Recent raids on medical marijuana buyers' clubs in San
Francisco and Los Angeles as well as the campaign for
Proposition 215, the California ballot initiative which would
legalize use of marijuana for medical purposes, have brought
new attention to the subject of medicinal uses of cannabis.
For people with AIDS and other conditions who might consider
using marijuana as a treatment, the key questions are simple:
Does it work? Do the benefits outweigh possible risks?
For years the U.S. government's answer to these questions has
been a flat "no." Pot has long been classified as a Schedule
I Controlled Substance, defined as a drug with great
potential for abuse and no medical benefit; doctors are
therefore barred from prescribing it. The harshness of this
classification is illustrated by the fact that morphine--
physically addictive and potentially lethal in excessive
amounts--falls into the less restricted Schedule II, allowing
physician-prescribed administration. Morphine is used fairly
commonly in cases of severe pain.
The Clinton Administration's chief of drug control policy,
General Barry McCaffrey, forcefully reiterated the
government's position in an Aug. 16 interview with the San
Francisco Chronicle, declaring, " There is not a shred of
scientific evidence that shows that smoked marijuana is
useful or needed. This is not science. This is not medicine.
This is a cruel hoax that sounds more like something out of a
Cheech and Chong show."
But a review of the scientific literature paints a very
different picture. Accounts of marijuana's therapeutic
effects, as well as appeals for more research and loosened
government restrictions, have appeared in a number of
mainstream medical journals in recent years, including such
prestigious publications as THE LANCET and the JOURNAL OF THE
AMERICAN MEDICAL ASSOCIATION. THE LANCET even called for
decriminalization of cannabis last year.1
An April, 1995 editorial in the BRITISH JOURNAL OF
ANAESTHESIA2 noted, " Cannabis has a long history of
therapeutic use in the Middle East and Asia, with references
as early as the 6th century BC... In recent years data have
accumulated which supports a therapeutic effect of cannabis
for nausea and vomiting caused by chemotherapy for neoplastic
disease, spasticity and muscle spasms associated with spinal
cord lesions or multiple sclerosis, and glaucoma." Though the
journal cautiously noted possible side effects of smoking
marijuana, including bronchitis and bronchial tumors, it
urged scientists to conduct controlled studies comparing
various forms of cannabis to conventional treatments.
A few weeks later Lester Grinspoon, M.D., and James Bakalar,
J.D., wrote in JAMA (the JOURNAL OF THE AMERICAN MEDICAL
ASSOCIATION), "Several informal experiments involving large
numbers of subjects suggest an advantage for marijuana over
[synthetic] oral Delta-9-THC [now sold under the brand name
Marinol]... From 1978 through 1986 the state research program
in New Mexico provided marijuana or synthetic Delta-9-THC to
about 250 cancer patients receiving chemotherapy after
conventional medications failed to control their nausea and
vomiting. A physician who worked with the program testified
at a DEA hearing that for these patients marijuana was
clearly superior to both chlorpromazine and synthetic delta-
9-THC."3
Further, they added, "One of marijuana's greatest advantages
as a medicine is its remarkable safety. It has little effect
on major physiological functions. There is no known case of a
lethal overdose."While specific safety studies of
therapeutic marijuana in HIV/AIDS patients have never been
done, reports from the San Francisco Men's Health Study and
the Multicenter AIDS Cohort Study have found no sign that use
of marijuana is associated with faster disease progression
(recreational use was not distinguished from medicinal). In
its editorial advocating decriminalization, THE LANCET stated
flatly, "The smoking of cannabis, even long term, is not
harmful to health."1
In 1988 Vincent Vinciguerra, M.D., and colleagues reported in
the NEW YORK STATE JOURNAL OF MEDICINE4 on a pilot study of
56 cancer chemotherapy patients who had shown no improvement
on standard anti-nausea drugs. "78% demonstrated a positive
response to marijuana" the researchers wrote. "Toxicity was
mild," mainly consisting of drowsiness and dry mouth.
"Because of the lack of a randomized placebo control group,
the precise role of this agent is unclear" they noted, and
urged further studies.
Indeed, a recurring problem faced by advocates of medical
marijuana is the lack of data from formal, controlled trials.
But many physicians find the accumulated body of anecdotal
reports and informal trials persuasive enough to justify its
use. In a letter responding to the BRITISH JOURNAL OF
ANAESTHESIA editorial,5 W.G. Notcutt, M.D., of James Paget
Hospital wrote, "Pain specialists are well used to using
drugs in situations for which they have not been formally
evaluated and are not licensed." And, he added pointedly,
"Recently I have found an increasing number of patients
'outing' about cannabis and telling me that they find that it
is more effective in relieving pain than prescribed drugs
(including opioids)."
Clearly well-designed, controlled studies of marijuana for
such common uses as nausea relief and appetite stimulation
would help break the present stalemate. Whether such trials
can occur in the U.S. anytime soon remains unclear.
University of California San Francisco AIDS researcher Donald
Abrams, M.D., has been trying since 1992 to put together just
such a trial of smoked marijuana as a treatment for AIDS-
related wasting, but has run into what he calls "an endless
labyrinth of closed doors" at the various government agencies
which must approve such a study and agree to supply the
marijuana. The first proposal Abrams and his colleagues at
San Francisco's Community Consortium put together was
approved by the FDA and the UCSF Institutional Review Board
by early 1994. But after a long review process, the National
Institute on Drug Abuse finally told him in the spring of
1995 that it was refusing to supply pot for the trial on the
grounds that the study was "not scientific."
Frustrated, Abrams and his colleagues reconfigured the
proposal and decided to submit it to the peer-review process
at the National Institutes of Health in hopes that a
favorable peer-review would turn the bureaucratic tide. The
new protocol was put together with the assistance of a
prestigious group of collaborators, including Morris
Schambelan, M.D., the Chief of Endocrinology at San Francisco
General Hospital whose studies of human growth hormone played
a key role in that drug's recent approval for wasting. "We
were quite excited about it", Abrams recalls. "We thought we
really had a chance."
But to the scientists' shock and disappointment, they
received notice in early August that the proposal did not
receive what is known as a "priority score," meaning it was
not regarded as having enough merit to even have a chance at
funding. Although some of the reviewers made what Abrams
thinks are reasonable comments about the mechanics of the
study, "some of them clearly began with a very negative bias"
against studying marijuana, making "comments about 'why these
investigators would choose to study such a toxic substance as
a possible treatment for AIDS wasting is totally unclear.'"
Abrams says he hasn't given up. He and his colleagues will
review the evaluations and consider resubmitting the
proposal, but he adds, "The science is barely surviving the
politics... It's quite frustrating."
Comment
Researchers are reluctant to say so explicitly, but to many
outside observers it seems clear that political
considerations connected to the "War on Drugs" are preventing
patients with AIDS, cancer and other serious conditions from
getting needed information about a treatment which may be of
benefit--and which many are already using.
The political tide must be turned if this research is to
happen in the U.S. One potential vehicle for this is
Proposition 215 on the California ballot. While the proposal
would not directly affect research approvals or funding, its
passage by a healthy margin might provide officials with the
political cover needed to allow medical marijuana studies to
proceed.
Failing that, it may be necessary for medical marijuana
advocates and researchers to look for venues in more
politically tolerant countries such as the Netherlands. If
credible studies can be mounted elsewhere with fewer
political obstacles, they could help provoke a rethinking of
U.S. policy.
References
Deglamorising Cannabis. [editorial] THE LANCET. November
11, 1995; volume 346, number 8985, page 1241.
Doyle E and Spence AA. Cannabis as a Medicine?
[editorial] BRITISH JOURNAL OF ANAESTHESIA. April 1995;
volume 74, number 4, pages 359-361.
Grinspoon L and Bakalar JB. Marijuana as Medicine. A Plea
for Reconsideration. JAMA. June 21 1995; volume 273, number
23, pages 1875-1876.
Vinciguerra V, Moore T, and Brennan E. Inhalation
Marijuana as an Antiemetic for Cancer Chemotherapy. NEW YORK
STATE JOURNAL OF MEDICINE. 1988; volume 88, pages 525-527.
Notcutt WG. Cannabis as a Medicine. [letter] BRITISH
JOURNAL OF ANAESTHESIA. August 1995; volume 75, number 2,
pages 251-252.
Marijuana and Chocolate
by John S. James
Researchers at The Neurosciences Institute in San Diego have
found three substances in cocoa powder and chocolate that
"could act as cannabinoid mimics either directly (by
activating cannabinoid receptors) or indirectly (by
increasing anandamide levels)"; they reported this finding in
a letter published in NATURE, August 22 1996.1Anandamide
is a lipid normally found in the brain "that binds to
cannabinoid receptors with high affinity and mimics the
psychoactive effects of plant-derived cannabinoid drugs." The
letter suggested that there might be some pharmacological
effect of chocolate which may help to explain its popularity.
Incidentally, none of these chemicals were found in white
chocolate. Espresso coffee was also tested, and none were
found.
Although not discussed in this letter, the mechanism of
action of the chemicals would suggest that chocolate might
increase the effect of marijuana.
Comment
While covering the medicinal marijuana controversy, we
learned that chocolate is widely believed to enhance the
effect of marijuana; the traditional chocolate brownies
apparently are not just used to satisfy "the munchies. " This
came to our attention when one activist mentioned chocolate
allergy as a medical condition which could complicate the use
of marijuana, and we asked what that had to do with it. No
scientific evidence suggesting any interaction between
chocolate and marijuana had been published at that time. The
independent arrival at similar conclusions -- through
laboratory studies, and also through folk wisdom based on
experience -- supports the possibility of a relationship.
The practical suggestion, of course, is that chocolate might
increase the effect and/or reduce the amount of marijuana
required for medicinal purposes -- potentially reducing any
risk of side effects from the drug, and lowering the
financial cost. Due to politics, no formal research can be
expected (see "Medical Marijuana: The State of the Research, "
by Bruce Mirken, in this issue). But persons using marijuana
can easily find out if chocolate seems to help them.
References
1. di Tomaso E, Beltramo M, and Piomelli D. Brain
cannabinoids in chocolate. NATURE August 22, 1996; volume
382, pages 677-678.
Large Combination Trials with AZT, ddI, ddC: Results Published
by John S. James
The results of two major U.S. trials testing AZT alone, vs.
AZT plus ddI, AZT plus ddC, and in one case ddI alone, were
published October 10 in the NEW ENGLAND JOURNAL OF MEDICINE.
While the main findings have been presented before at
conferences, formal publication is also important, because it
brings the details together into a definitive report.
The largest of the two trials, ACTG 175, randomly assigned
2467 volunteers (with CD4 counts from 200 to 500) to AZT
alone, ddI alone, AZT plus ddI, or AZT plus ddC.1 Those
assigned to AZT alone clearly did the worst, with almost
twice the risk of death of those assigned to AZT plus ddI, or
to ddI alone. (AZT plus ddC was also found to be better than
AZT alone, but only for those without previous treatment.)
A separate paper reported the results of a viral substudy of
ACTG 175, in 391 volunteers who were given intensive viral
testing (which would have been too expensive to use for all
of the 2467 volunteers in the larger study).2 The major
risk factors for worse outcome were a higher baseline viral
load, less suppression of viral load by the drug treatment,
and the presence of syncytium-inducing (SI) virus.
A third paper in the same issue of the journal reported on a
separate study, CPCRA 007, which compared AZT alone, AZT plus
ddI, and AZT plus ddC, in 1102 patients with more advanced
illness (they had to have an AIDS diagnosis or CD4 count
under 200 to enter this study).3 In this population, AZT
plus ddI and AZT plus ddC were not better than AZT alone
overall, although they might be better in those with little
or no previous AZT treatment. This trial did not measure
viral load.
(Neither of these trials used any protease inhibitor -- one
of which recently showed a major survival advantage even in
persons with a CD4 count under 100.)
An editorial in the same issue1 noted "several important
messages from these studies. First, all persons with HIV
infection who have CD4 cell counts below 500 cells per cubic
millimeter should be encouraged to begin antiretroviral
therapy. We must set aside the therapeutic nihilism and
economic sanctions that have deterred the early
antiretroviral treatment of persons with HIV. The rationale
has never been stronger for the early detection of infection
and initiation of therapy among those with HIV infection. A
second important message is that zidovudine [AZT] alone is no
longer the standard initial treatment of HIV infection. A
third is that measurements of plasma HIV RNA are important
and useful in establishing whether therapy is likely to
influence the prognosis and whether current therapy is
working."
References
Hammer SM, Katzenstein DA, Hughes MD, and others. A trial
comparing nucleoside monotherapy with combination therapy in
HIV-infected adults with CD4 cell counts from 200 to 500 per
cubic millimeter. THE NEW ENGLAND JOURNAL OF MEDICINE.
October 10, 1996; volume 335, number 15, pages 1081-1090.
Katzenstein DA, Hammer SM, Hughes MD, and others. The
relation of virologic and immunologic markers to clinical
outcomes after nucleoside therapy in HIV-infected adults with
200 to 500 CD4 cells per cubic millimeter. THE NEW ENGLAND
JOURNAL OF MEDICINE. October 10, 1996; volume 335, number 15,
pages 1091-1098.
Saravolatz LD, Winslow DL, Collins G, and others.
Zidovudine alone or in combination with didanosine or
zalcitabine in HIV-infected patients with the acquired
immunodeficiency syndrome or fewer than 200 CD4 cells per
cubic millimeter. THE NEW ENGLAND JOURNAL OF MEDICINE.
October 10, 1996; volume 335, number 15, pages 1099-1106.
Therapy for Human Immunodeficiency Virus Infection -- What
Have We Learned? THE NEW ENGLAND JOURNAL OF MEDICINE. October
10, 1996; volume 335, number 15, pages 1142-1144.
Viral Load Access Consensus Statement
[Background note: It is widely agreed that viral load tests
are essential for using protease inhibitors properly. But
many programs which provide drugs for some persons unable to
pay for them do not cover viral load. Most ADAPs (AIDS Drug
Assistance Programs) cannot pay for the tests, because of
Federal funding restrictions. And while most pharmaceutical
companies have patient assistance programs which help people
locate reimbursement systems for which they qualify, and give
free drugs to some who have no alternative, this approach has
been difficult with viral load testing (since the test kit
provided by the manufacturer represents only about half of
the cost of the test, with the other half being the labor of
private laboratories, which have less incentive to donate).]
Two weeks ago, activist efforts to find a short-term solution
to this problem had bogged down, partly because three
competing plans had been proposed, giving companies an
opening to avoid commitment. One plan was to provide viral
load testing by following the well-tested model of patient
assistance programs for drugs, with each company making viral
load tests donating them individually -- but asking the
protease inhibitor companies, and perhaps also the testing
labs, to contribute toward the labor cost. Another plan
called for an administrative structure to receive and manage
the various contributions. A third plan called for a regional
approach, relying on major AIDS service organizations to
receive the kits and do the lab work for their clients.
At the National AIDS Treatment Advocates Forum last week in
Washington, D.C., advocates of the three different plans, and
others, held a series of meetings which led to the following
consensus statement on reimbursement assistance for viral
load.
Viral Load Assistance Program Consensus Statement
The advent of new HIV therapies such as the protease
inhibitors has underscored the need for viral load testing to
monitor all patients using both antiviral and other drugs.
However, there will be a long delay between availability of
these assays and reimbursement from third-party payers. This
void needs to be filled with programs sponsored,
administered, and paid for by the manufacturers of these
diagnostic tests.
To address this need, representatives from the AIDS community
and the pharmaceutical industry formed The Viral Load
Assistance Program (VLAP) Working Group three months ago.
Chiron, manufacturer of the bDNA test, is proposing a program
in which existing laboratory sites will conduct the viral
load tests. Sites currently exist in Atlanta, Boston,
Chicago, Houston, Los Angeles, Miami, Philadelphia, San
Francisco, Seattle, and Washington, D.C.
Chiron is planning to negotiate with the public health
clinics in other cities to expand access and deal with
logistics such as transporting plasma from outside major
cities. Community members are concerned about timely access
to the program for residents of rural areas in the states
Chiron is proposing, as well as access for those in the other
42 states and Puerto Rico.
Chiron has indicated that they will respect a treating
physician's decision as to the number of tests needed for
each patient. A time frame of one year is being proposed,
with an evaluation after six months. Chiron already has an
administrative agreement with an outside reimbursement
program to administer the tests, and will pay for all
associated costs.
Roche Diagnostics has participated in the VLAP Working Group
meetings. Severe problems with Roche's free baseline access
program this summer and lack of use of established
laboratories have hindered its ability to put forward a
program similar to that proposed by Chiron. To date, Roche
has not resolved the damage inflicted on persons with AIDS
who participated in this summer's program and never received
their test results.
Organon Teknika, manufacturer of the NASBA viral load test,
has expressed interest in offering a viral load program.
The undersigned organizations demand universal and immediate
access to viral load tests for all HIV+ men, women, and
children.
Signed: ACT UP (Golden Gate, New York, Paris, and
Philadelphia chapters), AIDS Healthcare Foundation, AIDS
Project Los Angeles, AIDS Treatment News, Critical Path AIDS
Project, Gay Men's Health Crisis, National AIDS Treatment
Advocacy Project, National Association of People with AIDS,
Project Inform, PWA Health Group, San Francisco AIDS
Foundation/BETA, Search for a Cure, and Treatment Action
Group.
Other organizations can sign this statement. For more
information, call Ellen Bay, 201/465-3999, or Bill Thorne,
415/252-9200.
Viral Load Seminars for Physicians -- Rescheduled
Our October 4 issue included a note about a series of viral
load seminars in seven U.S. cities, October 15-30, sponsored
by Roche Molecular Systems. On October 5 these seminars were
rescheduled, and one additional city was added. "Viral Load
Monitoring in HIV Infection: Insight for Individual Care"
seminars are now planned for Atlanta, Beverly Hills, Boston,
Chicago, Coral Gables, New York, San Francisco, and
Washington, D.C., in January 1997.
For information, contact Louisa Kelly at MediTech, 404/233-
6446, fax 404/233-2827, email louisa@mtmusa.com
PhRMA Drops Lawsuit on Government Drug Pricing
Our last issue reported on a lawsuit by the Pharmaceutical
Research and Manufacturers of America (PhRMA), to limit the
law which provides major drug price reductions to certain
government entities. If successful, the lawsuit would have
prevented use of the discounts by programs too small to have
their own pharmacies.
PhRMA dropped its lawsuit on October 3. We received the news
too late to include it in our October 4 issue.
Benefits Planning: What You Must Know (Part II)
Part I of this interview, with Daniel Fortuño of AIDS
Benefits Counselors in San Francisco, appeared in AIDS
TREATMENT NEWS #255, September 20, 1996. Part I provided a
glossary of common programs, described the California law
which allows persons to obtain group health coverage despite
pre-existing conditions, discussed different kinds of group
insurance, and looked at Federal programs for continuing
insurance after employment (COBRA and OBRA), the AIDS Drug
Assistance Program, and MediCal (Medicaid). Part II looks at
State disability, Medicare, other issues including disputes
with insurance companies about claims, and getting benefits
advice.
California State Disability Income
ATN: How does California disability income insurance work?
Fortuño: The California program is very easy to interact
with. It goes by a physician's signature, and trusts that
that signature, should it ever need to be questioned, would
have a medical record which would support it. Whereas
[Federal] Social Security wants to see the medical record.
California disability is a one-year program which is
insurance, just the way Social Security is insurance.
ATN: So for California disability, since it is insurance,
your assets do not matter?
Fortuño: Correct. That means you paid in, and it's going to
be based on what you paid in. And not everybody pays into
state disability. Your employer can choose another program,
and as long as it is better than state disability in some
ways, your employer can have that. For example, people who
work for UCSF do not pay into state disability -- but they do
pay into Social Security.
ATN: I heard that with the state disability, it is important
that you go on it before being fired for not being able to do
the job properly.
Fortuño: If you are finding that you are unable to work, you
need to get information on your benefits, and talk to your
doctor about his opinion of how long you should continue
working. This is very important. However, even if you do lose
your job first, we can often recapture benefits. The key is,
does the medical record support the disability; if it does,
we have been extremely successful in regaining any benefits
connected to state disability and Social Security.
Medicare
ATN: After 29 months of disability, one becomes eligible for
Medicare, which does not cover prescriptions. How does one
handle that?
Fortuño: Finding ways to create the pieces of the puzzle to
create the whole picture of coverage for Medicare really
depends on the individual's situation. What we have found is
that different people use different pieces of the puzzle. It
depends on the individual's assets and what their disability
income is. We always find successful ways that people can
access the full coverage that they are accustomed to, or that
is available to them, when they become eligible for Medicare.
Sometimes for individuals who have high disability income,
and they come to the event of Medicare, getting an
association insurance that will couple with Medicare is the
successful way that they deal with prescription coverage, and
covering the copayments.
Medicare HMOs is another way to work with Medicare. There is
no blanket statement on it; it depends on the individual to
solve the puzzle of getting full coverage from Medicare.
There are various Medicare supplements, but many of them are
not that good, and many have very limited prescription
coverage. There are also some supplements available through
an employer's group coverage, but not available to the
public.
ATN: An HMO might offer a deal where, if you accept managed
care, it will give you some prescription coverage?
Fortuño: Usually a very small amount. And then, depending on
the disability income, and the assets, the individual might
use ADAP, or even possibly Medi-Cal with ADAP. But in some
cases that is not the best option, and they are better off
with getting insurance through an association (to handle
prescription coverage especially). For example, say somebody
has $70,000 per year disability income -- they do not qualify
for ADAP or Medi-Cal, and they also need prescription
coverage, or all that money could be gone on prescriptions. A
way to get them coverage is to find an association that has
policies that will coordinate with Medicare.
The key thing to remember about Medicare is that if your
health-insurance policy says "Medicare eligibility, " that
applies if you *qualify* for Medicare -- whether you enroll
or not.
ATN: If your policy says it will stop covering certain
benefits once you become eligible for Medicare?
Fortuño: Right, that just means becoming eligible -- not
whether you elect Medicare. Many people read that and
interpret it in a more convenient way, and then they get into
trouble.
ATN: You mean that once they become eligible, they ought to
get onto Medicare?
Fortuño:Yes, because their insurance company will deduct for
that coverage, or cancel the coverage which they had
previously. Not all health-insurance policies do that, but in
my experience about 85% do.
ATN: You mean that if you have private insurance, and become
eligible for Medicare, you could lose that insurance?
Fortuño:Yes, you could lose eligibility for your previous
insurance. It depends on the individual policy.
This doesn't mean that your options are closed. It means that
you need to find a different way to continue to get full
coverage. That can be done successfully.
Other Questions and Issues
ATN: What about the lifetime cap problem with private health
insurance?
Fortuño: Lifetime caps are generally high; most insurance
policies have a million, or five million dollars. But it is
something you want to look at. In five years of counseling I
have not met any clients that have met their lifetime caps--
but it could happen, especially with inferior insurance
products. I do not know if you could avoid a lifetime cap by
switching plans during open enrollment.
Where caps certainly do become a problem is with self-insured
trusts, when people create a self-imposed cap by using the
insurance prematurely. People do that because they do not
understand that they are in a self-insured trust which has
that rule. This one-year rule is common with self-insured
trusts. It is a problem that a lot of people have. [See Part
I of this interview for background on self-insured trusts.]
ATN: What do you do if an insurance company disputes a claim?
Fortuño: We refer people to the AIDS Legal Referral Panel.
(See "Getting Your Insurer to Cover New HIV Treatments: A
Crash Course, " by Irwin E. Keller, AIDS Legal Referral Panel
of the San Francisco Bay Area, AIDS Treatment News #238,
January 5, 1996.)
ATN: What are the pros and cons of keeping certain
information out of your medical record?
Fortuño:There are two schools of thought here, which come
together at one point. The main issue is, if your benefits
are in order, meaning you have a good long-term disability
income plan, and you have health insurance that's in place,
and you have a fair to substantial amount of life insurance,
then having your medical records be truthful and honest is
not going to work against you, because you know you can
always change health plans (in California at least).
But if you are not sure of your benefits, if your benefits
are not in order, then you may consider -- and I do not
always recommend it -- you may consider having a physician
who will keep a separate file. But many physicians are not
doing that any more. Even so, many of my clients who have
pre-existing conditions are still able to manage their
benefits affairs and get things in order to where they do
well. It is not the end of the world if you have a disclosed
medical record.
ATN: What could be said about private disability income
insurance?
Fortuño: That topic is big enough for a separate interview.
ATN: Several years ago I knew someone who had private
disability income insurance. When he obtained the policy he
was asked if he ever used illegal drugs, and he said no. But
he was also in a clinical trial, and he told the researchers
that he had smoked marijuana in the 1960s, so his disability
income was cut off.
Fortuño: How long did he have the policy in place before he
went to use it?
ATN: I don't know.
Fortuño: I would get an attorney involved in such a case, and
check how long he had the policy. If he had it for more than
two years, it becomes incontestable, regardless of what
statements he made.
ATN: But couldn't the company charge fraud and contest it
that way?
Fortuño: After two years, I have not seen it happen. I have
seen many people get away with false statements, after having
the policy for two years.
ATN: Are there California programs that can pay private
insurance premiums?
Fortuño:Yes, there is Care HIPP, and the Medi-Cal HIPP
program. These in themselves could be a whole article. They
are based on disability income. They pay the cost of the
health-insurance premium, if someone has health insurance.
ATN: What should people know about managed care under
Medicaid (Medi-Cal)?
Fortuño:We have not yet seen what it will look like. The
principle makes sense, but we do not know about income rules,
etc. It could change from other areas when it is implemented
here.
ATN: What is the difference between SSI and SSDI?
Fortuño: The way I explain the difference between SSI and
SSDI to my clients is this. Social security has two programs.
The Social Security Disability Insurance, SSDI, is disability
insurance. Basically what you are doing is gaining access to
your old-age pension income early, via an insurance clause.
The amount you get reflects what you paid into the system,
via the FICA payroll tax. You can access this program if you
meet the disability criteria; they are not concerned with
your assets or other income.
SSI, on the other hand, is a form of "welfare " Social
Security, for individuals whose disability income, because of
what they have paid into the system or have not paid into the
system, is below approximately $628. It supplements an
individual's income up to about $628. It also follows the
same access rules as Medi-Cal (one car, one house you live
in, and $2000 in the bank.)
ATN: What about the California program for people turned down
by health insurance?
Fortuño: It's not the most effective program available now.
It's called the MRMIP program (California Major Risk Medical
Insurance Program), and it is a last resort that I have not
been using for over a year. We have found more successful
ways to assist people. But it depends on the individual.
The key thing is that today, getting insurance through
associations seems to be the better option for individuals
who in the past have had to use this MRMIP program.
ATN: Is it correct that if you could use an association, you
could also use an employer's group health insurance, if you
get a job?
Fortuño: Right. But if you happen to be self-employed, or
working for an employer who does not have any suitable
program, then the association may be the route. [For
background, see Part I of this interview.]
Getting Benefits Advice
ATN: Is the AIDS Benefits Counselors program open to persons
outside of San Francisco?
Fortuño: ABC is for San Francisco residents. We are too
small. But we do offer provider training, for people who want
to learn, and we are working with other agencies to create
some better literature for the people who provide services,
in addition to more simple-language information for clients
to be able to understand their benefits. That is something we
are developing.
My greatest concern is getting as many people as we can the
knowledge that they need so that they can handle their
affairs. We don't do case management; we are educators,
helping people to be empowered to manage their own affairs,
and then providing them with the additional support that they
need when a specific problem comes up, or a referral to
another agency, such as the AIDS Legal Referral Panel, or to
other agencies for housing, or for other needs. That is how
we view ourselves.
Outside of San Francisco there are other agencies. A good way
for an individual elsewhere in California is to find their
local AIDS Legal Referral Panel, and challenge them to be
able to provide them with benefits information.
ATN: What about the big AIDS service organizations in
different cities?
Fortuño:Not necessarily. In some cases people in social
services may understand one aspect of benefits, but for
example they may not understand the rules of insurance
policies. People may have expertise in a specific area. If
what you need is not in their area of expertise, you could be
ill advised.
ATN: What are some simple printed materials people can get to
study further?
Fortuño:Most printed material now available is very much in
the benefit-insurance language style that leaves people
confused. That is why we are working to develop better
material.
What a person can do is to begin to read the information that
they have (with their health-insurance policies, etc.), and
allow themselves to digest it in a way that they understand
that the benefits usually operate from a set of rules that
are independent to each program -- and know that there is a
way that they coordinate together -- in any benefit scenario.
ATN: What general advice could you leave for our readers?
Fortuño: I tell my clients that benefits are like a
dysfunctional family. You have independent family members who
have specific ways that they are to be interacted with, which
may change. But the family does operate as a unit -- however
that dynamic plays out. Benefits are that way. If you try to
make common sense of benefits you'll never understand them.
It's a matter of just learning the rules, taking notes,
figuring out what applies to you and what doesn't apply to
you. Just because a benefit exists does not mean that it is
one that you will need, or that you will qualify for. It's
not, "I have AIDS and therefore should be able to access
everything," it's finding out which programs are going to
best serve me, and what is the best way for me to be able to
get my needs met. It varies from person to person. That's the
difficult part that people have with them.
There is always a way to make it work -- if you do prior
planning. You don't plan on how to deal with an automobile
accident after the accident. You plan ahead of time by having
good automobile insurance, so if something were to happen,
you can focus on dealing with the situation at hand, not "am
I covered."
Copyright 1996 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.
This article was provided by AIDS Treatment News. It is a part of the publication AIDS Treatment News.
