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AIDS Treatment News
January 7, 2000

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Contents:

  • 2000 Outlook
    Our look at some important treatment-research directions at this time -- including HIV-specific immunity, antiretroviral development, lipodystrophy, nutrition, and how research could be improved; also a look at some non-research treatment-access issues.
  • Retroviruses Conference Report by Telephone Conference, February 2
    The very important 7th Conference on Retroviruses and Opportunistic Infections will take place January 30-February 2 in San Francisco. Developments will be summarized in a one-hour telephone conference report on February 2. The teleconference is free, but advance registration is required.
  • Lipodystrophy Report by Telephone Conference, February 9
    This free teleconference will present latest results on metabolic complications and body-fat changes in HIV disease; participants can ask questions of the panel of experts. Advance registration is required.
  • Three Activist Meetings, San Francisco, Late January
    Three treatment activist meetings are being scheduled for San Francisco while people are in town for the 7th Conference on Retroviruses and Opportunistic Infections.
  • Neuropathy: Practical Book on Mainstream, Alternative Options
    Peripheral neuropathy causes numbness, pain, or weakness, especially in the feet or hands. Numb Toes and Aching Soles discusses dozens of treatments now in use, and includes about 200 comments from patients on their own experiences with them. The book's main value is in familiarizing readers with the treatment options available.
  • Acupuncture Detoxification Meeting, San Francisco, January 28 and 29
    Acupuncture is used as part of a protocol which appears to be very successful in substance-abuse treatment. Results will be presented in this two-day international conference.
  • Disability Benefits: New Law Will Help Disabled Return to Work
    The Ticket to Work and Work Incentives Act, which became Federal law in December 1999, will help disabled persons return to work with less risk of losing their medical benefits. But this complex law will gradually become effective over the next few years, and some of its provisions will apply only in states which have chosen to participate. Expert advice will still be necessary for persons who want to try to return to work but are not sure they will be medically able to do so.


For subscription, donation and editorial information and to read our Statement of Purpose, visit AIDS Treatment News' page here at The Body.

2000 Outlook

by John S. James


Each January we publish our overview of the AIDS treatment outlook for the coming year.

The current picture is unclear; we have heard less scientific news recently, but that does not mean less is happening. Much more will be known after the Retroviruses conference, January 30-February 2 in San Francisco. (The earliest overviews and summaries of treatment news will be on the Web during or shortly after the conference; an accessible one-hour summary will also be available by telephone conference on February 2 -- see "Retroviruses Conference Report by Telephone Conference" below, in this issue.) Here is our view of some of the important research areas, and treatment-access issues, as of today.


HIV-Specific Immunity

When first infected, the body itself can control HIV much better than any known drug combination. But gradually this ability is lost, for reasons which are in large part unknown. If we could understand the mechanisms involved, it may be possible to retain or restore this natural immunity, and keep HIV infection under control with much less intensive use of drugs than now required.


Antiretrovirals

But meanwhile it is the antiretrovirals which are saving lives (and these drugs will probably also need to be used with immune-based therapies as well). Medical research on antiretrovirals can generally be divided between looking for small improvements (developing the next protease inhibitor with marginal benefit over existing treatment, or conducting the huge, slow trials often needed to prove that this benefit exists), vs. looking for fundamentally new treatments which exploit different points in the viral life cycle or the pathogenesis of HIV infection. Both kinds of research are necessary, and are proceeding.

We are concerned, however, that large institutions are structurally biased toward seeking the small but more predictable advances; pharmaceutical companies get another pill to sell, and university research centers get large, standardized trials with predictable staffing demands. The result is an overall misdirection of research effort and resources.


Lipodystrophy

Lipodystrophy research has produced some theories, but no clear picture of what is going on -- and no clearly superior treatments, although there are treatments which do work sometimes. Our view is that the research is suffering from a large-institution bias, leading to a focus on creating a definition so that different researchers' reports will be comparable, and on obtaining reliable statistics, in part to justify funding.

Our choice would be to start from the other end -- with sophisticated, well-funded research projects each studying a single well-selected patient, or at most a few patients, to use every means possible to discover the mechanisms behind that person's problems, and what can be done to treat them. Of course one patient will not be representative of all, but almost certainly any effective treatment found to work well for him or her will also work for many others, leading to a significant advance in the field.

Then the next step is to find a patient for whom the new treatment does not work, and repeat the process, looking for another new treatment which works for a different component of the problem. Note that it is not necessary to identify the components ahead of time.

This idea may seem unusual in a treatment-research context, but it is well known in other fields as a bottom-up vs. top-down strategy. Both approaches have their advantages. Our view is that lipodystrophy research has not been successful because of an overemphasis on top-down thinking, which so far at least has not proved feasible in this area.


Nutrition, and Supplements

More attention is needed to reports that certain nutritional deficiencies may be associated with faster disease progression in some patients.

Such associations do not necessarily imply causality; the way to find out for sure if providing the nutrient would reduce progression would be to run a randomized trial. Clearly the large clinical-endpoint trials will seldom if ever be done for nutrients, for both economic and ethical reasons -- who would want to go into a trial where they would maintain a known deficiency in order to see if they get sick faster than a comparison group? But clinical trials could look at viral load, or other parameters which can change quickly.


Other Issues

  • Treatment in prison: The U.S. now has 2,000,000 people in prison, a huge increase during recent years, and a new study by the U.S. Centers for Disease Control and Prevention found an AIDS rate among prisoners six times that of the nation as a whole (23 times the national rate for women prisoners). The disproportionate rates among minorities are even worse in prison than in the general population.

  • U.S. drug pricing: Prices keep going up, reaching insupportable levels, and Congress is listening to elderly and other constituents who cannot obtain the treatment they need.

  • Treatment in developing countries: About 90% of people with HIV live in developing countries and have little or no access to modern treatment. 1999 was notable in bringing intellectual-property obstacles to public attention in developed countries; this issue will continue, but there are other major obstacles (and opportunities for progress) as well.

  • Risk of non-B HIV clades? The AIDS epidemic in the U.S., Europe, and some other areas is caused by a variant of HIV known as clade B; there are several other clades in different parts of the world. Some clades (for example clade C, which is now causing the world's largest epidemic in southern Africa) may be more heterosexually transmissible than others; no one knows for sure. This year may be an important time to review precautions against the spread of different viruses into areas where they are not already present.



Retroviruses Conference Report by Telephone Conference, February 2


The annual Retroviruses conference, which this year is January 30-February 2 in San Francisco, is one of the world's most important scientific meetings on AIDS; this year it will also include a session on hepatitis C (HCV) infection. Just after the conference ends, a telephone conference will bring together a panel of experts who will review some of the information presented, and answer questions submitted by the teleconference participants. The telephone meeting will occur Wednesday, February 2, 5:00 p.m. Pacific time (6:00 p.m. Mountain, 7:00 p.m. Central, 8:00 p.m. Eastern time).

The panelists for this teleconference are:

  • Stephen Becker, M.D., in private practice in San Francisco.

  • Karen Beckerman, M.D., Assistant Professor of Obstetrics, Gynecology and Reproductive Sciences, University of California San Francisco, and Director of the Bay Area Perinatal AIDS Center (BAPAC).

  • David Cooper, M.D., Professor of Medicine and Director, National Centre in HIV Epidemiology and Clinical Research, University of New South Wales, Sydney, Australia.

  • Steven Deeks, M.D., San Francisco General Hospital AIDS program.

  • Michael S. Saag, M.D. (moderator), Professor of Medicine, Division of Infectious Diseases, University of Alabama at Birmingham, and director of the AIDS Outpatient Clinic at the University of Alabama.

  • Ronald Baker, Ph.D., Editor-in-Chief, HIVandHepatitis.com.

To join the teleconference, you need to register in advance (first name only); call 1-800-880-5121 Monday through Friday, 9 a.m. to 5 p.m. Eastern time.

Anyone can hear the tape or read a transcript later (no need to register). The tape will be available starting 24 hours after the teleconference; call 1-888-207-2647, and use pass code 5371. An edited transcript will be available about 14 days later at http://www.HIVandHepatitis.com.

This teleconference is supported by an unrestricted educational grant from Roche Laboratories.



Lipodystrophy Report by Telephone Conference, Feb. 9


A one-hour telephone conference on "Metabolic Complications and Body Fat Changes in HIV Disease: An Update," will take place Wednesday, February 9, 5:00 p.m. Pacific time (6:00 p.m. Mountain, 7:00 p.m. Central, 8:00 p.m. Eastern time). This call will outline highlights from a one-day symposium sponsored by Bristol-Myers Squibb in San Francisco on January 28, and from the Retroviruses conference which follows. The teleconference is free, but advance registration is required.

Panelists on this call are:

  • Ronald Baker, Ph.D. (moderator), Editor-in-Chief, HIVandHepatitis.com.

  • David Cooper, M.D., Professor of Medicine and Director, National Centre in HIV Epidemiology and Clinical Research, University of New South Wales, Sydney, Australia.

  • Judith Currier, M.D., Adjunct Associate Professor of Medicine, UCLA Center for AIDS Research and Education.

  • Donald Kotler, M.D., Professor of Medicine, Columbia University College of Physicians and Surgeons.

To join the teleconference, you need to register in advance (first name only); call 1-800-880-5121 Monday through Friday, 9 a.m. to 5 p.m. Eastern time.

Anyone can hear the tape or read a transcript later (no need to register). The tape will be available starting 24 hours after the teleconference; call 1-888-207-2647, and use pass code 5381. An edited transcript will be available about 14 days later at http://www.HIVandHepatitis.com.

This teleconference is supported by an unrestricted educational grant from Bristol-Myers Squibb.



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Three Activist Meetings, San Francisco, Late January


At least three activist/community meetings are likely to occur at the occasion of people gathering in San Francisco for the Retroviruses conference (the 7th Conference on Retroviruses and Opportunistic Infections, January 30-February 2, 2000, at the San Francisco Marriott). Fortunately, you do not need to be registered for the Retroviruses conference to attend these meetings (registration for the Retroviruses conference is now closed, but the activist meetings are much less formal, and are located outside the restricted conference areas).

"An AIDS treatment advocacy community meeting has been scheduled to take place on January 29, 2000 in San Francisco (the day before the Retroviruses conference) to discuss: (1) Long term HIV effectiveness research: the science, methodology, feasibility and need for appropriate funding, and (2) Highlights (an overview) of the NIH/NIAID Division of AIDS (DAIDS) workshop on long-term clinical studies in HIV infection, which takes place January 12-13. The community meeting will be Saturday January 29, noon to 5:00 p.m. at the San Francisco Marriott, 55 Fourth St., San Francisco; the community meeting was organized by an ad hoc community steering committee formed at NATAF, the National AIDS Treatment Advocates Forum, December 11-14 in Miami. If you will be attending, please RSVP to Michael Marco (mikemarco@aol.com), the steering committee's logistics coordinator."

The other two meetings have not yet been officially scheduled:

  • At most major treatment conferences, activists gather for about an hour each afternoon, to share views on the important news of the day, and the most important presentations scheduled for the following day or later in the conference. Usually there is an initial meeting to set the time and place for the daily gatherings. This meeting has not yet been called. (A likely time is after the community meeting on January 29th, above.)

  • ACT UP/Paris, ACT UP/Philadelphia, ACT UP/New York, and other activists will likely meet on intellectual-property issues around access to pharmaceuticals in developing countries. No specific meeting time or place has yet been set.

There are many restaurants in the area suitable for small informal meetings, up to 15 or 20 people; they are unlikely to be crowded after lunch in the afternoon because they are set up to handle the larger crowds that come at night for entertainment, especially at the new Sony Metreon movie complex across the street from the Marriott hotel. At ICAAC in September, the daily activist meetings occurred outdoors at Yerba Buena Park, also across the street from the Marriott -- but January is in the rainy season in San Francisco, so the weather may not be suitable for meeting outdoors.

We expect to have more information in our January 21 issue.



Neuropathy: Practical Book on Mainstream, Alternative Options

by John S. James


Numb Toes and Aching Soles: Coping with Peripheral Neuropathy, by John A. Senneff, discusses dozens of different treatments which people are using for peripheral neuropathy, a poorly-understood condition causing loss of sensation, weakness, or pain, most often in the feet or hands. Millions of Americans have peripheral neuropathy; about half the cases are caused by diabetes. Many people with HIV also have peripheral neuropathy, either caused by the illness itself, or by some of the drugs used in its treatment. While Mr. Senneff's book is not specific to HIV, what has been learned about how to relieve neuropathy due to diabetes or other causes may be helpful for persons with HIV as well.

Some of the treatments discussed are:

  • Non-opioid pain medications: Elavil (amitriptyline), Norpramin (desipramine), Pamelor (nortriptyline), Tofranil (imipramine), Mexitil (mexiletine hydrochloride), Neurontin (gabapentin), Ultram (tramadol), Dilantin (phenytoin), Klonopin (clonazepan), Tegretol (carbamazepine), Catapres (clonidine), and Lioresal (baclofen).

  • Non-steroidal anti-inflammatory drugs including aspirin, acetaminophen, ibuprophen, and naproxen.

  • Topical medications: capsaicin (Zostrix, Zostrix H.P., Axsain, or Capsin); EMLA (lidocaine and prilocaine), and cream preparations containing non-steroidal anti-inflammatory drugs.

  • Opioid drugs: morphine, codeine, Dilaudid (hydromorphone), Demerol (meperidine), Dolophine (methadone), (Sublimaze (fentanyl), OxyContin (oxycodone), and MS Contin (morphine sulfate). The book includes a discussion of the problem of under-prescribing of narcotic pain medications because of fear of addiction, which research has found to be very unlikely when these drugs are used for relief of pain.

  • Miscellaneous drugs: Ketamine (including a topical form which can be prepared by a compounding pharmacy); immune-suppressive drugs; IVIG (intravenous immune globulin).

  • Other medical treatments: TENS (transcutaneous electrical nerve stimulation) gets several pages of discussion. (We believe that TENS deserves more attention because of its potentially low cost and simplicity.)

  • Other treatments including acupuncture, physical therapy, relaxation and meditation training, massage and similar therapies, and magnets.

  • Nutrients: including vitamins A, vitamins B1, B2, B3, B5, B6, and B12, biotin, folic acid, inositol, choline, vitamins C and E, and minerals (selenium, magnesium, chromium, zinc).

  • Herbs: ginkgo biloba, St. John's wort, bioflavonoids, and other herbal products.

  • Other supplements: alpha-lipoic acid, gamma linolenic acid, acetylcarnitine, n-acetylcysteine (NAC), glutamine, coenzyme Q10, SAMe (S-Adenosylmethionine), and DMSO.

There are also discussions of over a dozen experimental drugs, not listed in this review.

A chapter on Coping includes exercise, arranging for comfort during sleep, finding comfortable shoes, and miscellaneous hints on clothing and other items.


For More Information on Neuropathy

  • Numb Toes and Aching Soles can be purchased in paperback for $19.95 + $4 shipping and handling ($6 outside of the U.S.), from Medpress, 1-888-633-9898 or http://www.medpress.com (Priority shipping is available for $3 extra in the U.S., Canada, and Mexico, $7 extra in most other countries.)

  • The book includes several recommendations for more information, including two organizations, the Neuropathy Association (1-800-247-6968 or http://www.neuropathy.org), and the Neuropathy Trust, in the United Kingdom, http://www.neuropathy-trust.org).

  • We contacted John Senneff in January 2000 to ask about new developments. He suggested an article by Rick Mendosa, who interviewed neuropathy experts and published a summary, "Drugs for Diabetic Neuropathy," at http://www.mendosa.com/neurdrug.htm.



Acupuncture Detoxification Meeting, San Francisco, January 28 and 29


The National Acupuncture Detoxification Association (NADA) will hold its International Conference on Drug and Alcohol Addictions, January 28 and 29, at the Sheraton Hotel at Fisherman's Wharf, 2500 Mason St., San Francisco. This meeting is not HIV-specific, but it presents results with a credible and affordable protocol which has shown considerable success in keeping clients off of drug dependency. "The protocol includes acupuncture, individual counseling complemented by twelve-step programs, toxicology testing, and vocational training, and has a remarkable recovery rate, six times higher than traditional methods" (quoted from NADA press release).

For more information about the conference, call John Kolenda, 415-550-6779; for a list of NADA publications, see http://www.acupuncture.com/Acup/NadaPg2.htm (we could not reach NADA's home page at press time).



Disability Benefits: New Law Will Help Disabled Return to Work

by John S. James


An important new law will help disabled persons return to work without losing medical benefits, and correct some other disincentives to returning to work after being disabled. However, this complex law is not effective yet; different parts will be phased in over the next few years, and some provisions will depend on decisions by each state.

We asked benefits expert Tom McCormack of T2CANN (Title II Community AIDS National Network) to outline some of the provisions of this legislation, the Ticket to Work and Work Incentives Improvement Act of 1999 (a bipartisan law which was signed by President Clinton on December 17, 1999).

He noted that the most important changes will need approval by each state. But three which will apply to all states are:

  • Easing but not eliminating the risk of losing benefits due to being determined to be no longer disabled. For example, the fact that somebody is working will not be used as evidence that they are no longer disabled. (This provision becomes effective on January 1, 2002.)

  • For disabled persons who return to work from SSDI, Medicare Part A will be free for 99 months, vs. 45 months under current law. (This change becomes effective October 1, 2000.) [After the free period ends, still-disabled persons can continue their Medicare indefinitely, but must pay the $166 monthly Part A premiums themselves. If they cannot afford that, the welfare department's QWDI program can pay for them if they earn under $2832 monthly; welfare's SLIMB/QI program can also pay the $45.50 monthly Part B premiums (which come due after only 12 months back at work) for those earning under $1939. For an explanation of the unusual rules on how to use these programs, see "Keep Your Medicare in Force As You Go Back to Work -- What to Do and When to Do It" by Thomas P. McCormack, AIDS Treatment News #313, February 19, 1999.]

  • "Ticket to Work" vouchers will enable disabled persons to obtain vocational rehabilitation, job training, return-to-work counseling and benefits guidance from nonprofit organizations or businesses which meet certain requirements; these organizations will be paid for this service by the federal government. Previously, persons usually had to get these services from their state vocational rehabilitation department. (Service organizations can benefit from this new program and can subcontract out specialized job-training activities.)

A very important provision will require a decision to participate by each state. Alaska, California, Iowa, Massachusetts, Minnesota, Nebraska, Oregon, South Carolina, Vermont, and Wisconsin already give Medicaid to working, still-fully-disabled persons earning up to about $43,000, under the old law (all states could do so if they chose to). The new law will allow all states to cover them but also cover the formerly disabled (those who were disabled under Social Security, but then were ruled no longer disabled during a review -- but who are still likely to have special medical needs) and some but not all states can also cover the pre-disabled (those who have medical conditions which could later result in disability, such as those who are "only" HIV+). Also, the new law will allow states to have even higher income and asset levels for these programs.

[Note: Unfortunately the new law does not affect private disability insurance. With private insurance, it can be difficult to return to work without permanently losing disability insurance -- a serious problem if it turns out that one is unable to continue working. "Almost all cases involving private disability insurance must be individually pre-negotiated," according to McCormack, "building on whatever rudimentary provisions the policy might have on return-to-work and vocational rehabilitation issues -- to develop a workable work-return plan that includes protection for continued benefits, or the reinstatement of benefits, should the work effort collapse because of medical problems. This can only be done case-by-case for each individual by expert attorneys or other skilled benefits advocates, because policy provisions are so different."]

For more in-depth information, request a summary of the new law, an advocacy kit for getting your state to add Medicaid coverage of the disabled (including the "pre-disabled" and the "ex-disabled"), and a copy of "Returning to Work and Keeping Medicare and Medicaid" from Tom McCormack, send a message to tomxix@ix.netcom.com.

Also, attorneys and other benefits advocates can subscribe to a free non-profit email discussion group on benefits and other legal issues. To subscribe, send a message to HIV-Law-Approval@Web-Depot.COM; you will receive a brief questionnaire which must be returned for your subscription to be approved.



ISSN # 1052-4207

Copyright 2000 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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