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