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AIDS Treatment News
October 4, 1996

Contents:

  1. Grassroots Organizing by Internet: An Example
  2. CKR-5: New Study Confirms Some Do Not Get HIV
  3. Ritonavir and Saquinavir Combination: 12-Week Data at ICAAC
  4. Pharmaceutical Industry Sues to Stop Discount Pricing to Clinics
  5. Congress, Late September 1996: Funding, ADAP, Immigration
  6. 3TC Clinical Benefit: More Data Presented
  7. CMV Information: Print, Online, Phone, Video
  8. Viral Load Seminars for Physicians: Late October Dates in U.S. Cities
  9. Viral Load Overview Available from Treatment Action Group
  10. Washington, October 7: Promoting Treatment and Care in Developing Countries
  11. Benefits: San Francisco Training, November 1

Grassroots Organizing  by Internet: 
An Example

by John S. James
At the Harm Reduction Conference last month in Oakland, California (see AIDS TREATMENT NEWS #253, August 23, 1996), we learned about a grassroots organizing project which could be a model for AIDS advocacy. No one to our knowledge is doing similar work in AIDS, and we believe that many organizations could use this approach to increase their effectiveness at little financial cost.

This organizing project is called MAP (Media Awareness Project); its focus is drug policy reform. It is working with other organizations to encourage discussion of alternatives to the current war-on-drugs approach. Its members do not necessarily believe in legalization, but want to end the current drug war with its massive violence, corruption, misuse of resources, and disrespect for law, with hundreds of thousands of people in prison for nonviolent drug crimes, and no end in sight after 82 years (since the first U.S. drug-prohibition law in 1914). The major issue which the drug-policy reform movement shares with the AIDS community is medical marijuana. This article, however, looks not at issues but at organizing techniques.

MAP focuses primarily on using the Internet to support people in responding to media coverage by writing letters to the editors of newspapers. Although MAP is just a few months old and has only one staff person, dozens of its letters have been published, many in major national publications. (Often a letter which can be sent in an hour will appear in a paper where an advertisement of the same size would cost thousands of dollars; the free letter will have more influence, since the letters section is one of the most widely read parts of a newspaper.) MAP members and supporters are also encouraged to contact politicians and public officials.

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MAP differs from most such efforts by providing much greater support to its members. Computer communication allows it to do this economically. For example:
  • Anyone can learn about this project through MAP's Web site, http://drcnet.org/map/ . This site includes dozens of published letters which people can use as examples. It also describes other services of MAP, and tells how to use them.

  • MAP tells people how to compose letters so that they are most likely to be accepted. Getting published is easier than many people realize. Many newspapers with 30,000 to 50,000 circulation get so few letters that they publish almost all they receive, provided that the letter responds to something which appeared recently in the paper, and/or has human interest due to the reader's own personal experience.

  • MAP has an editorial board of professional writers and editors, who will help members who want assistance in improving their letters before they are sent.

  • MAP's "NewsHawk" members alert MAP to media coverage of its issues, pro or con. In addition, MAP uses a professional research database to search hundreds of major newspapers throughout the U.S. every day for relevant articles (although it may miss local stories the NewsHawks can pick up). MAP then notifies its "rapid response" members, who respond on issues that matter to them.

  • MAP maintains a database of 26,000 U.S. publications and public officials, so that letters can be sent to specific editors or officials when appropriate, and can be targeted to the requirements of a particular publication. MAP uses this database to improve the action alerts which it sends to its rapid-response members.

  • MAP refers members, reporters, and others to a major online library of authoritative drug information (http://druglibrary.org).

  • MAP also refers members to email discussion lists, where they can participate with experts in discussing various aspects of drug policy.

  • Members can be anonymous, with their names not appearing in membership lists. (Anyone could accomplish much the same by using MAP's services without joining.) Confidentiality can be meaningful even in an organization dedicated to getting letters published, since people can pick the issues they are comfortable with. (For example, if someone does not want neighbors to know they are interested in AIDS, they could still call for increased funding for medical research in general. Organizations should provide such options, to increase participation.)

  • Members report back what they do (often just by sending MAP a copy of their email). This allows evaluation of the organization's effectiveness, issue by issue.

  • Behind all this is an advisory board, mostly composed of leaders of other drug-policy organizations. This board gives policy coherence to the overall effort, and avoids factionalism by focusing on those issues where almost everyone in the movement can agree.

Because it is based on email, MAP's communication is almost instantaneous and essentially free. And since newspapers often prefer to receive letters to the editor by email (which avoids retyping), members do not have to switch media when they respond. Members who take the time to follow the issue and act can be published in newspapers across the nation, not only in their own locality; even those who are homebound can have great influence. Activists can be equally effective no matter where they live -- from a big city to a small village to a remote cabin -- as long as they can make an occasional telephone call to exchange email. This greatly increases the pool of potential activists.

MAP's excellent coordination, preparation, and support, combined with the advantages of email, mean that this organization with a staff of one can deliver many letters quickly anywhere in the country when a publication misreports the drug issue -- or when it reports the issues correctly and needs support and thanks.

[For more information about MAP, contact Mark Greer, 73164.760@compuserve.com, or by phone at 800/266-5759. Or visit its Web site at http://drcnet.org/map/.]


CKR-5: New Study Confirms 
Some Do Not Get HIV

by John S. James
A major genetic study of six epidemiological cohorts of persons at risk for HIV infection has confirmed the recent findings that a few people appear to be naturally unable to be infected with HIV (see AIDS Treatment News #254, September 6, 1996). Everyone found so far who has two copies of a defective CKR-5 gene (also called CCR-5) has been HIV negative, although these people have been in groups at high risk of HIV exposure. (The gene is considered "defective" because a section of it is missing, and it cannot produce a functional receptor which is found on certain cells. In this case, having a defective gene is an advantage, since some kinds of HIV need that receptor (in addition to the CD4 receptor) in order to enter a cell. No known harm results from this defective gene, even for those who have both of their copies defective and therefore cannot produce the normal receptor at all.)

The new results differ in some ways from what had been reported earlier:
  • Having only one copy of the defective gene did not seem to offer any protection against acquiring HIV, as had been suggested previously. But it was associated with a somewhat slower disease progression -- except in hemophiliacs. [This might be because of the different way HIV is transmitted. The virus which uses the CKR-5 receptor infects macrophage-like cells which are found in the skin and mucus membranes. It appears than when HIV is transmitted sexually, the infection first establishes itself as macrophage-trophic virus (strains of HIV which preferentially infect macrophages), and T-cell-tropic virus strains evolves later. Possibly the first step can be bypassed if a large amount of virus is transmitted by transfusion of blood or blood products.]

  • African Americans were tested, and a few were found to have the CKR-5 gene -- but many times fewer than Caucasians. An earlier study of Central and West Africans had found no copies at all.

Comment: Stem Cell Transplantation Research

What interests us most about this discovery is a possible treatment approach mentioned briefly in the new paper -- transplantation of stem cells from a person who had the protective genes. Stem cells are self renewing, and also produce all of the different kinds of cells found in the blood. If stem cells with two copies of the altered CKR-5 gene could be transplanted successfully, they would produce blood cells naturally immune to infection by many (but not all) kinds of HIV. While HIV can infect some non-blood cells, the great bulk of infection is in lymphocytes and macrophages, and if they were protected, the disease might not be able to sustain itself.

Possibly this approach could also repair immune damage caused by loss of part of the repertoire of immune cells in advanced HIV infection. It might also be a treatment for genetic blood diseases such as hemophilia.

Unfortunately the altered CKR-5 gene mainly protects macrophages, not lymphocytes. Other studies suggest that there may be additional forms of resistance to HIV, which may not have this limitation. But the immediate problem is that stem-cell transplantation from one person to another is in its infancy. It is a topic of intense research interest today.

In the past, efforts have been made to genetically engineer human cells to make them immune or resistant to HIV infection -- or alternatively to use cells from a baboon, since baboons are not infectable with HIV. While both of these approaches are worth trying, each has practical problems that now might be bypassed, since persons with stem cells which already are naturally HIV-resistant can now be readily identified. (Since they are always HIV-negative, there would be no risk of transmitting different strains of the virus to a recipient.) Transplantation of HIV-resistant stem cells -- which conceivably could lead to a cure even without total viral eradication -- may be less distant now that a clear case of genetic resistance to HIV infection has been confirmed.

The community needs to pay attention to stem-cell transplantation research (which is highly promising for many serious illnesses, not only HIV infection) and make sure that funding and other support are available.


Ritonavir and Saquinavir Combination: 
12-Week Data at ICAAC

by John S. James
A multi-center study of combination treatment with two protease inhibitors is continuing to produce encouraging results(!). This ongoing clinical trial had earlier reported six-week data from two of its four dosage arms (in July 1996 at the International Conference on AIDS in Vancouver); now it reported 12-week data from those arms, plus 6-week data from two higher dosage arms, on September 16 at the ICAAC conference in New Orleans. At this time median viral load reductions or CD4 count increases from the different doses cannot be distinguished statistically; however, one of the higher doses seems to be causing most of the dropouts.

The side effects seen so far have been those which would be expected from ritonavir alone. But the viral load reductions have been greater than would be expected from either drug by itself.

The two are being studied in combination because ritonavir increases blood levels of saquinavir, which are believed to be too low with the standard dose of that drug -- and also because these protease inhibitors have somewhat different patterns of development of viral resistance, suggesting that it may be more difficult for HIV to become resistant to both of them simultaneously than to one of the drugs alone. Also, each drug alone has shown benefit in clinical trials.

The 12-week data reported here were presented by Cal Cohen, M.D., of the Community Research Initiative of New England, one of the sites running the trial, which is funded jointly by Abbott Laboratories and Hoffmann-La Roche.

The Study Design

Volunteers had to have a CD4 count between 100 and 500, and no previous exposure to protease inhibitors. For this study, they had to discontinue other antiretrovirals two weeks before beginning the protease inhibitor combination.

For safety, lower doses were tested first. A total of 71 volunteers were randomly assigned 400 mg of ritonavir (Norvir(TM)) plus 400 mg of saquinavir (Invirase(TM)) twice daily (dosage arm 1A), or 600 mg of ritonavir plus 400 mg of saquinavir twice daily (dosage arm 1B).

Later, when no safety problems were found, the higher dosage arms were started. Both these arms gave the same total daily dose; the difference was whether it was given twice a day or three times a day. 65 volunteers were randomly assigned to receive either 400 mg of ritonavir plus 400 mg of saquinavir three times a day (dosage arm 2A), vs. 600 mg of ritonavir plus 600 mg of saquinavir twice a day (dosage arm 2B). To reduce side effects, there was a dosage ramp-up period.

Note: Due to a typographical error, the published abstract lists the 400 mg three times daily dose as 400 mg bid (twice daily).

Results

Most of the discontinuations were in arm 2A, the high-dose group receiving 400 mg of both drugs three times a day. The numbers who discontinued were 1 in arm 1A, 3 in arm 1B, 8 in arm 2A, and 0 in arm 2B.

The 12-week viral load reduction for groups 1A and 1B together was a median of 2.97 logs (99.9%), and the median CD4 increase was 95; the two groups were similar. A total of 53 volunteers had completed 12 weeks of treatment. This compares to a viral load reduction of 2.4 logs (99.6%) for the same treatment groups at six weeks.

The high-dose groups had 39 volunteers completing six weeks; their median viral load decrease was 2.14 logs (99.3%), and the median CD4 increase was 75. Remember that this is six-week data, compared to 12-week data from the low-dose groups above.

Another way of looking at the viral load is to ask what percentage of volunteers have viral loads which go below the limit of detection of the test (200 copies, in this trial). The proportion who reached this definition of successful treatment continued to increase during the first 12 weeks of the trial, and was about 75% at week 12. With the high-dose groups, the proportions reaching undetectable viral load were smaller -- but here only six-week results were available, and also those who had to discontinue the treatment (highest in the 2A dosage arm) were counted, and of course they failed to reach undetectable viral load.

Comment

It is possible that this combination might work even better if combined with one or two nucleoside analogs (e.g. AZT plus 3TC) -- provided that the regimen is tolerable. The main reason for combining different classes of drugs is to reduce viral replication as much as possible, to minimize the opportunity for the virus to develop mutants which are resistant to the drug.

During the question period after the ICAAC talk, Dr. Cohen suggested that for some patients who are resistant to all the available nucleosides, this protease inhibitor combination may be the best treatment option.

The most important question now is how long this combination will be successful. We will learn more as the trial continues.

References

  1. 1. Cohen C, Sun E, Cameron W, McMahon D, Farthing C, Poretz D, Markowitz M, Follansbee S, Mellors J, Ho D, Hsu A, Maki R, Salgo M, and Leonard J. Ritonavir-Saquinavir Combination Treatment in HIV-Infected Patients. 36 Interscience Conference on Antimicrobial Agents and Chemotherapy, New Orleans, September 15-18, 1996 [abstract #LB7B].


Pharmaceutical Industry Sues to 
Stop Discount Pricing to Clinics

by John S. James
PhRMA (the Pharmaceutical Research and Manufacturers of America), a trade association of the largest drug companies, filed suit in July 1996 to stop the government from requiring pharmaceutical companies to provide discounts to thousands of public medical clinics, ADAP programs, and other government-supported medical programs for the poor. Discounts to Medicaid, and to programs large enough to have their own pharmacies, apparently would not be affected by this lawsuit.

Supporters of the clinics believe the suit is without merit. The Public Hospital Pharmacy Coalition (phone 202/624-7346), along with community health centers and other representatives of facilities that receive the discounts, is preparing to file a friend-of-the-court brief against the PhRMA suit.

Background

This dispute concerns a law (Section 340B of the Public Health Service Act), passed by Congress in 1992, which requires pharmaceutical companies to offer deep discounts to certain government entities, as a condition for Medicaid buying the company's drugs. The prices under this program are, on average, about 40% below "average wholesale price," or about 20% lower than prices paid by group purchasing organizations. The PhRMA lawsuit is not trying to overturn this law itself; instead, it is trying to stop the government-funded facilities and clinics from contracting with outside pharmacies to dispense the drugs. This would greatly limit the deep-discount program, since many of the clinics are too small to have their own pharmacies. They would not be able to send their patients to have their prescriptions filled at a discount by pharmacies elsewhere, greatly increasing the financial burden of providing healthcare for the poor and uninsured.

At this time only about a dozen of the state ADAPs (AIDS Drug Assistance Programs) use the discount pricing. This is because most ADAPs do not operate their own pharmacies capable of buying the drugs at the discounted rates. However, many of the non-participating ADAPs could join the 340B program by taking advantage of the contract pharmacy model. The PhRMA lawsuit, if successful, would eliminate this option, preventing most ADAPs from stretching their dollars farther in paying for AIDS drugs.

PhRMA complains that guidelines on contracting with pharmacies was not published in the Federal Register, as it claims the law requires, but instead were released on a government computer system set up to dispense information about the Section 340B program. PhRMA also claims that companies cannot adequately protect themselves from diversion of low-price drugs to non-covered patients. The Public Hospital Pharmacy Coalition says that the companies and the government both have the right to audit the records of the organizations using the program, and that no documented instances of intentional diversion have occurred. The PHPC also believes that the government followed the proper procedures in developing and publishing the guidelines.

PhRMA also argues that companies would be violating state laws if they sold prescription drugs or controlled substances to clinics which are not pharmacies -- and that if the sale were considered to be to the pharmacy with which a clinic had contracted, then there is no provision in Section 340B for such a sale. In response, PHPC points out that the 340B statute is silent on the issue of contract pharmacies, and that, under state laws, such arrangements are permissible.

Comment

This PhRMA lawsuit is one of the thousands of private and public efforts now underway to increasingly abandon responsibility to the poor and the sick, exacerbating the

damage from the growing disparity of wealth. Unless the public organizes to defend itself, more and more people will have no viable place in the future.

As we announced in our last issue, on October 11 a major demonstration sponsored by several AIDS organizations will target PhRMA over drug pricing; for more information call 215/731-1844, or email pdavis@critpath.org.

Our own view is that for long-range strategy, drug pricing should not be an AIDS-specific issue, but rather a coalition issue involving the many publics and organizations affected. Also, we believe that the best strategic goal may not always be to reduce prices overall, but rather to make sure that those who need medical care are not denied it. For example, even a large reduction in the prices of protease inhibitors would not make them affordable out of pocket for most people; therefore, it might be better to focus on effective government, private, and other patient assistance programs, on enabling those currently uninsured to obtain access to medical coverage, and on facilitating the testing of nutritional, herbal, and other nonproprietary low-cost treatment options, which today are unlikely to be studied in scientific trials either before or after they have become widely used.


Congress, Late Sept. 1996: 
Funding, ADAP, Immigration

by John S. James
  • AIDS funding success. Funding for AIDS services has done better than expected in Congress, which has just approved $100 million more than President Clinton's request for the fiscal 1997 (which begins October 1,1996).

    Much of the credit for this success goes to the AIDS lobbying and political organizations, and to those who have supported them with their contributions, their calls and letters to Congress and the media, and their votes. What made a funding increase possible was the continuing concern of the public; a WASHINGTON POST poll released last month showed that AIDS ranked #2 in public concern, tied with crime and slightly behind education, despite the relative silence of politicians about AIDS. Also, on many issues the Republican Congress decided to give Clinton what he requested this year, instead of shutting down the government again, for which the Republicans received much of the blame last year.

    AIDS funding got more than Clinton requested because of a bipartisan effort by Congresswoman Nancy Pelosi (Democrat, San Francisco) and Congressman John Porter (Republican,Wilmette, Illinois) to add $100 million for ADAP (the AIDS Drug Assistance Program, part of Title II of the Ryan White CARE Act) -- later changed to $50 million to ADAP and $50 million to other AIDS programs (see below). ADAP is facing a major emergency due to the advent of protease inhibitors, more use of combination therapy, and more people seeking treatment due to greater hope. A conservative estimate is that $195 million more in Federal contributions is needed to prevent widespread denial of treatment. A $65 million increase was requested by Clinton and previously accepted by Congress, and the $100 million would have added most of the difference.

  • ADAP Funding Controversy. A few days before Congress adjourned, one group of AIDS organizations mounted a major lobbying drive without telling its coalition partners, and got half of the hundred million dollars for new ADAP funding for AIDS drugs redirected to other AIDS services of the Ryan White CARE Act. The long-running dispute between advocates for different titles within Ryan White became bitter.

    We do not have our own opinion about where the money would do the most good. We share the widespread concern about lack of cooperation among AIDS organizations -- and about the risk that the money could have been lost entirely because of the last-minute maneuver, and that future credibility and negotiating strength of AIDS advocates could be damaged.

    ADAP advocates built their case for funding by careful analysis and documentation of the merits. Admittedly it is harder to sell services than drugs in Congress, regardless of need, because ADAP funding is strongly supported by the pharmaceutical industry and the AIDS community working together on this particular issue. In politics, money and moral authority are synergistic (more powerful together than would be expected by adding their separate strengths). Some activists want to do what is possible, given the system we have; others fear accepting the view that Congress cannot allocate resources rationally among AIDS programs, when some programs have big-money backers and others do not.

    The bottom line is that we need better coordination to build unity among different AIDS organizations -- and to maintain public confidence that actions reflect the interests of constituents over those of professionals and insiders.

  • Immigration and the politics of hate. Last week the U.S. came very close to having a new Federal law singling out HIV by prohibiting Federally funded medical programs from providing HIV/AIDS treatment to immigrants, including legal immigrants.

    Congress never had a chance to consider this provision in any normal way. What happened is that both the Senate and the House passed different versions of an anti-immigrant bill, neither of which involved HIV. These bills went to a Conference Committee to compromise the differences. The provision against HIV treatment was added in that Committee by a person or persons unknown, and Committee members were not allowed to introduce any amendment to delete the change. The bill with the anti-treatment provision then passed the House on September 25 by a vote of 305-123 (no amendments are allowed at that stage) and was set to pass the Senate, again with no opportunity for negotiation -- and with President Clinton leaning toward signing the legislation despite objecting to many provisions, especially those targeting legal immigrants. But because of the many problems in the bill, the Senate did not vote, but instead attached much of the legislation to an unrelated budget bill. This allowed negotiation of the immigration provisions, and on September 28 the ban on HIV treatment was killed.

    What this incident shows is that the U.S. can make a significant legal change in days -- this immigration provision would have created a Federal precedent for second-class status for persons with HIV -- with no opportunity whatever for consideration, debate, or negotiation. This is done by back-room manipulation to attach "technical" changes to bills with great momentum, which are likely to pass and be signed into law no matter what. Those who object must then create a national campaign for new legislation to get the provision repealed -- or find an opportunity for another legislative trick. We saw this before with the Internet censorship legislation, now tied up in litigation, which technically bans abortion information from the Internet, a provision Congress discovered only one day before its final vote (see AIDS TREATMENT NEWS #249, #240, and previous
    issues).

    The growing propensity of Congress to move hate legislation and other giveaways to special interests through the back door -- a scheme can advance within days from first being hatched to becoming the law of the land, with no discussion of its merits -- means that the public must be more vigilant than ever to protect itself. That is why it is important now to use email and the Internet as a communication backbone for rapid mobilizing; see "Grassroots Organizing by Internet: An Example" in this issue. The AIDS community was completely united on the immigration provision and mobilized immediately, helping to defeat the treatment ban.


3TC Clinical Benefit: 
More Data Presented

by John S. James
In June a major international trial of 3TC was stopped early, after a preliminary analysis showed that adding this antiretroviral to certain other antiretroviral treatments (based mainly on AZT) cut disease progression and death in half (see "3TC: Combination Trial Stopped Early As Clinical Benefit Shown," AIDS Treatment News #252). More information was released at the September 15-18 ICAAC conference in New Orleans, in the presentation by Julio Montaner, M.D., of the Canadian Clinical Trials Network.

This study is called CAESAR (an acronym for Canada, Australia, Europe, and South Africa, the regions where it has taken place); it is less well known in the U.S., since there were no sites here. 1800 patients with CD4 between 25 and 250 were enrolled in this trial, which was sponsored by Glaxo-Wellcome and also by Janssen. The trial participants (who were 90% male, average age 36) were all receiving either AZT or AZT+ddI or AZT+ddC, and were randomly assigned to add to that treatment either: placebo, 25% chance; 3TC alone, 50% chance; or 3TC+loviride, 25% chance. (Loviride is an experimental non-nucleoside reverse transcriptase inhibitor being developed in Europe. Its previous name was alpha-APA; AIDS Treatment News reported on its early development in September 1992 and March 1993.) After the 52 weeks of the trial, participants were offered open-label 3TC+loviride. The study was stopped early because it was almost finished, and it was clear that nothing that happened subsequently could have changed the result.

The rate of disease progression (to new AIDS-defining condition, or death) was 17% in the group randomly assigned to placebo (in addition to the AZT-based treatment), 9% in the group which added 3TC alone, and 8% in the group which added 3TC+loviride; for all patients, diagnosis of AIDS-defining conditions was confirmed by a review of the medical records, by experts who did not know which drugs the patient was receiving. Death rates in the trial were 4.6% placebo, 2.4% 3TC alone, and 2.7% 3TC+loviride. Overall, adding 3TC to these AZT-based treatments led to a 54% reduction in the relative risk of disease progression or death, and a 53% reduction in the risk of death.

The use of loviride in this combination did not appear to add any additional benefit. (It should be noted, however, that this study was not designed to look for a clinical benefit of loviride, and that this drug might still be valuable in other combinations. In the early history of 3TC, that drug too appeared to be minimally useful, and we are lucky that it was not abandoned before its value in combination with AZT was discovered.)

The CAESAR study found no additional toxicity from adding 3TC to the other treatments. (But physicians need to be aware of side effects seen in other trials, especially pancreatitis in pediatric patients.)

Some of the trial participants were antiretroviral-naive, and started their AZT-based treatment when they entered CAESAR. Their data will be analyzed separately.


CMV Information: 
Print, Online, Phone, Video

Persons with a CD4 count of under 100 (or others regardless of CD4 count who have had a previous opportunistic infection) are at risk for CMV and should discuss prevention with their doctor. CMV (cytomegalovirus) infection usually first affects the retina of one eye; it can also occur in other organs, including the colon, esophagus, or central nervous system. A majority of all adults in the U.S. are infected with CMV, but the virus seldom causes illness except in persons with a severe immune deficiency. If illness occurs, treatment must be started immediately to prevent permanent vision loss or other serious complications. There are now a number of treatment options for CMV, plus approved preventive treatment for persons at high risk.

"Partnership in Vision" CMV Retinitis Report

Partnership in Vision is "a collaboration dedicated to providing information and education to enhance the quality of life of people affected by CMV retinitis and other visual complications of AIDS." It is chaired by Clyde Crumpacker, M.D., of Harvard Medical School and Beth Israel Hospital, and funded by an unrestricted educational grant from Gilead Sciences, Inc.

Partnership in Vision, started only a month ago, has published CMV Retinitis Report, an authoritative 9-page overview of CMV treatment and prevention information presented at the XI International Conference on AIDS, July 1996 in Vancouver. To obtain a copy without charge, call 800/981-9402.

"CMV Prophylaxis and Intraocular Therapy"
New CME Course Online

"CMV Prophylaxis and Intraocular Therapy," a new one-hour continuing medical education course available on the World Wide Web, focuses on newly approved uses of ganciclovir -- both orally for prevention of CMV, and also as an eye implant for treatment. Development of this training material was supported by an unrestricted educational grant from Roche Laboratories.

Anyone can take the course; continuing education credit is available for physicians, nurses, and pharmacists. More information, and the course itself, can be found at http://www.immunet.org . User support is available from Immunet at 213-656-6636, or by email at cmehelp@immunet.org.

Notes:

  1. Credits: CMV Prophylaxis and Intraocular Therapy was written by Baruch D. Kuppermann, M.D., Ph.D., assistant professor and acting chair of the Department of Ophthalmology at the University of California Irvine College of Medicine. Materials for the online course were developed by Healthcare Communications Group, LLC, and peer-reviewed by the Clinical Care Options for HIV National Advisory Board.

    The same course is also available at other sites, but we find the Immunet one easiest to use.

  2. New CMV and other discussion email lists: Last week Immunet introduced four unmoderated forums for discussion of AIDS medical topics through email. The four so far are CMV Disease, Antiretroviral Therapy, Women and HIV, and Wasting Syndrome. Issues to be discussed include standards of care, therapeutic options, case studies, and new developments. These discussion forums are open to anyone. You can sign up by following the instructions at http://www.immunet.org .

  3. Disclosure: Immunet is also hosting the two AIDSTREATMENT NEWS Web sites: our archival back-issue site at http://www.immunet.org/atn , and our directory of AIDS sites on the World Wide Web, http://www.aidsnews.org .

CMV Prevention, Treatment Information English/Spanish Hotline

The National Association of People with AIDS (NAPWA) has extended its CMV information hotline.

NAPWA started its hotline service in 1996, and in the first six months answered questions from more than 1,000 persons living with HIV and healthcare professionals. The hotline is funded in part by an educational grant from Hoffmann-La Roche, and the recorded message refers callers to Roche for additional information, but not to competing pharmaceutical companies which make other treatments. (Referrals to Chiron and Gilead Sciences are made when necessary by the hotline staff.)

To reach the hotline, call 800/838-9990. Trained staff persons are available to answer questions in English and Spanish between 9:00 a.m. and 9:00 p.m. Eastern time; free literature can also be requested. In addition, a short recorded message about CMV, in English and in Spanish, is available 24 hours a day.

Cidofovir: Information on New CMV Treatment

Cidofovir for injection (Vistide(R)) is a new drug approved for marketing by the FDA for CMV treatment on June 26, 1996. Its main advantage for patients is that it is infused only once every two weeks (after two infusions one week apart for induction treatment), avoiding the need for an implanted catheter. Its major danger is kidney toxicity, which can be minimized by use of another drug (probenecid), plus intravenous hydration, on the day of each infusion. The wholesale price of cidofovir is over $1000 per month; a patient assistance program is available. [Note: AIDS Treatment News reported as far back as 1989 on the early development of this drug, which was then named HPMPC.]

Cidofovir is being marketed by its developer, Gilead Sciences, Inc. within the United States, and by a marketing collaboration of Gilead with Pharmacia & Upjohn in other countries. Cidofovir is currently being reviewed by the European Community's Committee for Proprietary Medicinal Products.

For more information about cidofovir patient selection, proper administration, and patient monitoring, or about reimbursement assistance, physicians and patients within the United States can call 800/GILEAD-5.

CMV Screening Videotapes Available

  • Since October 1995 Hoffmann-La Roche has made available a package of materials, including a videotape "Recognizing CMV Retinitis," and printed material which includes an Amsler grid for detecting early symptoms of vision loss. Persons at risk for CMV retinitis can use these for self-screening between visits to their ophthalmologist. To request this free information, call 800/624-CHECK (24 hour voicemail).

  • David M. Bachman, M.D., and ophthalmologist in Washington D.C., has produced a video, "Visual Field Testing to Detect CMV Retinitis," as an independent project not funded by any pharmaceutical company. He requests a $15 donation to help cover costs if one can afford it, but will send the tape to anyone who needs it regardless of ability to pay. To order this tape, write to David M. Bachman, M.D., Suite B-150, 1133 20th St. NW, Washington DC 20036.

Note: These tapes teach somewhat different approaches. Persons at risk for CMV might want to look at both.


Viral Load Seminars for Physicians: 
Late October Dates in U.S. Cities

Roche Molecular Systems will hold education seminars for physicians and laboratory representatives on the following dates: New York October 15, Boston October 16, Chicago October 17, Coral Gables October 22, Houston October 23, Atlanta October 24, San Francisco October 29, and Beverly Hills October 30.

"The seminars will address the utility of viral load in a clinical setting and will include case study presentations. The program includes presentations from U.S. opinion-leading physicians including Dr. Margaret Fischl (University of Miami), Dr. David Hardy (Pacific Oaks Medical Center), Dr. Tony Japour (Beth Israel Hospital), and Dr. William O'Brien (West Los Angeles VAMC).

Pre-registration is advised, but onsite registration will be allowed if there is room. For more information, contact Louisa Kelly at MediTech, 404/233-6446, fax 404/233-2827.


Viral Load Seminars for Physicians: 
Late October Dates in U.S. Cities

A 58-page in-depth review of viral load,
written by Mark Harrington of the
Treatment Action Group (TAG),
is based on presentations at the XI International Conference
on AIDS in Vancouver, July 8-11, 1996.

From the Introduction: "After the XI International Conference on AIDS in Vancouver... it is clear that monitoring of plasma HIV RNA levels will become a standard tool for diagnosis, prognosis and treatment of HIV infection and for the medical monitoring of antiretroviral therapy. CD4+ T-cell monitoring remains an important parameter, especially in more immune-compromised persons, but viral load will be a key determinant in initiating and changing treatment regimens.

"Unfortunately, while its usefulness is clear, how best to use viral load monitoring is still far from obvious, and there are several competing approaches to controlling viral load, which must be rigorously compared."

The report is available from the Treatment Action Group, 200 E. 10th St., #601, New York, NY 10003, phone 212/260-0300, fax 212/260-8561. A $10 donation is requested, but the report will be provided regardless of ability to pay.


Washington, October 7: 
Promoting Treatment, Care 
in Developing Countries

A forum on HIV/AIDS treatment and care in developing countries will be held October 7, 7:30 - 9:00 p.m. at the Dupont Plaza Hotel, 1550 New Hampshire Ave. NW, at Dupont Circle (on the Red Line Metro). It is organized by the Global Network of People With AIDS North America, and the National Council for International Health AIDS Program, in cooperation with the National Minority AIDS Council. For more information, call NCIH AIDS Program, 202/833-5900 ext. 214.


Benefits: San Francisco 
Training, November 1

AIDS Benefits Counselors will conduct an all-day training for AIDS service providers on November 1. "Benefits and HIV: Navigating the Systems with (and for) Clients" will cover pre-disability planning, disability counseling, Social Security/SSI/SSDI, health and life insurance, Medicare, MediCal, and more.

The class is Friday November 1, 9:00 a.m. to 4:00 p.m. in the Gazebo Room at Ralph K. Davies Medical Center, 14th and Castro St., San Francisco; parking available. Cost is $65 per person. For more information, call AIDS Benefits Counselors, 415/558-9845.

[Note: Part II of the AIDS Treatment News interview with Daniel Fortuno of AIDS Benefits Counselors, scheduled for this issue, has been postponed.]




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

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