Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol
  
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

AIDS Treatment News
June 7, 1996

Contents:

  1. Viral Load Approved; Free Test Offered to All in U.S. with HIV
  2. Viral Load: New Recommendations for Clinical Practice
  3. Viral Load: New Proof of Importance for Disease Staging and Prognosis
  4. Op Ed: Viral Load FDA Approval Delays
  5. PMPA: New Information
  6. 3TC: Glaxo Wellcome Broadens Patient Assistance
  7. Prison: California Conference on HIV and Prison Issues, Oakland, June 27
  8. AIDS Treatment News New Index Available
  9. Activist Communications, Activities at Vancouver Conference
  10. "Access for All": Communication Strategy Proposal for International Conference

Viral Load Approved; 
Free Test Offered 
to All in U.S. with HIV

by John S. James
On June 3 the FDA approved the Hoffmann-La Roche Amplicor HIV-1 Monitor(TM) viral load test, the first viral load test officially approved for clinical use in the United States. (The same test has already been marketed in Europe, and in some other countries, for over a year.) And Hoffmann-La Roche announced that it will offer two free baseline tests to everyone with HIV in the U.S. (regardless of finances, and regardless of what treatments they may have used or now be using), but only during a 60-day period starting June 17. Patients or physicians who want more information about this free testing program should call 888/TEST-PCR, a toll-free number.

It is recommended that two tests be used to establish a baseline. Because some illnesses and vaccinations can temporarily stimulate HIV (as much as 300 fold) and produce misleading viral load results, "HIV RNA levels should not be measured within a month of acute illnesses or within a month after influenza and pneumococcus immunizations," according to clinical practice recommendations published this month in NATURE MEDICINE (see Viral Load: New Recommendations for Clinical Practice," below).

The newly-approved test is based on PCR, one of three different methods for measuring viral load which have been widely used in research. (The other two methods are branched DNA, and NASBA; it is widely agreed that all three measure basically the same thing, although there can be variations in how sensitively the different methods detect a particular patient's viral subtypes. For this reason it is usually better for a patient to stay with one kind of test, not use the different tests interchangeably.)

Advertisement
In the U.S., viral load testing has already been available to physicians for about two years, but there have been disadvantages which appear now to have been overcome. PCR was available through "home-brew" tests (meaning that the laboratory which offered the service had to prepare its own reagents), and there have been questions about the quality control at some labs. In contrast, the approved PCR test is provided to the labs in a kit with the reagents strictly standardized, and now the quality control has been checked by the FDA. Also, viral load using branched-DNA technology has been and is available through Chiron Corporation, which recently applied for official FDA approval (the FDA has not acted on Chiron's application yet). The Chiron tests are reliable, but the version now available to physicians (outside of research) cannot measure viral load counts below 10,000 copies. (The newer second-generation branched-DNA test, used by researchers for about two years, can measure down to about 500 copies, and is basically equivalent to the Roche test just approved. An advantage of the Chiron test is that it has been carefully standardized to accurately measure the different subtypes of HIV found all over the world. Roche told us that its test already accurately measures the subtypes commonly found in the U.S., and that its second- generation test will include others as well.)

Comment

Exactly what indications viral load testing would be approved for -- important for reimbursement, and perhaps even more so for improving the prevailing standard of HIV care -- has been controversial. Everyone agrees that the three major kinds of viral load testing (PCR, branched-DNA, and NASBA) do measure what they claim to measure. Everyone agrees that viral load provides important information about prognosis, that persons with a high viral load are likely to do worse. The Roche test was easily approved for these purposes.

A month ago it looked like this was all the approval this viral load test would get -- which would have given insurance companies, HMOs, and other payers an excuse to reimburse for only two viral load tests (for the baseline) in a patient's lifetime, depriving many patients' doctors of the tools to get the most benefit from protease inhibitors and other new therapies. This almost happened because, for historical reasons, the test was reviewed by the FDA's Blood Products Advisory Committee, and by the Biologics division of the FDA, which are relatively unfamiliar with HIV -- and because Roche did a poor job of presenting its case for approval to that committee.

The controversial issue was whether to also recommend the test for monitoring patients, especially for determining whether an antiviral drug or regimen is having the intended antiviral effect in a particular patient. Everything now known about HIV and antivirals strongly supports this use. But the final evidence -- a body count proving that patients who are randomly assigned to have their physician not use viral load do worse than those randomly assigned to have their physician use it -- is not yet available (such trials are under way now). Activist pressure may have helped in getting the FDA to include a statement on clinical use, although hedged:

"The test has also been used as an aid in assessing viral response to antiretroviral treatment as measured by changes in plasma HIV-1 RNA levels. The clinical significance of changes in HIV RNA measurements has not been fully established although several large studies that will more fully determine the role of comparative HIV RNA measurements in patient management are now in progress. HIV-1 RNA levels as measured by PCR were used as one of the surrogate markers in the accelerated approval process for the protease inhibitor drugs Invirase(TM), Crixivan(R), and Norvir(R), and for the reverse transcriptase inhibitor drug Epivir(TM). The utility of plasma HIV-1 RNA in surrogate endpoint determinations has not been fully established."

THE NEW YORK TIMES covered the approval accurately on June 4, but most other media reporting has been superficial. The reason is clear; much of the background on this story was not conveyed in the FDA and Roche press releases. Even the TIMES noted the concern that Roche and other companies had not applied for approval much earlier than they did -- without mentioning that a major reason for this was the lack of clarity at the FDA (and in the professional community) about what evidence would be required for approval.

What You Can Do Now

We believe that everyone with HIV should get the two tests to establish a baseline; and for 60 days only (starting June 17), persons in the U.S. can get them free. (This is not charity from Roche; probably most physicians who have used viral load have used the Chiron test, and Roche clearly hopes that the free offer will get many of them to switch to its product. Roche is donating the test kits, and certain laboratories are donating their services, also clearly in the hope of future business. Patients or their HMOs, etc. will probably need to pay for the physician's office time and the blood draws.) For more information about this free test offer, call the Roche Amplicor(R) Access Program toll-free hotline, 888/TEST-PCR, between 8:30 a.m. and 5:00 p.m. Eastern time; patients can request an enrollment packet to be sent to their physician.

The same hotline will also help patients obtain reimbursement for the test after the 60-day free program.

Even if one does not plan to get further viral load testing, establishing a baseline is important because it helps with decisions about how aggressive to be with therapy, and it leaves open the option of getting tested later to see if one's viral load has changed.


Viral Load: New Recommendations 
for Clinical Practice

by John S. James
A panel of leading HIV clinicians and researchers has published interim recommendations for how to use viral load testing, based on currently available knowledge.(1) The recommendations, which appear in the June 1996 issue of NATURE MEDICINE, answer common questions of physicians and patients about when to use the test and what the numbers mean. The information is current; while the recommendations represent months of work by the authors, NATURE MEDICINE published them very rapidly, about one month after receiving the manuscript.

The article summarizes the recommendations in a table:

  • "Plasma HIV RNA level that suggests initiation of treatment: More than 5,000-10,000 copies/ml and a CD4+ count/clinical status suggestive of progression; [or] >30,000-50,000 regardless of laboratory/clinical status.
  • Target level of HIV RNA after initiation of treatment: Undetectable; Minimal decrease in HIV RNA indicative of antiviral activity: >0.5 log decrease.
  • Change in HIV RNA that suggests drug treatment failure: Return to (or within 0.3 to 0.5 log of) pretreatment value.
  • Suggested frequency of HIV RNA measurements: At baseline, 2 measurements, 2-4 weeks apart. Every 3 to 4 months or in conjunction with CD4+ counts. Shorter intervals as critical decision points are neared. 3-4 weeks after initiating/changing therapy."

(For those not familiar with logarithms, a 1.0 log change means a 10-fold change; a 0.5 log change is about 3-fold; and a 0.3-log change is 2-fold. So the third of the five points quoted above means that an antiviral treatment should decrease viral load to less than a third of its starting value, for the physician to be confident that the treatment is working. Less of a decrease might have been due to testing errors, or to normal daily fluctuations in viral load.)

The NATURE MEDICINE paper also reviewed the major published research on the relationship of viral load to HIV disease progression.

The team which prepared the recommendations was convened by the International AIDS Society U.S.A.

References

1. Saag MS, Holodniy M, Kuritzkes DR, O'Brien WA, Coombs R, Poscher ME, Jacobsen DM, Shaw GM, Richman DD, and Volberding PA. HIV viral load markers in clinical practice. NATURE MEDICINE; June 1996. Volume 2, number 6, pages 625-629.


Viral Load: New Proof of 
Importance for Disease Staging 
and Prognosis

by John S. James
Research findings published May 24(1,2) have extended earlier work showing the importance of viral load in predicting HIV disease outcome. Measurement of plasma HIV RNA (indicating the concentration of virus in the blood) was found to be a much more accurate predictor of later illness than CD4 (T- helper) count, strongly suggesting that patients and physicians should consider viral load when making HIV treatment decisions. This data provides longer followup than for any previous study of viral load.

The research team, mostly from the University of Pittsburgh but including two members from Chiron Corporation, looked at disease outcomes in a cohort of 180 HIV-positive gay or bisexual men who were enrolled between April 1984 and March 1985 in the Pittsburgh site of the MACS study (Multicenter AIDS Cohort Study). The 180 include all who were HIV-positive when they enrolled at the Pittsburgh site, and for whom frozen plasma samples were available for testing. It is not known how long the men were infected before they enrolled.

Only 41% of the 180 volunteers received antiretroviral treatment at any time during the study. [It is important to note that the average survival times today will almost certainly be longer than those reported below, which indicate survival starting ten years ago when much less treatment was available.] [Note: Brackets are used to indicate our comments about the article -- JSJ.]

The data were looked at in several different ways:

  • First, the researchers used viral load at entry into the study to divide the 180 volunteers into quartiles (four equal groups, of 45 each, with the highest, second-highest, second- lowest, and lowest viral load). They measured the viral load with a "second generation" bDNA test from Chiron Corporation; this test, not yet available commercially but only for research, can measure down to a cutoff of about 500 copies of HIV RNA per milliliter of plasma. (The bDNA test which has been available to practicing physicians until now has a cutoff of 10,000 copies, 20 times higher than the second- generation test.)

    Of those in the lowest viral quartile, which was 4530 copies per ml. or less, only 8% progressed to AIDS within five years. In the next quartile, 4531-13,020 copies, 26% progressed. In the second-highest quartile, 13,021 - 36,270 copies, the proportion was 49%; and in the highest quartile, above 36,270, 62% developed AIDS in five years -- almost eight times the progression rate of the lowest quartile. [These particular viral-load levels might be lower than those measured today, since these samples were processed 10 years ago with procedures not optimized to preserve them for viral load testing; it is likely that damage to the RNA led to lower counts being recorded, meaning that the numbers above are too pessimistic. One of the researchers told us that the samples in this study are likely to have suffered a 1.6-fold to 2-fold decrease in viral load counts due to how they were preserved -- meaning that the counts above may actually have been 1.6 to 2 times higher than the numbers given above.]

    Looking at survival, in the lowest quartile of viral load, 5% of the volunteers died within 5 years. For the next quartile it was 10%, the second-highest quartile 25%, and in the highest quartile, 49% died within 5 years.

    The increased risk of progression to AIDS, and risk of death, was still evident even ten years after this single viral load measurement.

  • Viral load was even more predictive when the average of the first two measurements was used, instead of a single viral load test (The MACS study drew blood samples every six months). And the predictive ability was further improved by eliminating the 29 patients (out of 172 for whom two tests were available) who had an 80% or more drop in number of copies between their first and second test. (This drop probably meant that those people were still recovering from their primary HIV infection, meaning that their viral-load tests may not have properly measured the "set point," or long-lasting, relatively stable viral level which remains after primary infection and seems to control the speed of disease progression.) Once these adjustments were made, those in the highest quartile (average viral load greater than 28,720, in this group) had a median survival time of only 2.5 years, with only about 5% surviving for ten years. The authors interpret this as "evidence that a persistently high viral load is almost always associated with more rapid disease progression."

    On the average, after statistical adjustments including both HIV RNA (viral load) and CD4 counts, the relative risk of death was 1.57 (a 57% increase) for each threefold increase in viral load.

  • CD4 counts were much less predictive of AIDS progression and survival. When the same volunteers were divided into quartiles by CD4 count (less than 322, 322-527, 528-787, and greater than 787) the three higher quartiles showed no difference in survival, nor in progression to AIDS. Only the lowest quartile showed a worse outcome. When the 29 volunteers with an 80% or more drop in viral load were excluded, the predictive ability of the CD4 test did not improve.

    In another look at CD4 count, the researchers found that 50% of those with CD4 over 500 [ten years ago], if they also had a viral load greater than 10,900, died within six years -- compared with only 5% of those with the same CD4 counts but a viral load of less than 10,900. They suggested re-evaluating the practice of using CD4 level as a trigger to begin antiretroviral therapy. [This does not affect the use of CD4 counts for starting prophylaxis for pneumocystis or other opportunistic conditions; in this situation, the CD4 level does show who is at risk.]

Comment

This long-term followup study shows the predictive value of modern viral load testing. But in order to have the long-term progression and survival information available, the researchers necessarily had to use frozen samples collected years ago. Therefore, the particular numbers reported above should not be blindly applied today. But the conclusion that viral load testing is important for patient management -- probably considerably more important than CD4 testing for guiding antiviral therapy -- seems hard to dispute.

Even before these results were published, there was clear consensus among experts that viral load testing is valid for prognosis (predicting whether an individual is likely to do well or poorly in the future). But there has been controversy about its use for patient management, with some saying that the data to support such use is not yet available. The problem is that to get conclusive proof of the value of viral load testing for management requires randomly assigning some patients to have their physicians use viral load testing as part of their care, and randomly assigning others to not use viral load, and then looking for a statistically significant difference in the number of deaths or AIDS complications in the two groups. Such trials are now being done, but they will take time, since existing frozen samples cannot be used (as there is no way to know what a physician in the past would have done with the additional information, or how a patient would have responded to the resulting change in treatment).

We have argued elsewhere that there are fundamental problems with this kind of trial to prove the value of viral load testing. Aside from the ethical concerns, it will be hard to reach statistical proof, since antiviral therapies are still limited, and many patients in the trials will not have good access even to what does exist (as these trials do not provide or pay for treatment); if physicians cannot make effective use of the viral load information, how much difference could it make? A negative result would not show that viral load is not useful, but only that it was not useful within the limitations of the particular (and largely undefined) guidelines and therapeutic options existing at the time of the trial. How helpful is this information, when the therapies and guidelines surely will have changed considerably by the time the trial results are available? And we do not see how these trials will have the statistical power to add much to our knowledge about HOW to use viral load, when they are designed primarily to answer the go/no-go decision of whether viral load should be used in individual patient care.

There is already so much information consistently supporting the importance of viral load, that it is inconceivable that this test could be found to have no use in clinical care. Viral load testing has already become a de facto standard for those who can afford it. The problem today is to get better care out to everyone else. This is especially important now that many more treatment choices are available. Viral load will be essential for making these choices intelligently -- for example, to find out when an antiviral regimen is failing to work for a particular patient, so that different treatments can be tried instead.

References

1. Mellors JW, Rinaldo CR, Gupta P, White RM, Todd JA, and Kingsley LA. Prognosis in HIV-1 infection predicted by the quantity of virus in plasma. SCIENCE May 24, 1996; volume 272, pages 1167-1190.

2. Ho, DD. Viral counts count in HIV infection. SCIENCE May 24, 1996; volume 272, pages 1124-1125.


Op Ed: Viral Load 
FDA Approval Delays

by David Scondras

[David Scondras served on the Boston City Council for ten years, from 1983 through 1993. He is co-founder of Search for a Cure, a Boston organization with a mission of cutting red tape, both government and corporate, which interferes with development of or access to effective treatment for HIV.]

We have good news and bad news; as this is going to press, the FDA has just approved the Roche viral load test for use by clinicians for HIV prognosis, and for monitoring the activity of antiviral therapies. The bad news is that it took much too long and were it not for the intervention of many treatment activists, the FDA's "Biologics Division" (Center for Biologics Evaluation and Research, CBER) very well might have made a bad decision. Delays in approvals harm those HIV positive individuals who have insurance, including Medicaid, that may not reimburse without FDA approval. And unfortunately there is a tendency for the Biologics Division to delay until they receive significant pressure from the activist community.

These problems are a direct result of the lack of experience of CBER in evaluating treatments for HIV illness, compared with the experience of the "Drugs Division", (Center for Drug Evaluation and Research, CDER). The speed with which CDER moved on protease inhibitors stands in stark contrast to the delays and need for extensive advocacy campaigns at CBER.

Another example of CBER's erratic, slow and inconsistent behavior surrounds the effort to get a "Treatment IND" for access to the Salk therapeutic vaccine. After nearly a year of delay, CBER gave the green light for a phase III trial for this vaccine. Many people signed up since it might help, apparently has no side effects, is cost free to HIV infected people, and has very few restrictions on the use of any other therapies. However, many people who cannot get into the trial want access, so activists met with the FDA; at that meeting CBER staff made a commitment to allow an expanded access program, including Treatment IND status (the simplest legal method for getting new treatments to persons with HIV who otherwise cannot get them) for people with a CD4 count greater than 300. But when the decision arrived, it was for an open-label protocol [collecting research data] which the company specifically had said it cannot afford to undertake along with the $60 million phase III trial. We are now faced with the task of trying to get CBER staff to keep their word. This struggle continues.

The time has come to call for an HIV-positive, community- chosen ombudsman who would have the power to appeal any decision made by the FDA divisions to Commissioner David Kessler, with the requirement that any such appeal result in a written decision by Dr. Kessler within a stated and reasonable time.

Meanwhile, as a practical matter, it is time to move decisions on HIV therapies and diagnostic tests from CBER to CDER, because at least the drug division has had ample experience with the intricacies and unique problems and needs of the HIV positive community, which is clearly lacking in the biologics division.


PMPA: New Information

by John S. James
PMPA, an antiviral being developed by Gilead Sciences but not yet tested in humans, came to widespread attention last November, when a study published in SCIENCE (November 17, 1995) showed that it could block SIV (simian immunodeficiency virus) infection in macaque monkeys even when given 24 hours after exposure; PMPA protected 100% of the monkeys tested, while AZT protected none (there were 10 monkeys in each group). Now another study, presented at the Ninth International Conference on Antiviral Research in Fukushima, Japan, found that PMPA reduced SIV in chronically infected macaques by more than two logs (99%), or past the limits of detection; the virus reappeared when the drug was stopped.(1) Also, a 10% PMPA jell protected all four monkeys from vaginal transmission, while both of two monkeys treated with the control jell without PMPA were infected,(2) suggesting the possibility of a means of preventing sexual transmission which could be controlled by women -- which would have great public-health importance. (SIV is similar to HIV; the virus is so close to HIV-2 that many believe that humans acquired HIV-2 by SIV infection from monkeys. No animal ancestor to HIV-1 is known.)

For both studies, the researchers are from Gilead, the University of Washington Regional Primate Research Center, and the National Institutes of Health. Chiron Corporation also participated in the treatment study.

Gilead Sciences plans to start human testing of PMPA in 1996.

References

1. Bischofberger N, Tsai CC, Follis KE, and others. Antiviral efficacy of PMPA in macaques chronically infected with SIV. Ninth International Conference on Antiviral Research, Fukushima, May 19-24, 1996.

2. Miller C, Rosenberg Z, and Bischofberger N. Use of topical PMPA to prevent vaginal transmission of SIV. Ninth International Conference on Antiviral Research, Fukushima, May 19-24, 1996.


3TC: Glaxo Wellcome 
Broadens Patient Assistance

On May 20 Glaxo Wellcome Inc. broadened its Patient Assistance Program for Epivir(TM) (3TC, lamivudine), to no longer deny the drug to patients who qualify for their state ADAP (AIDS Drug Assistance Program) in states which have not included the drug in their program. A large majority of states already cover the drug, but several still do not. (California included 3TC in its program on April 25). 3TC was approved for combination use with AZT in November 1995.

Almost all major pharmaceutical companies have patient assistance programs for at least some of their drugs, although these vary greatly from company to company. The programs cost the companies little, since patients who receive a drug would otherwise not be customers but would go without, as they have no way otherwise to buy or obtain it. And the companies benefit by avoiding the public relations fallout that would occur from many people being denied expensive but life-critical drugs, due to their economic circumstances.

Recently there has been a problem of some companies excluding any patient whose public or private health insurance or managed care plan has rejected coverage for their drug (and sometimes also those patients whose health coverage has not yet made a decision). The pharmaceutical companies want to be sure that they are not used as the provider of last resort, allowing other institutions to refuse to pay for drugs they would otherwise have to cover. The problem is that patients then become pawns in the battles between large organizations. (This was not a major problem until recently, because traditionally it was taken for granted that if the FDA approved a treatment, it would be covered by health plans.) The problem around ADAP has been particularly acute, because of the current funding crisis for that program, and also because it ostensibly covers everyone in the state within certain income limits who needs HIV treatment, resulting in more widespread exclusion than private insurance or managed care programs, which only cover their enrolled members.

Glaxo Wellcome noted in a May 15 letter that its program "was never intended or designed to serve as an alternative funding resource for inadequately funded state ADAP programs. Obviously this is a stop-gap approach to the immediate problem, and the need for a viable long-term solution grows in significance every day... This kind of solution is only going to take place as a result of collaborative efforts between government, community and industry."

Merck still has a similar policy of disqualifying patients from its patient assistance program for Crixivan(R) if they qualify for other programs which have rejected Crixivan coverage, although they will cover people up until the time a state formally rejects coverage. The Glaxo Wellcome policy was even more restrictive, excluding people until the state took a positive action allowing coverage.

Comment

While Glaxo Wellcome clearly deserves credit for this change in policy, people should know that Project Inform was a key community group that undertook the difficult negotiations without which the change would not have happened. Other groups, including ACT UP/Golden Gate, had earlier pressured the company to extend its expanded access program in some states, but the extension had run out and Glaxo Wellcome had still refused to change its basic policy of excluding people in states which failed to put 3TC in their ADAP formulary.

"This issue represents a growing economic tug of war between industry and government over who should be paying the bill for uninsured patients and others not adequately served by Medicaid," said Martin Delaney of Project Inform. "The total cost of HIV drugs is dramatically rising with the routine use of combination therapy, the approval of protease inhibitors, and the fact that some patients who had previously rejected the available drugs are now coming in for treatment."

With the new policy on 3TC, many people have access to treatment recommended by their physicians, when they did not before. But now community groups will need to work with industry to lobby state governments, and the Federal government, at least as effectively as they have lobbied companies.


Prison: California Conference on 
HIV and Prison Issues, 
Oakland, June 27

A statewide conference on AIDS in prison will be held all day June 27, in downtown Oakland. Five workshop tracks will focus on:
  • Education and prevention;
  • Transitional case management;
  • Vocational training & employment;
  • Advocacy & change;
  • Legal issues.

The conference is sponsored by many organizations, including AIDS Legal Referral Panel, HIV/AIDS in Prison Project of Catholic Charities East Bay, Marin AIDS Project, Service Employees International Union Local 970, Women's AIDS Network, and WORLD. It will take place 8:30 a.m. to 5:00 p.m. June 27 at Preservation Park, 13th Street and Martin Luther King Jr. Way, in downtown Oakland; cost is $40, scholarships are available. For registration and other information call 510/834-5657 ext. 3150, or 415/255-7036, ext. 313.


AIDS TREATMENT NEWS 
New Index Available

AIDS Treatment News has completely rewritten its index to recent issues, covering January 1994 through May 1996. (Earlier articles were already thoroughly indexed in our three published volumes of back issues.)

This new index, 24 pages in length, represents our current judgment about which articles today still contain important information on each topic. It uses an expanded format which includes part of the article title with each entry, so that readers can see if they might be interested before looking up the article. We are using the index in house, almost always preferring it to a computer search to find the articles we are looking for.

Following our subscriber benefits policy, we have already sent the new index to everyone who began a full-rate subscription ($100 per year individual rate or greater) since January 1995. Others can buy a copy for $10. Contact AIDS Treatment News, 800/TREAT-1-2 or 415/255-0588, or by fax at 415/255-4659.


Activist Communications, 
Activities at Vancouver Conference

AIDS activist organizations are planning demonstrations and other communication at the XI International Conference on AIDS, July 7-12 in Vancouver. There will be a nightly world activist meetings beginning July 6 (planned for 8 p.m. at The Robson Square Conference Center, underground below the Old Courthouse, Hornby & Robson Streets), possibly an informal meeting on July 5, and a march to the conference site on opening day, July 7. ACT UP chapters, including Golden Gate, New York, Paris, and Philadelphia, are sending people to the Conference; ACT UP/Golden Gate and ACT UP/Paris will have booths on site. There will also be an ACT UP press room, and probably a larger meeting room in addition. At least one activist phone number in Vancouver will have current information at all times.

For more information, contact Paul Davis, pdavis@critpath.org or Jennifer Depiero, jel@dolphin.upenn.edu, or call, fax, or mail either of them at ACT UP/Philadelphia, 215/731-1844, fax 215/731-1845, mail P.O. Box 15919, Middle City Station, Philadelphia PA 19103-0919.

Activists "want to be inclusive in our planning process of the diversity of issues across the planet; therefore we are asking individuals and groups to help us decide what kinds of actions should be focused on during the Vancouver conference." Likely issues already being discussed include drug pricing, forced HIV testing, failed government leadership, and finding international funding (including access to treatment) for people in developing countries.

AIDS activists and organizers in developing countries are particularly invited to submit information and ideas to: Kate Krauss, ACT UP Golden Gate, kate_krauss@out.org, 415/252- 9200, fax 415/252-9277; or Jennifer Depiero (addresses above).


"Access for All": 
Communication Strategy Proposal for 
Activists at International Conference

by John S. James
AIDS activists' communication to the public can be difficult. Because of the great diversity of issues people are working on, and because of the shallowness of most news media reporting, it is often hard for TV viewers and newspaper readers to understand where protesters are coming from, what our issues are. We need a theme or sound bite to communicate one central idea immediately, to the media and to other conference delegates as well, letting people know right away that we are on their side.

One possible theme is "Access for All" -- meaning access to medical care for HIV and AIDS (and other medical care as well), to information, to prevention programs, and to other services, for all the world's people. Almost everything we are now planning could fit gracefully under an Access banner:

  • High prices of protease inhibitors and other HIV/AIDS drugs. Exorbitant drug prices cause different problems in different countries (depending on whether there is national health care, for example), but are destructive everywhere. All price issues ultimately affect people's access to medical care.
  • Treatment access in developing countries. In past International Conferences, people from developing countries often sensed that U.S. activism pursued issues less important to them, while neglecting emergencies in their countries. "Access for All" means that we are going to address the problem of most of the world's people having no access to scientifically tested HIV treatments, being completely left out of all the fruits of biomedical research. One part of this problem, the lack of money for treatment in developing countries, is obvious.

Another root of this problem is the excessive focus of almost all mainstream clinical research toward high-priced, often inappropriate treatments. Is it possible that non-proprietary possibilities are not tested -- even with government or foundation money -- because proven treatments available at developing-country prices would also be used in rich countries, threatening key markets for high-priced drugs? Could activists help prevent genocide by raising this issue at Vancouver?

  • Research for a CURE. This issue cuts across economic lines, since no amount of money can buy a treatment that has not been discovered and developed. "All" includes those with money, as well as those without.
  • Funding issues. "Access for All" includes money issues such as protecting Medicaid and increasing ADAP funding (U.S.), finding more money for research, and funding treatment for developing countries.
  • Protecting medical research. "Access for All" includes making sure that necessary medical research is not stopped by animal-rights activists, who are now targeting AIDS in particular in order to get publicity. (This issue also cuts across economic lines, as there is no way to buy your way out of the consequences of damage to research.)
  • Prevention. "Access for All" can include prevention, including vaccines, the need for vaginal microbicides or other prevention methods under the control of women, professionally designed and targeted AIDS education unimpeded by politics, and needle exchange.
  • Information access. "Access for All" includes computer work (since computer communication is by far the most efficient and least expensive worldwide two-way information system). In addition, "Access for All" can challenge the widespread misbehavior of medical/technical journals, which often require that important work be kept secret in order to be effectively distributed. The registration fee of the International Conference could also be addressed -- the choice of such an expensive format -- and the refusal of the Conference to release abstracts in advance (as many other conferences do, greatly improving peoples' use of scarce time at the meetings). Also included with information access is misbehavior by the media, which has often run amuck at the International Conference by latching onto a catchy theme (such as the "deep kiss," or non-HIV AIDS, or excessive gloom and doom, from certain previous Conferences). Still another information issue is the need for translation of AIDS materials into different languages.

"Access for All" provides a unified public message to which many different issues and projects can relate. The above list is not complete, of course, but illustrates how we can take the diversity of AIDS activism and communicate it coherently to media audiences, and to Conference delegates. A major advantage of having a common theme is to help change the impression of disunity among AIDS activists. We can be working on many different problems and projects, but at the same time we are all working together.

Implementation: The first step is to agree on a common theme; "Access for All" is just one possibility. ("Access" may be too vague to communicate well. Other possibilities: "Treatment for All"; "Medical Care for All People"; ...) The agreed theme can be used in banners, signs, stickers, etc. Also, longer documents including fliers and press statements can relate this theme to the specific issues, problems, or opportunities being targeted. And when people speak to the media or address the Conference, they can relate their message to the common theme when appropriate.

We should choose a theme which will translate well, and prepare signs in many different languages, so that people will recognize their own language, and international reporters can find activists and other individuals from their country to interview. A march which includes the same sign in many languages sends a message of world activist unity, and is accessible to video and print media of many countries.

Ideally, the theme chosen should get final approval at the activist meeting the day before the conference (and perhaps also at the Community Forum). However, much of the material (signs, fliers for advance distribution, etc.) will have to be prepared in advance. The best approach might be to reach agreement soon, among those who can be contacted now. Then, in the unlikely event that the activist meeting in Vancouver decides on something different, it would be OK to have more than one theme at the Conference.

A powerful first step would be to seek agreement not only on a theme, but also on a consensus document suggesting examples of how that theme could be used. This article could serve as an early draft; feel free to circulate it to others who should be involved. Or we might decide on a different approach.

To facilitate preparation of signs and other materials, the consensus document should include translations of "Access for All" (or other theme we select) into many languages.




  
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

This article was provided by AIDS Treatment News. It is a part of the publication AIDS Treatment News.
 

Tools
 

Advertisement