The Local Forum Wrap-Up

The good news: Many of us with HIV are living longer. The bad news: Long-term side effects that no one expected are showing up, and we aren't quite sure what to do. The good news: People and organizations are beginning to address these long-term survival issues. Over the past two months, three forums were held to address some of the problems that we have come to associate with long-term survival, and in even more good news, I'm going to provide you with a wrap-up, if you were unable to attend. Aren't you glad you read this newsletter now?

Drug Resistance

We know that many people who take antiretrovirals for an extended period of time will develop resistance to their medications. The National AIDS Treatment Advocacy Project (NATAP) held a forum November 4 at the DeKalb County Board of Health to address HIV drug resistance strategies. I am indebted to them and to Dr. James Jones, the presenter, for an excellent overview of a difficult subject.

It's important to understand how HIV responds to drugs. It's very adaptable and can survive through mutations. If you're HIV-positive, the virus is present even when your viral load is undetectable. The HIV in our bodies goes through every possible genetic mutation on a daily basis, so there is always some virus in your body that is resistant to antiretrovirals. When you're taking drugs and miss a dose, the resistant virus has a chance to multiply. This is why, in a medical sense, the goal is at least 95% adherence, meaning taking your drugs when you should every day at least 95% of the time. We know that people get clinical benefits (lower viral load, more CD4 cells, living longer, less HIV-related illness) with higher rates of adherence. What we don't know is how long that will last, so if you skip doses of your drugs, you do so at your own risk.

And just to make life more unfair, resistance can develop or already be present even when you take your medications properly. Some people are infected with HIV that is drug-resistant. Your body may have a problem absorbing antiretrovirals, or you may be taking other drugs that lower the level of them in your blood. And there is one school of thought that assumes you will eventually become resistant to any drug you take.

So what can we do when resistance develops? A good start is to take a genotypic or phenotypic test and try to figure what drugs will work. One fairly new approach is double protease-boosted combinations. This involves taking a regimen that uses two protease inhibitors (PIs) with a small amount of Ritonavir, which is also a protease inhibitor. The Ritonavir boosts the amount of the other two PIs, so there is a constant amount of drugs in the bloodstream that is sufficient to keep HIV from reproducing. And of course, if you're resistant to many drugs, the best thing to do is add at least two (if possible) new drugs that you aren't resistant to. That may mean something like...

Fuzeon

We held a forum here at AIDS Survival Project on November 10 to discuss this new antiretroviral. Our panel -- Nicole Antoine, M.S.W.; Maria Trattler, A.N.P.; and Richard, a patient -- had an open discussion about the practical side of taking Fuzeon, also known by the generic name of enfuvirtide. It is the only drug available in the new class of fusion inhibitors. This is good, because people who have developed resistance to a lot of the drugs currently available will still benefit from Fuzeon. More good news: According to our panelists, it doesn't cause the usual antiretroviral side effects such as nausea, gastrointestinal problems, neuropathy, etc. It's also very effective, in one case lowering a patient's viral load from "millions" to 190. Richard saw his CD4 cells jump from 51 to 278, and a viral load drop from over 100,000 to 1,200. The quality of his life also improved.

So why aren't we all taking Fuzeon? The bad news: It has a very long protein structure, so it must be injected -- a big minus to people who don't like needles. The injections can cause swelling and other skin reactions, but all of the panelists felt that learning some tricks, such as how to rotate injection sites, made Fuzeon much more manageable. There are also materials such as charts and travel kits that are helpful, and a local support group for those who are taking (or thinking about taking) Fuzeon.

The challenges for some people are less medical and more financial, as Fuzeon is expensive. As of now, there are only six slots for it to be covered under Georgia's AIDS Drug Assistance Program (ADAP), and they are all filled. So if you receive your HIV medications from ADAP and you need this drug, there could be a problem. Good news: There is patient assistance available from the manufacturers Roche and Trimeris. They also have a special program called ASAP for patients who are starting treatment with Fuzeon in combination with an investigational drug in expanded access.

Dealing with resistance and taking drugs are aspects of daily life with HIV. But living with HIV for the long haul has presented problems that we would have never foreseen, such as changes in our bodies. One problem that seems to be on the increase is ...

Facial Wasting

HIV and/or medications used to treat it are associated with the redistribution of body fat. This is seen in fat distribution where you don't want it, like in the abdomen, and a lack of fat in other places, such as in the facial area. Over 40 people were in attendance at an AID Atlanta seminar on November 4 to learn about the benefits of Sculptra, a drug which has been approved by the FDA for one official use: the treatment of facial lipoatrophy (wasting) in patients with HIV. Dr. Jonathan Jarman and Dr. L. Jack Cheng of Atlanta Cosmetic Surgery were on hand to present and demonstrate the benefits of this new drug, which was just approved by the FDA in August 2004. Dermik Labs has obtained the U.S. rights to Sculptra and requires doctors that wish to administer the drug to be strictly trained in its proper administration. At press time, the doctors of Atlanta Cosmetic Surgery were the only Atlanta physicians trained to perform the procedure.

Sculptra's main ingredient is poly-L-lactic acid microparticles, a natural substance that is both biocompatible and biodegradable. The doctor injects this compound under the dermis and sub-dermis of the face. Facial wasting can be treated with a series of one to six sets of Sculptra treatments, usually one for each side of the face. The current cost for one set of these treatments is $1,500. At present, most insurance companies will not cover a Sculptra treatment. When the Dermik representative was asked if a patient assistance program had been established, the answer was they were "working on it," but nothing was in place as of yet.

Side effects are mostly minor, all of which went away after some time. The only truly bothersome side effect was device-related: subcutaneous papules, or small bumps, at the injection sites, which may decline over time, but may also last for some time, although Dr. Jarman claimed they were usually "felt but not seen" by most people. According to the Dermik representative, the strict training required of all physicians using the drug is to help keep down problems such as these papules and even bigger bumps which can occur, reportedly due to poorly administered treatments.

As you can see, there's a lot to learn from local community forums. If you couldn't attend any of these, you can find more information here at AIDS Survival Project in the Treatment Resource Center, or check out the sources listed.