The Bay Area Reporter - June 4, 1996
Stephen LeBlanc and Rob Sabados, ACT UP/Golden Gate Writers Pool

Wasting generally is defined as an unwanted weight loss often experienced by people with HIV infection. It can be gradual, progressive, and unstoppable without treatment. But with effective treatment, people who are wasting can regain and maintain their normal weight and have a good quality of life, possibly indefinitely. Yet, wasting remains a leading cause of death to people with AIDS even though it is becoming clear that many wasting deaths were and are preventable with long-available drugs.

PWAs can experience two different types of unwanted weight loss: rapid and extreme weight loss, which is often associated with opportunistic infections, and long-term gradual weight loss that resists efforts to treat it with attention to diet. PWAs often find that when weight is lost due to opportunistic infections, it is very difficult to put back on. For this reason, both types of weight loss require aggressive treatment.

Treatments for wasting generally fall into three categories: nutritional and exercise counseling; treatments primarily designed to stimulate appetite, such as marijuana, marinol, or megace; and hormonal treatments designed to build lean body mass. A fourth type of treatment, thalidomide, is thought to interfere with and prevent the metabolic dysfunction that can lead to wasting and is reported effective for some people.

Members of ACT UP/Golden Gate know from happy experience that hormonal treatment for wasting can be an absolute life-saver. ACT UP/Golden Gate member Jeff Getty, well-known recipient of the baboon bone marrow transplant, attributes his survival to receiving hormonal treatments for wasting. "About two years ago, I realized, after numerous comments from friends about me looking thin, that I was starting to waste," reports Getty. "I had been really careful about my nutrition, was taking vitamins, eating well, being very careful about opportunistic infections, but still was losing weight." Getty began taking recombinant Human Growth Hormone, one hormonal treatment for wasting, and began seeing results. Without hormonal treatment for wasting, Getty reports, "I wouldn't have been around to do the transplant - I'd be long dead."

While use of nutritional therapy and appetite stimulants is non-controversial among doctors, many doctors are very reluctant to prescribe aggressive hormonal treatments for wasting. Activists who have studied wasting treatments are skeptical of the benefits of appetite stimulating treatments, because there is evidence that much of the weight gained is fat and water weight and Megace in particular seems to interfere with normal male hormonal functioning.

One reason for doctors' reluctance to prescribe hormonal therapy is that effective drugs for wasting often are some of the same drugs used by athletes and bodybuilders for the last several decades to increase strength and muscle mass. This is quite natural, as athletes use these drugs exactly because they are highly effective at increasing lean body composition, and these drugs as a class have been unfairly demonized in the "war against drugs." While excessive use of steroids is not recommended for PWAs because there is evidence it suppresses the immune system and can increase viral load, medical use of steroids seems indicated for PWAs who have wasting that does not quickly respond to other treatments. Some steroids legally available by prescription, such as nandralone and oxandrolone, have been safely and effectively used to ward off wasting associated with other diseases for decades.

The reluctance of doctors to prescribe steroids or hormones when indicated for PWAs with wasting seems to be lifting in areas with more advanced AIDS care, like San Francisco. A relatively large number of HIV-specialist doctors in that city are using recombinant human growth hormone, testosterone, or legally prescribable steroids to treat wasting. None of the drugs are strictly FDA approved yet for treating HIV-related wasting, but they are available and legal for doctors to use off-label to treat wasting due to chronic infection such as HIV.

Another roadblock that wasting PWAs encounter is the "wait and see" approach adopted by many doctors (particularly at HMOs). Sometimes it seems that doctors believe their patients just aren't "trying hard enough" to put weight back on. Doctors often delay beginning or switching treatments for weeks on end while urging their patients to eat more.

This strategy is doomed to fail in patients experiencing chronic wasting and may place patients at unnecessary risk from extended periods with reduced weight. Effective wasting treatment shows results quickly, with many patients reporting weight gains to near normal in 2-4 weeks and reporting weight gains during the first two weeks of therapy of up to 1/2 pound per day.

A final reason that both patient and doctors are reluctant to acknowledge and treat AIDS associated weightloss is that wasting is presumed by many people to be an "end-stage" AIDS condition, with a hopeless outcome. Untreated, it certainly is. People who lose and don't regain around 5% of their ideal body weight have a poorer chance of doing well when any other challenges to their health come along, and people with more than 30% body weight loss are at an extremely high risk of dying from wasting itself.

Treated however, people who were experiencing even serious wasting two years ago are alive now, with a good quality of life, and have survived long enough to take advantage of newly available anti-viral treatments. "I was severely wasted two years ago, with very low T-cells," reports Matthew Sharp, an ACT UP member and director of the Healing Alternatives Foundation. "Growth hormone, diet, and weight training reversed my wasting and allowed me to regain my health within just a month or two and now I've survived long enough to start Crixivan six months ago. I feel better today than I have in several years. My immune system is back were it was in 1991, and with my T-cells on the rise, I've noticed minor AIDS symptoms like warts, fungal infections, and chronic fever, have disappeared.

Patients who think they may be losing weight or who know they are wasting need to carefully check for opportunistic infections that can cause weight loss such as MAC or intestinal parasites or cancer. They also should meet with a nutritionist and evaluate their food intake, exercise, and use of vitamins. Finally, and most importantly, they should talk with their doctor about their doctor's willingness to use effective hormone or steroid therapy if changes in diet do not produce desired results in a short time (like 3-4 weeks). Patients should resist the tendency for reluctant doctors to ask them to just "keep trying" to gain weight. Desired weight gain should be achievable quickly. If no results are seen with nutritional therapy or appetite stimulants in 3-4 weeks, and if OIs (including cancer) are ruled out, patients with serious wasting should demand hormonal treatment. If their doctor is resistant to using effective hormone or steroid therapy, patients should consider finding a different doctor. t

There are problems regarding price and access to all of the available hormonal and steroid treatments for wasting that must be addressed by PWAs and AIDS activists and that will be addressed in future articles and actions by ACT UP/Golden Gate.

ACTION BOX: No time to waste

People with serious wasting don't have time to wait for all the issues to be resolved, and should demand treatment now.

* More information about wasting and wasting treatments is available from the Project Inform hotline at 415-558-9051 or from ACT UP/Golden Gate at 415-252-9200.

* People interested in receiving oxandralone, one effective and legally available (by prescription) steroid treatment for wasting, can call the drug's distributor at 1-800-741-2698 for information.

* People who want to find out information about doctors in the Bay Area who have a good reputation for aggressively treating wasting can stop by the Healing Alternatives Foundation and review their physicians reference book. Call 415-626-4053 for times and availability.

* People interested in lowering the cost and expanding access to treatments for wasting are invited to an ACT UP/Golden Gate meeting, Tuesday nights at 7:30 at 592B Castro Street (corner of 19th).
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