Getting CAM Without Going Broke
As the articles in this issue of Body Positive make very clear, there are many paths to healing and keeping well. Like biomedical treatments, however, CAM treatments can be hazardous to your financial health. There are ways, though, to obtain treatments without breaking your own bank, and specific no-cost or low-cost providers will be listed in the upcoming CAM Access Guide (see box).
Many CAM therapies cost nothing at all. Breathing exercises, working out at home, prayer therapy, and many stress-reduction techniques are a matter of simply choosing to use them. (Of course, the term "simply" overlooks the difficulty of scheduling such new activities in a possibly already hectic life!) Other methods may take some training, but can then be incorporated into your life at your own pace. You may need help at first figuring out how to make your diet work for you, for example, but eating healthy is something you do for yourself (and it may actually save you some money). Yoga, tai ch'i, or various types of martial arts require training, but you can practice on your own. On the other hand, practices such as acupuncture, or the many dietary supplements that can help people with HIV, can be expensive. But there are a variety of programs and institutions that make these available at no or low cost for those of us who aren't so wealthy.
What's for Free?
Dealing with stress and the anxieties and fears that HIV can pose -- along with the stuff life throws at us routinely -- is a daunting challenge. But it can be addressed in a lot of ways that, while THEY won't necessarily eliminate the feelings, can make them easier to deal with.
The first central thing we all MUST do is breathe. If you can take ten to fifteen minutes each day simply to stop and breathe, you can begin practicing the art of meditation.
There are a few basic steps to meditating. The first is to find a comfortable place. The lotus position (a way of sitting cross-legged) is good, but by no means necessary. The trick is to be comfortable without being so comfortable you go to sleep. Also, you need a quiet place -- no phones, kids, beepers, cell phones, radios. This may take some creative planning.
The next step is to focus on your breathing. Breathe in slowly (a five-count, say), hold your breath for another five, and breathe out for five. While doing this, you can use any self-affirming phrase (like "I'm a good person") or even the traditional "om mani padme hum" if you like. Try to clear your mind of thoughts. As intrusive thoughts about what's for supper or did you take your meds come into your mind, recognize them and let them go. You'll deal with them after you're done. It may be tough, but try to sit there for at least ten or fifteen minutes. If that's too long, start out with just five minutes and work yourself up to fifteen over a week or so. As you wind down, let yourself re-engage with reality slowly -- don't just jump right in. This will allow you to rest and calm yourself so you can focus on life with a fresher perspective, knowing you have a place to go right inside when things get to be too much.
The more you practice, the better you'll get -- and you'll learn a lot about patience on the way! You may find it hard at first just to relax and say something like "I love myself." It can feel embarrassing or silly. But you can get used to saying that and find reasons to like yourself. It may bring up reasons why you don't like yourself, and those can be things you can start to change. There are even some studies that suggest that such activity can be, not surprisingly, beneficial to your overall health.
Another free thing you can do is exercise. Take walks of about 45 minutes, particularly to places you know and love. Do some resistance exercise, even just push-ups and sit-ups. These can help strengthen your body, relax you, and prevent some of the lean tissue loss that is a hallmark of HIV infection. Indeed, the focused state you get into can be its own form of meditation.
Prayer therapy, or "intercession at a distance," can be helpful in finding centering and repose. At the National Institutes of Health's Office of Alternative Medicine symposium in July of 1994, an overview of the best controlled handful of studies found that "intercession at a distance" can indeed have a measurable impact on outcome. The presentation was given by David Larson, M.D., a self-described bureaucrat (although rare in that he had a good sense of humor!) who expected a standard bell curve. He distinguished between religion (the vehicles people use to "get there") and the spirituality that at least should underlie religious beliefs.
If you have a religious tradition, use the best parts of your faith and throw out the bigotry. If you are an agnostic or an atheist, you can still use these techniques for yourself and your loved ones. It can't hurt and it's free.
Visualization is another form of meditation. In visualization, you may, for example, imagine the strong and powerful forces of your immune system vanquishing the feeble and nasty little HIVs. Create your own imagery and just relax and try it. It works better when you create strong, powerful images for your immune system warriors and think of the HIV as something you can break or stop.
Massage and body work can also be very helpful. If you have a life partner or other family members or friends around you, start giving each other massages periodically. I don't think I have to extol the virtues of a good massage!!
On the flip side, there are all sorts of habits that we develop that can make life less than fun. Crack, heroin, cigarettes, and junk food are but a few of the obvious ones. Clearly, giving these up takes a lot of work and effort -- and indeed often requires professional help.
For those who choose to use or haven't been able to stop using recreational drugs, reducing the risks associated with them (an idea called "harm reduction") is an essential part of staying healthy. Folks should try to get clean works to avoid, besides HIV, diseases like endocarditis. Check with your AIDS service provider or DAAIR's CAM Access Guide for needle exchange and condom distribution programs.
Groups like Alcoholics Anonymous and Narcotics Anonymous have chapters all over. Many AIDS service organizations have harm reduction and substance abuse counseling programs. Some may have substance abuse treatment programs or referrals as well.
One important aspect to shifting OUT of habits you want to get away from is to have something new to shift INTO. Playing a musical instrument, engaging in sports or other physical activities, taking up gardening, reading about some topic you've always loved, or learning about new things, as well as meditation, yoga, martial arts -- the world is full of ideas and you can create your own reality and new patterns. No matter how hard it is (sometimes because the folks around you expect you to keep behaving the same way), it is your life, they are your choices, and there are many groups and organizations that can help you in making and sustaining more positive, life-embracing choices. Sometimes finding the humility and joy to accept help can be the very hardest first step. What you do with that help is totally up to you. We are all on a journey, and if you make a conscious effort to try to improve your life and deal with the bad stuff, it gets a little easier to handle them.
Food and Diet
Eating is, of course, critically important for people generally, and especially for people with HIV. But the current booming economy ignores the struggles tens of thousands are having in the New York City metropolitan area. As the government pursues its assault on the poor and people with HIV, there are increased restrictions on public services and employment opportunities remain limited. Clearly there is a need to feed folks! There are some excellent organizations that provide food for people with HIV. The Access Guide will contain a current list, and all AIDS service organizations know of meals and pantry programs in their areas. See also "Be Our Guest!" in the May issue of Body Positive.
. A formulary is a list of drugs or dietary supplements that are covered under a program. Although
Medicaid is a federal program, its formularies are developed on a state-by-state basis. Some states, such as New York, cover dietary supplements; some don't. For more information on what your state covers, check the AIDS website http://126.96.36.199/medicaid/default.html. If you don't have a computer, in most places you may use a computer at your local public library. Otherwise, you may wish to try to contact the your state Medicaid Commissioner to find out what is covered.
For example, for updates on the New York State Medicaid Program, you can call Medicaid's John Blizzard at (518) 473-5378. DAAIR has requested information on a paper copy subscription ($15) that includes a current list of what Medicaid covers. Then a $5 monthly newsletter provides updates and changes in the formulary. An important point made at the web site is that managed care providers must cover any drug on the New York Medicaid formulary, even if it is not on theirs.
Nutrition and vitamins covered by New York State Medicaid include multiple vitamins and minerals, vitamin C (ascorbic acid), vitamin B6 (pyridoxine), folinic acid (leucovorin), magnesium glutamate, pediatric vitamin solution with or without iron drops, pediatric vitamin solution with minerals, pediatric vitamin A, C, D solution with iron, vitamin B1 (thiamin), and calcium.
For eligibility requirements, contact the Bureau of Eligibility at (518) 474-9130. The amounts needed by people with HIV/AIDS may be more than they'll provide, so, if you can work it out with your healthcare provider, you might consider increasing the dose to equal that of a potent multivitamin. You may wish to avoid those containing iron if you have chronic hepatitis B or C infection or other liver problems.
DAAIR feels that certain nutrients are a better bet for people to consider strongly over others. For a multivitamin, consider using the BioAdvantix multivitamin, which contains significant quantities of most of the essential vitamins as well as alpha lipoic acid, NAC, coenzyme Q10, and other micronutrients not found in other formulae. At this writing July 1999, BioAdvantix does not have Medicaid coverage but is in the process of applying for a number. (The company is also looking to obtain ADAP coverage, but this will take considerably longer.) The prescription includes both Formula 47 and whey, since Medicaid insists on a certain caloric content for a product to be considered a dietary supplement; a multivitamin alone, bizarrely, is apparently not permitted to be covered.
Another whey protein powder that DAAIR heartily recommends is Nutrivir, which also contains a variety of other nutrients, including alpha lipoic acid, carnitine, NAC, and others. DAAIR suggests that you also consider obtaining a prescription for Carnitor, using a gram a day.
AIDS Drug Assistance Programs (ADAP). Most states have a program designed to address the needs of people with HIV/AIDS who are not eligible for Medicaid because they are too "rich," yet either lack adequate coverage or have no coverage for the various overpriced medications they need to survive. Some of the more enlightened ADAPs (largely as a result of activist pressure) include in their formularies a certain number of micronutrient and other dietary supplements.
One important web site, http://www.aidsinfonyc.org/adap/ap5.html, provides information on what is covered by each state's ADAP. The AIDS Treatment Data Network notes: "Nutritional assessment and counseling available. For people with symptomatic HIV disease or AIDS, 12 visits per year are allowed. For asymptomatic people with HIV, 4 visits a year are allowed. Maximum oral nutritional supplement allowance is 32 oz./day."
The following supplements are included in the ADAP: multiple vitamins and minerals, beta carotene, vitamin B6 (pyridoxine), vitamin B12 (sublingual), vitamin B12 (intramuscular), vitamin C (ascorbic acid), folate, folinic acid (leucovorin), iron, Lactaid, magnesium glutamate, selenium, zinc, Ensure, Ensure Plus, Ensure with Fiber, Resource, Resource Plus, Sustacal, Nutren, Nutrement, Carnation Instant Breakfast, Meritene, Citrisource, Glucerna, Advera, Suplena, Nepro, Vivonex, Lipisorb, Peptamen, Opti, PediaSure.
Unfortunately, some of the food supplement products are not ideal by any stretch of the imagination. They may contain too much sugar or bad fats, which can be a very bad idea for people with HIV, particularly those with diarrhea. Such a discussion and analysis, although VERY important, is beyond the scope of this article.
Other Insurance Coverage. If you have an HMO or other private insurance, you may have some coverage for various forms of CAM, including some dietary supplements, herbs, acupuncture, and other approaches. You should consult with your carrier to determine what is covered. Then comes the battle of actually trying to get it. One of the first, Oxford, attempted to distinguish itself by its coverage of CAM. The services Oxford actually provides, however, are extremely limited (e.g., no dietary supplements, few other services). This is symptomatic of a healthcare system going to hell in a handbasket, when an accountant instead of a physician is the arbiter of what healthcare you may receive. (Although, when the physician knows little or nothing about CAM, even the best system has its own inherent problems. Doctors' knowledge of CAM, happily, is changing for the better, albeit at a glacial rate.)
Obtaining Dietary Supplements at the Lowest Possible Cost. Despite advances in making supplements accessible to people, some supplements are simply not yet widely available. Others may not be eligible for coverage. Getting some physicians to write prescriptions for things like Carnitor, Nutrivir, or vitamins may be difficult (although this too is improving). Various organizations have attempted to make some dietary supplements available at the lowest possible prices. There are a variety of buyers' clubs throughout the country that have sought to make dietary supplements available -- a grassroots, usually not-for-profit approach developed by the users of supplements.
Many supplements, let alone HIV drugs or even drugs to treat opportunistic infections, remain unavailable to millions and millions of men, women, adolescents, and children worldwide. There are more approaches than just the taking the drugs for the bug that must be explored more vigorously -- and made more widely available.
As individuals, we can only do so much -- our time here alive is limited. But there is much more that we can do to heal ourselves. The journey of self-discovery and healing can help to change our local world -- our families, friends, and loved ones. The effects of that work, along with direct action, can help to change the bigger world, for example, by illuminating and even healing the corruption and greed suffered within every government and corporation.
One place you may start is with your care providers. Educate them to the need and value of CAM -- as well as the limitations. Demand that they become more responsive to your needs if they are not already. Even drug companies are recognizing the need for nutritional supplements. For example, two new AIDS drugs require the use of micronutrients. Preveon must be taken with carnitine and agenerase requires vitamin E (and if you're on this drug, you don't need to supplement with extra vitamin E, clearly).
As you become more active in taking care of your own health, you will be better able to help those around you and create the revolution in health and caring that can send ripples around the planet.
There is more to health than just taking pills!
Also, please remember that many of the approaches that are discussed in this issue of Body Positive and that will be explored at the conference have not been adequately studied. Many fall into the "can't hurt, might help" category. As always, you must use your own best judgment as to which approaches are best for you. DAAIR will continue to investigate CAM therapies and to provide balanced information to help you in making your decisions.
George M. Carter has been an AIDS activist for ten years and was a member of ACT UP/NY for much of that time. He is currently the Director of Treatment Information Development for DAAIR and a member of the Hepatitis C Action and Advocacy Coalition (HAAC)/NY.
This article was provided by Body Positive. It is a part of the publication Body Positive.