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AIDS Treatment News
October 18, 1996

Contents:

  1. Medical Marijuana: The State of the Research
  2. Marijuana and Chocolate
  3. Large Combination Trials with AZT, ddI, ddC: Results Published
  4. Viral Load Access Consensus Statement
  5. Viral Load Seminars for Physicians -- Rescheduled
  6. PhRMA Drops Lawsuit on Government Drug Pricing
  7. Benefits Planning: What You Must Know (Part II)

Medical Marijuana: 
The State of the Research

by Bruce Mirken

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.

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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

  1. Deglamorising Cannabis. [editorial] THE LANCET. November 11, 1995; volume 346, number 8985, page 1241.
  2. Doyle E and Spence AA. Cannabis as a Medicine? [editorial] BRITISH JOURNAL OF ANAESTHESIA. April 1995; volume 74, number 4, pages 359-361.
  3. Grinspoon L and Bakalar JB. Marijuana as Medicine. A Plea for Reconsideration. JAMA. June 21 1995; volume 273, number 23, pages 1875-1876.
  4. 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.
  5. 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

  1. 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.
  2. 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.
  3. 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.
  4. 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&quot 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 Fortu&ntildeo 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?

Fortu&ntildeo: 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? Fortu&ntildeo: 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.

Fortu&ntildeo: 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?

Fortu&ntildeo: 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?

Fortu&ntildeo: 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? Fortu&ntildeo: 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?

Fortu&ntildeo: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?

Fortu&ntildeo: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?

Fortu&ntildeo: 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?

Fortu&ntildeo: 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?

Fortu&ntildeo: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?

Fortu&ntildeo: 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.

Fortu&ntildeo: How long did he have the policy in place before he went to use it?

ATN: I don't know.

Fortu&ntildeo: 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?

Fortu&ntildeo: 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?

Fortu&ntildeo: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)?

Fortu&ntildeo: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?

Fortu&ntildeo: 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?

Fortu&ntildeo: 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?

Fortu&ntildeo: 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?

Fortu&ntildeo: 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?

Fortu&ntildeo: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?

Fortu&ntildeo: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?

Fortu&ntildeo: 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.




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

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