complications serious enough to require hospitalization, even though they have more patients.
This article examines the statistical evidence on survival in San Francisco and New York, and in the United States as a whole. It looks at why the improved survival figures may be even more important than they first seem.
We also interviewed Nathaniel Pier, M.D., a New York physician in private practice with about 300 AIDS/ARC patients, on the much lower death rate he and his colleagues are seeing this year, on current ethical issues in AIDS, and on what medical approaches seem to be making a difference. (More on this interview will appear in a later issue.) And we asked Michael Callen, a founding member of the PWA Coalition in New York, about his current interview study of long-term survivors diagnosed with AIDS for over three years.


San Francisco Survival Study

Since 1981 the San Francisco Department of Public Health has kept track of the median length of survival of persons
diagnosed with AIDS each year. (The median is not the average, but the middle of the range of length of life after diagnosis.) For the first five years median survival was unchanged, about ten months. But in 1986 it unexpectedly jumped to about 14 months.
This improved survival resulted from better outlook for persons with diagnosed with pneumocystis. Survival for KS did not improve last year, but it has always been much better than for pneumocystis.
The San Francisco Examiner interviewed Dr. George Lemp, an epidemiologist with the Department of Public Health, and reported this increasing survival on November 6 (page A4); so far there has been little notice of these results outside of San Francisco. No one knows for sure why persons are suddenly living longer after an AIDS diagnosis, but San Francisco epidemiologists suspect that it may be due to prevention and better treatment of pneumocystis, and/or to use of AZT.
We asked Dr. Lemp for more details on the new findings, and on how the research was conducted. Information on what treatments people used was not recorded. This is an epidemiological study not a clinical one, and keeping track of all the different diagnoses and treatments would have been difficult. In June of this year the epidemiologists did start
asking what antiviral drugs each person used, so by early to mid 1988 they will be able to start checking on correlation of survival with use of AZT.
How were the annual medians derived? Dr. Lemp explained that, for purposes of analysis only, all patients diagnosed with AIDS within a given calendar year were followed as a cohort. Because persons with AIDS often survive for a long time, the median survival cannot be estimated accurately until well after the year has ended. For example, the "1986" data includes followup through August of 1987. For this reason it is too early to know 1987 results yet. But very early indications are that 1987 looks better than 1986.
No one knows for sure why the median survival time increased in 1986, when it had not done so before. But it
seems reasonable to guess that the improved survival is due to treatments. We do not have scientific proof But it is hard to devise any other plausible explanation.
Few new treatments were widely used in 1986, the year of diagnosis for the cohort which survived longer; AZT, aerosol pentamidine, and AL 721, for example, had only reached a few. But since the 1986 survival data actually includes what happened as late as August 1987, treatments received in 1987 could also have had an effect.
Before August 1987, both AZT and aerosol pentamidine had become widely used in San Francisco. Less publicized
improvements in clinical treatment for pneumocystis and other infections were also being used on enough patients that they might have affected the survival statistics.
What about alternative treatments? On AL 721, the all-egg generic versions arrived here in late summer, probably too late to affect the 1986 survival median; the soy-based "home formula" arrived in January 1986, however, so it might have had an effect. It would be worth checking whether other treatments, such as ribavirin, DNCB, megadose vitamin C, or
certain herbal treatments, first became widely used during the time when they might have contributed to improved survival of the 1986 San Francisco cohort.
If it is true that one or more treatments are responsible for the 1986 improvement, they would probably be adding much more than the four months of additional survival seen in the median figures. For only a minority of persons in San
Francisco had access to new treatments and chose to use them by early 1987. And those diagnosed in early 1986 were largely affected by 1986 treatment anyway. For both these reasons, the four-month figure includes the majority which was not treated and presumably did not survive longer than those diagnosed in previous years. Therefore, the minority which did get new treatments and presumably accounted for the four-month increase in the median survival must have had much more than a four- month improvement.


New York Survival Study

The most detailed study yet on AIDS survival was published in the New England Journal of Medicine, November 19, 1987, and widely reported in the press at that time.
This study by the U.S. Centers for Disease Control of over five thousand persons diagnosed with AIDS in New York City found as many as 15 percent surviving up to five years. Although the researchers admitted that they may have missed some deaths, they concluded that the general impression that AIDS is always fatal cannot be supported. The existing evidence does not rule out the possibility that some people could live indefinitely with AIDS, or could recover.
This New York study included only patients diagnosed through December 1985. Therefore its findings would not
reflect the improvement (presumably due to new treatments) shown in the 1986 San Francisco cohort discussed above.


National Survival Study

Seemingly contradictory and much more pessimistic results of a smaller study at the Centers for Disease Control (CDC) were released at a conference on October 5, 1987 and widely reported in the press the next day.
This study, by researcher Ann Hardy, was designed to check the reliability of the official CDC estimate that 15 percent of persons with AIDS survive three years, by verifying that the people on whom that statistic was based were indeed still
alive. Only two to five percent had been determined to be alive, and the news stories which went out listed the three-
year U.S. survival rate as only two to five percent. This figure differs greatly from the New York and San Francisco
findings.
We spoke with Ms. Hardy, who pointed out that San Francisco might have longer survival times than elsewhere in
the country because more persons with AIDS here have KS, and those with only KS survive much longer than others, on the average. She did not know why the New York results differed so greatly from hers, and referred us to the researchers who conducted that study. We reached one of the researchers, but were unable to get the permission required for an interview by press time.
Ms. Hardy's study only involved persons diagnosed with AIDS in December 1983 or before. Therefore it has no bearing on the major San Francisco result, the large increase in survival for those diagnosed in 1986 compared to any previous time.


Long-Term Survivor Interviews

Michael Callen, a founding member of the PWA Coalition in New York and himself a long-term survivor diagnosed in 1982, is interviewing persons who have survived with an AIDS diagnosis for over three years. So far he has interviewed 17 persons. Results will appear in an article and probably in a book. Meanwhile, Mr. Callen told us of some of the early, often surprising findings so far.
Here are some of his preliminary observations. Be careful in interpreting them. The fact that these survivors made
certain choices three or more years ago, when their options were very different from the options today, does not necessarily imply that people should make the same choices today.
* Persons can survive far longer with KS than many have been led to believe. Persons can lead a long and happy life with KS.
* Only three of the 17 used aggressive chemotherapy. One of these was in a suramin trial, and almost died. The other used HPA-23. A third is now on AZT (see below).
* Mr. Callen at first had trouble finding persons who had survived three years after a pneumocystis diagnosis (a
diagnosis made three or more years ago, before improved treatments were available). But eventually he did find persons who have survived for four years, and for four and a half years, after the diagnosis.
* Only one of the long-term survivors is on AZT. Others said if it wasn't broke, don't fix it. They had done well
before AZT became available, and didn't want to rock the boat.
* All of them had dabbled in alternative approaches. With KS, there were several striking stories of success with
macrobiotic or vegetarian diets. About half of the long-term survivors had made major diet changes. And the rest paid more attention to their diets.
* Most or all had used approaches such as shiatsu massage, acupuncture, or visualization. A clear majority were involved with groups such as Louise Hay, or AIDS Mastery.
* All but two found solace in religion--about half in the religion of their childhood. Others did not seek organized
religion, but spoke of spirituality, or a sense of oneness. None became Bible-thumping fundamentalists. All who did become involved in churches were critical of some aspects of organized religion.
* All said they needed hope to survive. Each had to deal in some way with the media's repeated message that everyone dies. Some found it important to know survivors; many knew each other. All but two are aggressively involved in the AIDS movement, or working with PWAs; many are in the forefront.
* They are fighters, often difficult patients, not passive. Most used a group of physicians to coordinate their
care, not just one. A majority have fired a physician, or ordered one out of their hospital room.
* Several had moving, near-death experiences.
* There was no magic bullet, no single treatment used by all the survivors. Not all of them used lipids, or
macrobiotics, or ribavirin, or anything else. Their experience suggests that AIDS is not one disease, with one substance which will work for everyone.
Mr. Callen is continuing this study. Results will appear in the Village Voice, and probably in book form also. He would
like to hear from anyone who has survived with an AIDS diagnosis for over three years. He can be reached in New York
at the PWA Coalition, (212) 627-1810.


To Be Continued

Later articles will examine the experience of AIDS physicians who have had fewer deaths and serious infections
this year than last, despite having more patients. We will examine physicians' views of what does and does not work in
AIDS treatments and care, and in the development and application of new drugs.