ACT UP: Real Treatments for Real People

About the Index

This is an interim version of an overview of what is out thereöthen you can do more investigating! I realize the terminology may be denseöit's the only way to get this much information in so little space. If you have a question about a word, don't be put offöthere are a number of sources you can go to (including medical dictionaries like Dorland's, Stedman's or Taber's, treatment activists, your healthcare provider, etc.) If you have questions, contacts, suggestions, updates, insights, etc., please contact me at (212) 673-2531.You can send e-mail to gmc0@ix.netcom.com. PARTICULAR HELP IS SOUGHT FOR CHANGES IN TELEPHONE NUMBERS/CONTACT ADDRESSES LISTED HERE!

Unfortunately, many of the items listed herein are not in any clinical trial or are not covered by many medical plans. Access is therefore a problem. One activist effort ACT UP is engaged in is endeavoring to force the National Institutes of Health (NIH) out of their stodgy, narrow-minded and arrogant attitudes into assessing what people are doing in a meaningful way. This is called the REAL TREATMENTS FOR REAL PEOPLE CAMPAIGN. Assessing therapies tells us if what people are doing is helping or notöor hurting. And if helping, to get an idea on the strengths, limitations, problems, dosing, scheduling and other types of questions that help achieve the maximum benefit. In addition, if NIH performs these studies and shows efficacy, it may open physicians' minds to use of such ignored options while driving public policy (insurance companies, Medicaid, etc.) to cover them.

The first issue is what to study. There are many anecdotal reports, scientific evidence and other rationales for reviewing a variety of alternatives. Some of these include anabolic steroids, combinations of micronutrients, hyperforat, combination antioxidant therapy, DNCB, glycyrrhizin, transfer factors, combination thymic extracts, curcumin, colloidal silver (as an antimicrobial), Chinese and other herbs, bitter melon (not just the MAP 30 extractöwhich still hasn't been evaluated) and so forth. There are many others. Input from the community should be the driving force in prioritizing which are most deserving of attention, not just the stultified, arrogant and blind peer review system currently extant at NIH.

Aside from the fact that many of these are unpatentable (and hence unprofitable), there is a prejudice by mainstream researchers against "complementary" approaches. This is institutional orthodoxy that flies in the face of the basic tenets of science. This anti-scientific attitude pervades the FDA, NIH, mainstream medical practice, the International AIDS Society (the people who put on the big AIDS conventions), which almost completely exclude analysis or discussion of these approaches. That is where activists must raise BLOODY HELL. There is some good news: the 1996 Vancouver conference may be MUCH better at not just welcoming but fostering a broader perspective. Unfortunately, for Americans, any foreign research on alternatives is ignored: there is an America-Only policy that prohibits use of foreign trials as basis for approval. Such arrogance!!

After determining what to look at, the next questions is how. Methodology has been limited by and large to standard trial design. While this is useful in a limited way, it is not the only way to develop meaningful, life saving information. Broadly speaking, two general approaches can be simultaneously pursued: the broad assessments and the narrow focus. The broad area are the different ways to assess the reality of people doing a wide range of therapies which change over time, following this evolution (e.g., management trials). I have been in touch with Carlton Hogan of the Minneapolis CPCRA who, with others, has developed an approach to clinical trial design called MAPS (Master Antiretroviral Protocol Strategy). It addresses the question of how to strategize trials to deal with individuals' unique needs through stratification and shifting protocols. They seek to use it not just for "nukes" but also for alternative & complementary protocols, OI protocols, etc. This is a type of management trial that reflects real world behavior while providing information on efficacy.

In parallel with this should be smaller, shorter studies that can assess anticipated impact of therapies on blood work (e.g,. effect on viral load of antivirals; effect on oxidative stress markers for antioxidants, etc.) With a large and small view working in tandem, a clearer picture may arise as to what works and what the limitations are. This description, of course, only outlines the broad strokes of such ideas; but the possibilities may well help us to understand how to deal with HIV infection in a comprehensive, integrative fashion.

Aside from clinical questions, the other major component of AIDS is the basic science or "pathogenesis": the events that occur in bodies after HIV infection that result in AIDS. The ACT UP/New York Demand for a McClintock Project to Cure AIDS has become the AIDS Cure Act and has been introduced by Gerald Nadler (D-NY) in the House of Representatives. This is an ambitious and detailed program for a "Manhattan Project" which Clinton supported, butöconsistent with his litany of betrayalsöis doing nothing about. The Project is a vigorous program to study the pathogenesis of AIDSöwhat causes the immune system to dysregulateöso that rational approaches can be developed. This is vital given NIH's long history of ignoring vital areas of AIDS research like oxidative stress. For background reading material, please see the text of the bill. We used the word "cure" which is defined as "Any and all approaches which will ensure a well-functioning immune system (including but not limited to antiretrovirals, curative vaccines and immune regulators) and a normal life span with a reasonable quality of life."

You might also review Griffin, MT, "AIDS and the Pharmaceutical Industry: A Need for Reform," American Journal of Law and Medicine, (1991) 17(4):363-410. For copies, contact ACT UP/NY at the address on page 1. This is just scratching the surface of what is wrong and why serious changes need to be made. Profit is one thing, but when it is at the expense of peoples' lives and causes unnecessary suffering, it is not an acceptable single criterion for business!

The work is enormous. It will take input from everyone. I am interested only in what works, not what label it is given. I often wind up stressing so-called alternative approaches because 1) there are few voices calling for their rigorous assessment and 2) the industries that produce them are unable (due to lack of funds), unwilling (just greedy) and/or untrained (in clinical methodology) to undertake these efforts. There is a great deal of lies, hype and false hope generated by both alternatives AND mainstream medical researchers and practitioners. And there is a treasure trove of value in each. We must seek to end these artificial distinctions by calling for rigorous science rooted in the only valuable perspective: that which improves and heals people. Undoubtedly, this will require practitioners from every field to expand their horizons and go beyond the narrow confines of their respective training.

These indices are still incompleteöand will remain so until the end of the AIDS crisis! If you have any questions, comments, corrections, additions, deletions, etc., please do not hesitate to contact me at 212-673-2531. Please feel free to copy and distribute it! But don't sell it and do not include it in publications without permission.

Source material for the Indexes is noted where possible. Sources include but are not limited to the wide range of AIDS-related newsletters (see last page), peer-reviewed and other journals, pharmaceutical company and government information and, where there is a fair amount, anecdotal information (which is noted). Background information also from various texts on disease, pharmacology and immunology. Thanks to the New York Academy of Medicine for their great help in providing resource material. A considerable amount of information is available (and used herein) from computer networks, notably AEGIS (San Juan Capistrano, CA), HIVNET (Amsterdam, The Netherlands) and The Backroom's Talking About AIDS (New York). See the last page for a more complete (but not exhaustive) listing with modem telephone numbers. An incredibly BIG IMMENSE HUG of gratitude to Lark Lands for re-writing the nutrition section, her invaluable support, insights, help and expertise through out; so plug #2 for her forthcoming book, Positively Well: Living with HIV as a Chronic, Manageable, Survivable Disease by Lark Lands: Available late summer! Order: 1-800-542-8102, outside North America or in Toronto, Ontario, Canada call 905-672-7470.

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