AIDS Treatment News Survey: Preliminary Report

Last August, AIDS Treatment News sent a survey questionnaire to its subscribers, asking for their overall evaluation of any treatments they had used for AIDS, HIV, or any related condition. We asked subscribers to name up to three treatments that had worked best for them or for others they knew personally. We also asked them to name the three worst treatments from their experience--meaning those which were either didn't work or seemed harmful. The survey included several questions, and left space for open-ended explanations.

Of the 5725 questionnaires sent, 391 were returned by the deadline (October 1, later extended to October 10). This preliminary article reports the number of times each treatment was listed as one of the three best, vs. one of the three worst, in all 391 questionnaires.

Many of the results were as expected, but others were surprising. Some unorthodox and conventional treatments alike did worse than we had expected.

Some of the tabulations below could be misleading; the obvious interpretation may not reflect what is really (continued below)

Table: All treatments named more than once in the survey.

Best Worst
Acidophilus 4 1
Acupressure 2 0
Acupuncture 21 0
Acyclovir 114 10
AL 721 85 46
Aloe vera 8 7
Amitriptyline 1 1
Amphotericin B 3 5
Ampligen 2 4
Antabuse 8 16
Antibiotics 0 5
Aspirin 2 1
Attitudinal healing 3 0
AZT 204 87
Bactrim (Septra) 19 46
BHT 2 4
Chanting 2 0
Chemotherapy 8 4
Chiropractic 2 1
Coenzyme Q 8 4
Cortisone 0 2
D-penicillamine 1 2
Dapsone 5 9
ddC 2 1
De Veras beverage 3 1
Dextran sulfate 61 15
DHEA 2 1
DHPG 13 0
Diet 40 3
DNCB 3 9
Doctor 2 5
Doxycycline 2 0
DTC 8 6
Echinacea 2 3
Erythromycin 0 2
Exercise 13 0
Fansidar 5 16
Fluconazole 3 0
Folic acid 2 1
Fusidic acid 0 2
Garlic 8 1
German enzymes 1 0
Germanium 6 2
Gamma globulin 2 1
Ginseng 2 1
Group 2 0
Herbs 22 6
Homeopathic 5 1
Hospitalization 0 2
HPA 23 0 3
Hydrocortisone 0 2
Hydrogen peroxide 6 6
Interferon alpha 4 7
Interferon beta 1 1
Iscador 2 0
Isoprinosine 5 5
Leucovorin 2 0
Lecithin 2 0
Love 3 0
Massage 2 0
Meditation 7 0
Minerals 3 0
Monolaurin 4 4
Mycelex 10 8
Naltrexone 13 6
Nizoral 11 6
Nystatin 5 6
Ozone 2 1
Pau d'arco 2 1
Penicillin 2 4
Pentamidine (?) 12 2
Pentamidine aerosol 105 1
Pentamidine iv 4 11
Positive attitude 11 0
Prayer 2 0
Prednisone 3 1
Propolis 1 3
Protein powder 2 0
Psychotherapy 5 0
Radiation 6 5
Relaxation 4 0
Rest 4 0
Revici method 2 2
Ribavirin 6 18
Salk polio vaccine 4 3
Selenium 3 0
Shiitake mushrooms 1 3
Sleep 3 0
Spiritual 25 3
Steps program 2 0
Steroids 0 3
Stress reduction 19 1
Sulfa drugs 0 2
Supplements 2 0
Thymus 2 0
Transfer factor 8 3
Trimethoprim 2 4
Trimetrexate 1 1
Typhoid vaccine 2 1
Visualization 16 0
Vitamins 47 12
Work 2 1
Zantac 2 0
Zinc 4 1

TOTALS 1117 489

happening. We will explain some of these potential errors, to warn the reader about the limitations of this survey. It can indicate which treatments seem to be working for people, but must not be taken as gospel.

How We Conducted the Survey

We had intended to enter all the information from the returned questionnaires into a computer database, then select various groups of survey respondents (such as those who did well with one particular treatment but poorly with another), and compare these different groups. But many people gave us several pages of comments, or medical information such as lab reports. Often the information they provided was so diverse that there was no straightforward way to process it by computer. So we computerized only the best and worst treatments, miscellaneous questions like medical degree if any and ZIP code, and brief comments. We arranged the forms for easy access by sequence number, so that we can select interesting groups by computer, then collect and examine the corresponding physical questionnaires, in the hope of finding insights into why certain treatments do or do not work for certain people.
Only the 'best' and 'worst' tabulations are available for this preliminary article, however.

Treatment Categories and Names

The following decisions affected the results reported below:

* Treatment combinations. We asked respondents to list combinations as if they were single treatments. For example, an AZT/acyclovir combination should be listed as one of the best (or worst) treatments, not as two different treatments.
But often there was no clear dividing line between what was and what was not considered a combination. For example, AZT and aerosol pentamidine might be listed together by one respondent, even though they have separate purposes, and listed separately by others.
Another problem is that there are so many different possible combinations of drugs that it is difficult to categorize them meaningfully.
Because of this confusion around treatment combinations, we decided to break combinations apart, and count each drug or treatment individually in the tabulations below--noting the important combinations here in the text.
Fortunately for the analysis of this survey, only two combination occurred often enough to greatly affect the results:
* AZT and acyclovir was listed 28 times as one of the best treatments, and only twice as one of the worst.
* Persons using food supplements often listed the entire treatment regimen as a combination. We could not analyze this information for this preliminary article, so usually we grouped them as 'vitamins' or 'herbs' in the tabulation.

* Combining related treatments in the tabulations. For this preliminary report, we grouped all 'herbs' together, also all 'vitamins', and all 'spiritual' approaches. Later we will try to report more detail, but this information is difficult to categorize, as each person's combination is often unique.
We did notice that astragalus was named in 6 of the 22 'best' herb entries, none of the 6 'worst'. And in the vitamin group, vitamin C appeared 15 times in 'best' and 5 in 'worst'. These results may change when we go back to the survey forms for more detail. Other herbs and vitamins were much less prominent in the computerized information we have examined, and we could not get meaningful numbers, at least without scrutinizing the survey forms.

* Using uniform names. We combined 'nutrition' with 'diet', 'septra' with 'bactrim', 'disulfiram' with 'antabuse', 'ketoconazole' with 'nizoral', 'ganciclovir' with 'dhpg', and 'imuthiol' with 'dtc'. We usually chose the names most frequently used by respondents.
We combined 'carrisyn' with 'De Veras beverage', but kept them separate from 'aloe'.
Note that in issue #63 of AIDS Treatment News, with which we sent the survey, we included an extensive list of treatment names. Treatments not on that list may have been under- represented in the survey results, relative to their actual use in the community.

Interpreting the Numbers: Comments and Cautions

Respondents listed more than twice as many treatments under 'best' than under 'worst'. Apparently they tended to believe that treatments they had used were helpful. A rule of thumb for reading the table printed above could be that unless a treatment has a two-to-one favorable rating in this survey, it was rated worse than the average.
But a low rating does not necessarily mean that a treatment should be avoided. A drug may have a low rating because of side effects, but still be medically advisable.
Some comments on particular therapies:

AZT is the most common single drug, with 204 of the 391 respondents listing it as one of their three best treatments, and 87 of the 391 as one of their worst. (A person could list a treatment as both best and worst, but we did not let any respondent count the same treatment as 'best' or 'worst' more than once.)

AL 721 looks slightly below the average treatment in this survey, with 85 'best' listings and 46 'worst'. The large total for AL 721 among subscribers to AIDS Treatment News may reflect this newsletter's early coverage of that treatment, and not accurately represent its prevalence in the community.

Pentamidine aerosol, with 105 'best' and only 1 'worst', may look like the top treatment of all. While it may well be one of the most valuable drugs, we expect that this survey may have unduly favored it. For most patients use pentamidine aerosol as a preventive, so they do not feel its benefit directly; what doesn't happen counts. Therefore few respondents would have listed this drug on the basis of personal experience; they must have been guided by its reputation instead. For this reason we believe that the lopsidedly good result of 105 to 1 is too extreme.

Visualization rated 16 'best' to zero 'worst'; meditation 7 to zero, and spiritual approaches 25 to 3. Clearly some people are finding these methods valuable. But the lack of negative ratings should not be assumed to mean that these
approaches work all the time. Visualization and meditation, for example, seem unlikely to be listed as treatment failures, if only because of the dynamics of how we talk and think about them.

Antibiotics, rated zero 'best' to 5 'worst', shows the opposite bias. Successful treatment would seldom be attributed to 'antibiotics' in general; more likely the specific drug or drugs would be named. Therefore the successes would not show up under "antibiotics", and only the failures would remain--as seems to have happened here. Clearly it would be wrong to conclude that antibiotics are worthless. This example, like some of the others above, shows that the survey must be interpreted carefully.

Bactrim (septra) also looks bad, with 19 'best' and 46 'worst', probably because it is often used as a preventive, meaning that patients do not notice the good that it does, while they do notice any side effects.

Dextran sulfate looks good, with responses four to one in its favor. This result may reflect real benefits. Or it could reflect the drug's reputation and publicity, plus the struggle people had to go through to get it.

A number of seemingly popular treatments look worse in this survey than we would have predicted. (When reading these numbers, remember that an "average" treatment will have about twice as many 'best' responses as 'worst', as explained above.)

For example (in alphabetical order):

* Aloe vera (8 'best', 7 'worst');
* Ampligen (2 'best', 4 'worst'; the clinical trial also showed lack of result);
* Antabuse (8 'best', 16 'worst', probably reflecting side effects);
* BHT (2 'best', 4 'worst', too few responses to give a reliable picture, although these numbers suggest that the treatment is not widely used);
* DNCB (3 'best', 9 'worst', probably due to side effects, but showing disappointingly few reports of good results);
* Hydrogen peroxide (6 'best', 6 'worst', hardly the much-touted miracle cure);
* Propolis (1 'best', 3 'worst', too few to tell anything for sure, but much worse than from the anecdotal reports we had heard);
* Ribavirin (6 'best', 18 'worst');
* Shiitake mushrooms (1 'best', 3 'worst'; this result may change when we analyze the herbs more completely).

Other treatments which look good or at least passable in this survey, in addition to the attitudinal and spiritual approaches mentioned above, include:

* Diet (40 'best', 3 'worst'; clearly a major success);
* Exercise (13 'best', zero 'worst';
* Stress reduction (19 'best', 1 'worst');
* Garlic (8 'best', 1 'worst')
* Coenzyme Q (8 'best', 4 'worst', probably reflecting the fact that it only helps those who have a deficiency);
* Germanium (6 'best', 2 'worst', although this result should be taken cautiously, because the drug can make people feel speedy and might improve its 'best' rating for that reason alone);
* Homeopathic treatments (5 'best', 1 'worst');
* Naltrexone (13 'best', 6 'worst', and low-cost and harmless);
* Rest and relaxation (each 4 'best', zero 'worst');
* Transfer factor (8 'best', 3 'worst', but expensive, given by injection, and not widely available);
* Zinc (4 'best', 1 'worst'); and
* Selenium (3 'best', 0 'worst', but beware of overdose).

Herbs and vitamins also look good. But as mentioned above, this preliminary report did not count them completely.
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