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AIDS Treatment News
AIDS Trestment News
November 20, 1998
Contents:
For subscription, donation and editorial information and to read our Statement of Purpose, visit AIDS Treatment News' page here at The Body.
GATT and the Gap: How to Save Lives
by John S. James
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This year's World AIDS Conference (June 28 - July 3 in Geneva) chose the theme "Bridging the Gap" -- the gap between the lifesaving treatment advances for about 10% of people
with AIDS or HIV in rich countries, and the other 90% in
developing countries who have no access to modern HIV care.
Despite the hard work of a few, it was clear at the
conference and afterwards that the world as a whole is doing
little about this lack of medical care (see "'Bridge the
Gap?' Or, 'Cut the Crap!'," Project Inform Perspective #25,
September 1998, available at http://www.projinf.org/pub/25/gap.html).
Before the speeches of World AIDS Day (December 1) again
recount this grim reality, we want to suggest a new target
for AIDS activism -- the rules of international trade -- where
the work of a small number of people might save many lives.
Until recently, pharmaceutical patents and other
intellectual-property restrictions on life-saving and other medications were widely recognized among major industrialized
countries, but the system did not care very much if poor
countries quietly manufactured patented medicines like AZT
without permission when necessary. The patent holders' losses
were negligible, since otherwise there would have been almost
no sales anyway, as the people and governments who needed the
medicines could not afford them and would only have been
forced to do without. And these low-cost products took little
if any market share in rich countries, since few people pay
for expensive drugs out of pocket, and the government health
plans, pharmacies, distributors, private insurance, and
managed-care companies which do pay cannot use illegally
imported medications. (In over 10 years of publishing AIDS
Treatment News, we have not heard of any U.S. resident
obtaining AZT or any other antiretroviral which was
manufactured without authorization of the patent holder -- with
the possible exception of AZT from a Canadian firm, which was
stopped long ago by legal action.)
But today the system has changed. Not only are there major
international efforts to stamp out all pharmaceutical
"piracy" anywhere, regardless of the circumstances and the
human cost, but these efforts go far beyond unauthorized drug
manufacture to impose other restrictions as well. The U.S. in
particular has taken the lead in trying to force even the
poorest countries throughout the world to sacrifice their
public health and the welfare of their people, when necessary
to preserve the interests (even only symbolic interests) of
multinational corporations. U.S. government and industry even
try, with mixed success, to force other countries to obey
rules that the U.S. itself does not follow domestically.
These changes resulted mainly from GATT, the Global Agreement
on Tariffs and Trade. GATT originally began over 50 years
ago, and did not cover pharmaceutical patents. Today's GATT,
which does cover pharmaceutical patents and which established
the WTO, developed recently at a series of meetings called
the Uruguay Rounds. The WTO, headquartered in Geneva, began
in 1995 and now includes about 120 countries; some provisions
took effect before 1995.
GATT and the WTO, intended to improve the world economy by
rationalizing trade and other economic rules, require all
countries to change their laws when necessary to meet a list
of conditions, almost all of which are mandatory. The WTO
serves as an international forum to resolve trade disputes
and regulate retaliation. The result has been a regime such
that any country in the world which chooses to run its own
affairs differently can face ruinous economic warfare by
other nations.
GATT is not all bad. It was supposed to create trillions of
dollars of additional wealth in the world (and may have done
so, before the current world economic crisis). Many
developing countries have better rights under GATT than they
could get if forced to rely on bilateral negotiations with
much more powerful nations. GATT and the WTO can often be
used to support, as well as to oppose, measures which advance
human health in poor countries.
Intellectual-Property Abuses
The problem is that the system is not evenhanded. As with
most such efforts, the rules are distorted to favor the
interests of the rich and powerful -- multinational
corporations, big investors, and large industrialized
countries. The poorest nations and peoples are the biggest
losers.
The result is a growth of what might be called 21st century
tribute. In traditional tribute, vassal states had to pay
extortion money to their conquerors. Today, tribute payment
is usually made not through lumps of gold, but through
submission to biased rules which poison the future of the
weak to unjustly enrich the strong.
Probably the worst single feature of GATT/WTO was the
decision to include pharmaceutical patents and apply them to
developing countries -- effectively locking in a system which
cuts off most of the world's population from almost all
access to new medicines, until 20 years later when the
patents expire. No one can fully tabulate the human costs,
because of the overall complexity; high pharmaceutical prices
are not the only major barrier to better medical care.
Perhaps the most pernicious consequence of the GATT/WTO
system is that many creative possibilities for better medical
care for poor countries cannot begin at all, because they
might cross the rights of too many parties, some of which
will require prohibitive royalty payments, or prohibitive
costs for legal research and negotiation.
Developing countries were given 10 years to change their
patent laws, but certain changes had to be made earlier. Some
of these deadlines have already been reached, setting off a
number of controversies.
It is likely that the GATT/WTO inclusion of pharmaceuticals
will kill millions of people, as companies increasingly price
their proprietary medicines for rich countries and tiny
elites exclusively, with many if not most forms of relief now
legally blocked throughout the world.
What Can Be Done?
Even without changing the GATT treaty itself, it would be
surprisingly feasible for an activist movement to save lives.
The reason is that GATT is not only a fixed, static body of
rules, but is constantly being litigated and otherwise
applied in thousands of specific cases. In this ongoing
activity under the trade rules, the U.S. (the "world's only
remaining superpower") has been an extremist in trying to
force unworkable conditions on other countries -- resulting in
ongoing disputes with countries representing most of the
people of the world.
The reason for the U.S. extremism in this area is that
Congress, the White House, the U.S. Trade Representative, and
others usually hear from only one side -- multinational
corporations, their industry associations, and organizations
which have been created, paid, or pressured to echo their
line. Usually no one even addresses any other side -- effectively turning the U.S. government into a tool of corporate interests. When abuses occur -- for example, when a major pharmaceutical company got Senator Jesse Helms to obstruct an unrelated treaty, in order to punish South Africa for passing a domestic law which could be interpreted to give the public health and welfare of South Africans priority over the intellectual property interests of multinationals -- or when policy makers abroad are given misleading information,
such as copies of a U.S. law with a key section omitted -- the U.S. public seldom hears anything about it.
Access to health care when life and death are at stake could
become a world-class moral issue, like the international
campaign against apartheid. But meanwhile, even a far smaller
movement could restrain some of the worst excesses, by
exposing abuses and forcing debate on the merits. If Federal
agencies heard not only from industry, but from churches,
doctors and other medical professionals, activists, and
others--and from the press as well -- much would be different.
Below we include some authoritative information sources which
activists can use in educating themselves and others.
For More Information
In our experience, the hardest part of engaging this issue
was knowing where to begin. The following can help others get
started.
- The leading U.S. organization on international intellectual
property and consumer protection is the Consumer Project on
Technology, an organization created by Ralph Nader in 1995;
see their Web page on intellectual property and health care
(http://www.cptech.org/ip/health), which has collections of background papers on international and other issues (including U.S. pricing of pharmaceuticals). CPT has additional information, and was able to supply us with
documents on South Africa and the dispute between President
Bill Clinton and President Nelson Mandela about
pharmaceuticals and intellectual property, during Clinton's
visit to that country in 1998. (Much of this information came
from Freedom of Information Act requests to the office of the
U.S. Trade Representative.)
- Health Action International (HAI) is "a non-profit, global network of health, development, consumer and other public
interest groups in more than 70 countries working for a more
rational use of medicinal drugs;" see http://www.haiweb.org.
- The treatment access forum, an electronic mailing list on
AIDS treatment access for the developing world, was started
by organizers of the 12th World AIDS Conference in Geneva.
For more information, including an archive of previous
postings, or how to join the forum, see
http://www.hivnet.ch/aids98. (If you only have email but not Web access, write to: aids98.community@hivnet.ch.)
- Some law firms which advise clients on international
intellectual property have Web sites anyone can use, with
background articles and news bulletins. Of course these are
written from a corporate viewpoint, but they are
professionally authoritative. For example, see the Ladas &
Parry site, http://www.ladas.com.
- The U.S. Trade Representative Web site is
http://www.ustr.gov. The U.S. Trade Representative -- the focal point of most U.S. pressure on trade rules -- is a member of Clinton's Cabinet.
- The International Trade Law Monitor, http://itl.irv.uit.no/trade_law, includes searchable full texts of GATT and other international-trade agreements.
You can find many other relevant Web sites by using the
search engine of your choice (for example, http://www.metacrawler.com). Some of the following search terms may be helpful; and often the Web pages returned will suggest other terms for additional searches reflecting your interests. The same list may also help reporters, librarians, and others using searchable archives of news stories -- or help locate USENET electronic discussions (another forum for
activism) in http://www.dejanews.com.
Search Terms on Pharmaceutical Intellectual Property
and World Trade:
- WTO (or World Trade Organization, http://www.wto.org)
- GATT (or Global Agreement of Tariffs and Trade)
- TRIPS (or Trade Related Aspects of Intellectual Property
Rights, which is a section of GATT)
- U.S. Trade Representative (or USTR; see explanation above)
- Special 301 (a provision in U.S. law which requires the U.S.
Trade Representative to create an annual watch list of
countries for possible retaliation for not adequately
protecting U.S. intellectual property rights; this year about
40 countries are on the list.)
- PhRMA (or Pharmaceutical Research and Manufacturers of
America, representing about 100 U.S. pharmaceutical
corporations, is a major opponent of liberalization on
pharmaceutical patent issues; see http://www.phrma.org)
- Data exclusivity (forbidding the use of data submitted to
regulatory authorities -- even if publicly available -- for
approval of other companies' drugs)
- Compulsory licensing (requiring patent holders to license
their rights in an emergency, or certain other circumstances,
meaning that others can use the rights and pay a set royalty.
The U.S. pressures other countries to end compulsory
licensing of vital pharmaceuticals for their citizens -- but
meanwhile within the U.S. it provides compulsory licensing of
musical entertainment, and of patent rights in other business
contexts. In both cases, the government is responding to
pressure from corporations, which insist on workable
arrangements within the country, but are unmoved by the
sacrifice of people abroad.)
- Turmeric; Neem; and other medicinal plants (on the issue of
multinational companies patenting plants which have been used
in traditional medicine for centuries. Fortunately these
patents are starting to be overturned in the U.S. and Europe,
and in the WTO, as Western institutions are finally beginning
to acknowledge that the traditional uses claimed in the
patents are not original.)
- Parallel importing (importing authorized patented drugs,
originally sold by the patent holder at discount to
distributors in large markets who have more negotiating power
than many small countries, then resold by the distributors
without the patent holder's permission. Parallel importing is
related to the doctrine of "exhaustion of rights" of the
patent holder by the first sale -- which is neither supported
nor opposed by GATT).
- Bolar provision (a provision in U.S. law which allows the use
of patented drugs (purchased on the open market) for medical
research, without the approval of the patent holder. Generic
drug companies can use this law to develop bioequivalent
products while the proprietary drug is still covered by the
patent, so that they will have low-cost generics ready to go
as soon as the patent expires. Some U.S./multinational
pharmaceutical companies want to stop other countries from
using this strategy to reduce drug costs.)
- Trade dress (color and appearance of pills or other medicine.
By trademarking the appearance, companies can create
disincentives to the substitution of generics, because of the
risk that public confusion could cause dangerous medication
errors.)
- Medicines and Related Substances Control Amendment (South
African law strongly opposed by PhRMA)
- Nkosazana Zuma (South African health minister, advocate of
wider use of generic drugs and other public-health reforms)
Other search terms: intellectual property; patent;
pharmaceutical; names of specific countries; 1998 (to help
select recent articles and Web pages); etc.
Conclusion
The current problems of intellectual property and treatment
access may have resulted partly from oversight. A few years
ago this writer attended an AIDS meeting where another
participant happened to be an intellectual-property
professional. I asked him what could be done about the effect
of GATT on treatment access in poor countries. He seemed
concerned, but said that he had never thought of that problem
before. Apparently the effect on access to medical care was
not a significant part of the discussions establishing
today's GATT and the WTO. (GATT seldom mentions
pharmaceuticals, and when it does, it lumps them with
agricultural chemicals -- suggesting that the human
consequences for medical care were not carefully considered.)
This issue is winnable because the powerful pharmaceutical
industry need not be the enemy. When someone dies from lack
of money for treatment, there is no sale and no profit. If
they were saved with a lower-cost equivalent drug -- available
through compulsory licensing or parallel importing, for
example -- there would be no loss to anyone's profit,
investment, incentive, or research. Many lives could be saved
with little financial impact anywhere.
Corporations seem to fear losing precedents for strong
intellectual property protection -- a legitimate concern
perhaps, but not one to kill for. We can support market
incentives, while opposing market extremism which disregards
the health and welfare of the majority of people. Better
arrangements are possible, and we should insist on them.
Industry gains nothing and only loses from condemning most of
the world's people to lack of access to modern medical
treatment, even when they need it to save their lives. Surely
the human race, and the companies as well, can do better than
that. The problem is that corporations often act on
autopilot, with managers fighting for advantage and oblivious
to long-term consequences, including effects on the company's
reputation. Much can be gained without pressuring companies
to go against their interests. They need only stop and think
about what they are doing and what their interests are.
A first step is for potential activists to acquaint
themselves with this issue, and begin discussions on specific
alliances and strategies.
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Testosterone Cream and Gel Available; Prices Vary Greatly
by Tadd Tobias and John S. James
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In issue #306 we reported a nationwide shortage of all generic injectable testosterone products. Both cypionate and enanthate forms are now out of stock at many but not all pharmacies and distributors, and it could take as long as a
year for supplies to be re-established. Brand-name injectable
testosterone products, as well as testosterone patches,
should remain available, but they are much more expensive
than the generic versions, and supplies may be tight at times
because of increased demand due to the unexpected lack of the
generics.
Since that article went to press, we have learned that cream
and gel topical forms of testosterone, which work well for
many people, remain available with no supply problems. And
the total cost of treatment, which can be less than $20 per
month regardless of dose, may be less than with any other
form of testosterone available. But we have found that prices
for top-quality products can vary greatly -- as much as ten
times between different pharmacies -- and that not all of the
cream and gel formulations are of good quality.
These products are available today only from compounding
pharmacies -- that is, pharmacies willing to mix medications
according to physicians' instructions, as opposed to only
dispensing medications in prepared forms. Relatively few
pharmacies will do this, but some of them can ship mail
order, so the products are available anywhere in the U.S.
Traditionally, few insurance or health plans have covered
compounded medications, but more are beginning to cover
topical testosterone as more patients are demanding it. And
the cost of the cream or gel can be so much less than the
brand-name injectable or patch medications that the co-pay
with the latter may be a comparable out-of-pocket expense.
Topical testosterone avoids the need for injections or
patches, and may reduce the large variation in blood level of
the injected medication, which is commonly given once every
two weeks. However, the drug supplied by the cream or gel has
a much shorter half-life in the body, so it is usually
applied twice a day.
We talked to Kathy Lammer, Pharm. D., of Women's
International Pharmacy, which has been in business for 13
years and specializes in compounding hormones which are
applied topically in a cream or gel; we were referred to her
by AIDS treatment expert Lark Lands, Ph.D. She told us that
there is no shortage of their product, which can be prepared
in either cream or gel form, in any concentration from 1 to
100 milligrams/gram (some pharmacies indicate concentration
in percent; 100 mg/gm is 10% testosterone). A one-month
supply (60 grams of cream or gel) costs $17.21 regardless of
the concentration -- a price that Women's International
Pharmacy has not raised in 13 years. It comes with a
measuring device and instructions on applying one gram twice
per day. The source of this company's testosterone is the
soybean plant (but it can be used by people with soybean
allergies).
In Dr. Lammer's experience, older men who are being treated
for hypogonadism usually use the 25 mg/gm strength twice
daily, while men with HIV often use 50 mg/gm twice daily.
Women use much lower doses, usually the 2 to 5 mg/gm
concentrations twice daily. Men have usually preferred the
gel, which is alcohol based, and women have usually chosen
the cream, which is safflower-oil based. In all cases, the
usual amount of the cream or gel applied is 1 gram twice per
day. Men often apply it to the scrotum, because absorption
may be better there since the skin is thin.
The prescriber must be a licensed M.D., D.O., P.A., or N.P.
with a DEA number, since testosterone is a Schedule III
controlled substance; some states require a triplicate
prescription -- an inconvenience for doctors -- but others do
not. There can be up to five refills, but no more since a
prescription for a controlled substance is only valid for six
months; then a new prescription is needed. Most physicians
are not familiar with prescribing topical testosterone; the
prescription can say "testosterone ? mg/gm, apply one gram
twice per day," where the concentration is usually 50 mg/gm
or 25 mg/gm for men, much less for women.
When purchasing testosterone cream or gel, it is important to
choose a pharmacy which has experience compounding this
product. We know of one case where a major pharmacy tried
preparing it, but the drug did not remain properly in the
suspension.
Women's International Pharmacy can be reached at 800-279-5708
(9 a.m. to 5:30 p.m. Arizona time). For additional
information, see its Web site at http://www.wipws.com.
We know of other compounding pharmacies which are also
reputed to have good products. But they are much more
expensive, and we have no reason to believe that they are
better.
Note: UNIMED Pharmaceuticals is developing a form of topical testosterone for FDA approval as a packaged product (not
compounded by the pharmacy). It is unlikely to be available
until at least mid 1999. Probably it will be expensive, but
covered by most health plans.
Comment -- Biodiversity
We believe that environmental and biodiversity organizations
should be aware of topical testosterone, because it might
have a role in saving some endangered animal species. Certain
species are hunted because some elderly men use animal
products to revive lost sex drive. It is likely that they are
suffering from hypogonadism, and that testosterone
replacement would work at least as well as the animal parts,
reducing the killing of endangered species. The cream or gel
formulations may be more readily accepted than testosterone
injections or patches. If this treatment works in these
cases, people would use it if they knew about the
possibility.
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Urgent: Medicaid Rule Changes, Comments Due November 30
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Proposed new Federal rules could prevent all state Medicaid
programs (MediCal in California) from funding medical tests
which are not FDA approved; this would include the
ultrasensitive viral load test (even though it costs no more
than the approved viral load test), and HIV resistance
testing as it moves into the standard of care. Until now,
states have had some flexibility on whether or not to cover
these tests.
What happened is that a Federal law for balancing the budget
required Medicaid to rewrite its rules; 500 pages of new
rules on Medicaid managed care were produced. Many of the
changes are good, but nowhere do they acknowledge the
existing Federal documents which establish a standard of
HIV/AIDS care. AIDS advocates believe that the best approach
now is to get the new rules to acknowledge the Federal
standard, instead of going through the 500 pages to try
getting changes piecemeal. While these rules will only apply
to Medicaid managed care, they will be persuasive for other
programs.
Public comments are due by 5:00 p.m. Monday November 30 in
Baltimore. An original and three copies must be delivered,
not emailed or faxed, so usually they would need to be
shipped by November 27.
More information, including how to submit comments, is being
sent to Project Inform's Treatment Action Network, and will
be posted on the Project Inform Web site,
http://www.projinf.org. If it is not on the site when you need it, or if you do not have Web access, you can call Anne Donnelly at Project Inform, 415-558-8669 ext. 208.
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Health Insurance: New NAPWA Guide
by Tadd Tobias
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The National Association of People with AIDS has published a
guide to your health-insurance rights under Federal law.
Protecting Your Private Health Insurance, How the Health Insurance Portability & Accountability Act of 1996 (HIPAA) Could Help You!, by Jeffrey S. Crowley, M.P.H., and Robin L.
Massengale, is a consumer's guide to this federal
legislation, which passed after the defeat of the Clinton
administration's attempt at comprehensive healthcare reform.
The authors note the three main goals of HIPAA are to give
people with group coverage new protections from
discriminatory treatment, to make it easier for small
businesses to obtain and keep health insurance, and to give
persons losing group coverage new options for obtaining
individual coverage.
The book includes understandable explanations and practical
examples of the various provisions of this legislation. It
also describes the law's major limitations. HIPAA does
nothing to provide access to health insurance for people who
have none, nor to insure that coverage is affordable. The
good news is that HIPAA does mandate uniform and equitable
treatment of all plan members regardless of health status,
medical condition, claims experience, receipt of health care,
medical history, genetic information, evidence of
insurability, or disability.
The guide includes information on pre-existing conditions and how they can affect your coverage, enrollment periods and
limitations of coverage, and options for persons losing group
coverage. It also discusses the tax-free status of
accelerated benefits and viatical settlements. It includes a
glossary, and listings of state and federal agencies that may
be able to answer questions about HIPAA compliance or
obtaining health insurance.
HIPAA is federal legislation but states have flexibility in
how it is implemented. This means that states will vary in
their approach to health insurance. The Institute for Health
Care Research and Policy at Georgetown University Medical
Center has researched these variations for all 50 states, and
has now posted guides for 45 states on their web site,
http://www.georgetown.edu/research/ihcrp/hipaa. If you do not
have Internet access, the Information and Referral Service at
NAPWA will mail or fax your state's guide to you.
For a free copy of Protecting Your Private Health Insurance, How the Health Insurance Portability & Accountability Act of 1996 (HIPAA) Could Help You! contact the Information and
Referral Service at the National Association of People With
AIDS (NAPWA), 1413 K Street NW, Washington, D.C. 20005-3442,
202-898-0414, fax 202-898-0435, or http://www.napwa.org.
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Flu Season Protection: Information on Web
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A brochure, "Protecting Your Family from Influenza," is
available at http://www.apic.org, the Web site of the Association for Professionals in Infection Control and Epidemiology, Inc. It is written for the general public, not specifically for persons with HIV.
It outlines approaches including vaccination, handwashing,
avoiding exposure, and drugs which can be used to lessen the
severity of the illness.
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Retroviruses Conference: Press Must Register by December 31 or Earlier
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All press covering the important 6th Conference on
Retroviruses and Opportunistic Infections (January 31 to
February 4 at the Sheraton Chicago) must register by December
31 (and before press registration fills, which may be
earlier). Any physicians or researchers who want to go but
have not already registered should do so immediately. Even
though the conference was expanded last year, there will not
be enough room for everyone who should go.
For more information about deadlines and how to register, see
http://www.retroconference.org, or call Westover Management
Group, 703-684-4876.
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Medical Marijuana Wins 7 of 7 U.S. Elections
by John S. James
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Medical marijuana measures were on the ballot in six states
and the District of Columbia, and won in all of them by
substantial majorities. In two cases, legal maneuvers
prevented the election results from taking effect. There were
two other statewide votes to liberalize laws against non-medical use, and both of them won also.
Varying medical marijuana measures were on the ballot in
Alaska, Arizona, Colorado, Nevada, Oregon, and Washington.
Five won with majorities between 57% and 59% of the votes
cast on the issue; in Oregon the majority was 55%. In
Colorado, a state court invalidated the election.
In Washington D.C., Congress ordered the local government not
to count the votes -- possibly the first time in U.S. history
that an election result has been kept secret. The votes were
tabulated by machine, but the totals have not been released.
The result is hardly in doubt; an exit poll estimated that
69% of the voters supported the measure, vs. 19% opposed and
12% not voting.
In California, medical marijuana was not on the ballot this
year. But its archenemy, Republican Attorney General Dan
Lungren, was defeated by a large margin in his race for
governor. His deputy, running to replace him as attorney
general, was also defeated.
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Northern California: HIV Advocacy Conference, December
12-13
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A two-day conference on "HIV/AIDS policy and what you can do
as a grassroots advocate for people with HIV/AIDS" will be
sponsored by the HIV Advocacy Network, San Francisco AIDS
Foundation, in San Francisco. The first day will address
issues for the 106th Congress, HIV/AIDS and the new
California governor, HIV surveillance, partner notification
and testing, and responding to the emergency in the African-American community. Day 2 will focus in depth on access to
care/treatment, housing, prevention, and community organizing
skills.
For more information, call Lisa Schneider, 415-487-3034, or
email lschneid@sfaf.org.
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Free Newsletter Subscriptions Through Medical Practices, Clinics
by John S. James
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AIDS Treatment News is starting a program to help physicians
and clinics provide free subscriptions to treatment
newsletters (ours and others) for patients who want them.
One model for this program is the experience at Marin County
Specialty Clinic, which serves many low-income clients and
for over a year has provided free subscriptions to AIDS
Treatment News to about 200 patients. We ship the issues to
the clinic, which mails them to the individuals, so that
their names are not given to anyone (the clinic already has
them). [We could also mail the issues directly from AIDS
Treatment News -- in which case, to maintain confidentiality,
the physician's office could give its patients a form which
they could send us for a free subscription for themselves or
someone they choose, and the medical practice would not need
to mail the issues itself.] The group subscription at Marin
County Specialty Clinic was funded by grants from
pharmaceutical companies -- whose representatives are often
looking for ways to help doctors. AIDS Treatment News was not
involved in arranging the funding.
Medical Director Craig Lindquist, M.D., Ph.D., noted, "We
have used AIDS Treatment News to complement our other patient
education, and have found it an extraordinarily helpful
source of information that can be disseminated on a regular
basis. The quality of reporting and the breadth of topics may
be unmatched in general HIV publications. We have received
many compliments from patients about the program; we have
received questions from patients that have arisen from their
reading articles in AIDS Treatment News. We have extended
subscriptions to community agencies, and to some private
practices who do not have the resources for patient
education, and the responses have been very supportive. The
pharmaceutical companies have also been enthusiastic; they
can see that objective information is reaching all patients
equally." Any practitioner who wants to know more about how
the program was set up at the Marin Specialty Clinic can call
Dr. Lindquist at 415-499-7377.
How the Program Works
- Mechanics: Physicians can mail our newsletter from their
office to their patients if they want to, or they can have us
mail the newsletter, or they distribute copies in their
office or waiting room when patients visit. If we mail the
newsletter, we will provide physicians with free-subscription
order forms which they can give to their patients, so that
the medical practice never needs to give names or addresses
of patients to us. Subscriptions can be changed or
discontinued at any time, and remaining money will be
refunded to the doctor's office.
- Funding: Physicians and other medical professionals are frequently in touch with pharmaceutical-company
representatives, who often take the initiative in asking how
they could be helpful. It may be easy to get funding for
providing treatment information to patients.
Because of our policy of not accepting grants from companies
whose products we might cover, AIDS Treatment News cannot be
involved in negotiating funding from the companies; and we
must be paid by the clinic or medical practice, not by the
companies. If the clinic can find the funding, we can handle
the paperwork to set up the subscriptions. The funding can
also pay for the clinic's administrative expenses if
necessary.
- To avoid concerns about our independence, we are not
willing to have a corporate logo or message stamped on or
mailed with our newsletter. But the funding can be
acknowledged in other ways, such as a letter from the medical
practice explaining the program to patients.
- For more information or to set up a group subscription
under this program, contact AIDS Treatment News, phone 800-TREAT-1-2 or 415-255-0588 (10 a.m. to 4 p.m. Monday through
Friday Pacific time, or leave a message any time), or fax to
415-255-4659, or email aidsnews@aidsnews.org.
Comment
The changing demographics of the epidemic have raised
questions about how independent AIDS treatment information
can be supported. Treatment newsletters are never covered by
health insurance, and are finding it harder to rely on out-of-pocket expenses from their readers.
Industry, government, and charitable donations each have
advantages and disadvantages in supporting treatment
information. The best approach may be to fund medical
practices and let physicians choose, instead of funding
specific materials and giving the physicians a take-it-or-leave-it choice.
ISSN # 1052-4207
Copyright 1998 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.
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This article was provided by AIDS Treatment News.
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