amfAR, The Foundation for AIDS Research

HIV and the Treatment-Experienced Patient

amfAR COMMUNITY FORUM PARTICIPANTS SHARE STRATEGIES FOR LONG-TERM HIV SURVIVAL

February 26, 2007—Drug-resistant HIV is a serious challenge for the treatment-experienced patient, but new strategies as well as a new class of drugs that fight the virus like never before offer hope for patients with limited treatment options, according to a panel of experts at an amfAR-sponsored community forum in Seattle, January 30. The program was planned in conjunction with local AIDS Service Organizations: BABES Network-YWCA, Lifelong AIDS Alliance, and People of Color Against AIDS Network (POCAAN).

“Don’t give up,” said panelist Timm Cameron of Lifelong AIDS Alliance in Seattle, who was diagnosed with HIV in 1995. “There’s always something coming around the corner.”

Cameron was joined on the panel by Laury McKean, a registered nurse; Peter Shalit, M.D., of the University of Washington; Joey Merrifield, an advanced registered nurse practitioner; and consumer advocates Jeff Henderson and Pat Migliore.

Treatment of HIV disease has come a long way in the past decade. Today, thanks to more than 20 drugs to fight HIV, people with HIV are living longer. More new drugs are in the pipeline. Recent studies have shown that life expectancy for people infected with HIV is now about 20 to 35 years, said Dr. Shalit.

“My personal feeling is that with proper treatment someone with HIV should have the same life expectancy as someone without HIV,” he said. “However, this virus is very crafty. It’s evil and it takes advantage of any little opening that a person will give it.”

The Importance of Adherence

One way to stay ahead of the virus is to avoid developing resistance to existing drugs. Resistant strains of HIV do not respond to certain drugs and approximately 10 percent of people newly diagnosed with HIV are infected with some sort of resistant virus. The virus can also become resistant when a drug combination is not strong enough, when the drug levels in the blood are not high enough to work properly due to lack of adherence, or if a person was taking ARVs prior to 1996 when sub-optimal one-or-two-drug regimens were the standard of care.

Side effects and/or a complicated regimen can make it difficult for patients to stick to a treatment regimen, but panelists stressed the importance of adherence. Panelists and audience members shared ways of keeping to a treatment schedule.

Migliore told of one patient who was having trouble taking his medication because he worked odd hours in a bar. She worked with him to develop cues to remind him when it was time to take his meds. Now when he hears “last call” every night, he knows it is time to take his medication, she said. Cameron uses a pill box with the days of the week clearly indicated, which he fills each month, to keep track of his meds. One audience member said he sets up text messages to remind him when it is time to take his pills.

“It has to work for you, for your lifestyle,” Migliore said.

If side effects are keeping you from sticking to your regimen, speak to your doctor, said Cameron.

“At this point in 2007 there is no need for you to suffer with side effects,” Cameron said. “In the 90s…we didn’t have great treatment for a lot of the side effects. But now there are so many simple little changes you can make that will eliminate some of the side effects.”

But what if a patient develops drug resistance or is infected with a resistant form of the virus? Are there any options? And why take any medication if the virus is resistant?

It is really important to find an experienced HIV doctor with whom you feel comfortable, with whom you can communicate, and who will advocate for your needs, the panelists agreed. And while it may seem counter-intuitive, it is sometimes best to stay on treatment even if it appears not to be working, Shalit said.

“Sometimes it’s better to stay on because the medication is keeping things under some type of control,” Shalit said. “If you stop the meds, this “wild type” (which tends to be more aggressive) of the virus will come back. People get very sick when that happens. Stopping meds is not the right answer.”

Neither is taking one drug that is not working and substituting it for another, he said.

“The virus has its own rules and one of the rules that the virus plays by is that you have to change two drugs at one time. If you only change one drug, you get a failing cocktail and that virus is going to develop resistance.”

The best option, if possible, is to switch to an all new combination, he said.

“If you slam it with three or four new drugs, that’s your best chance of getting it completely undetectable, assuming you can really take those new drugs the way they’re supposed to be taken,” Shalit said.

New Drugs, More Choices

Two new protease inhibitors, a new non-nucleoside reverse transcriptase inhibitor (NNRTI), and a new class of drugs known as integrase inhibitors, the first drug that prevents the virus’ genetic material from becoming part of the T cell’s genetic material, have greatly improved what medical providers can do for people with virus resistant to multiple classes of drugs, Shalit said. (Both the newest NNRTI and one drug in the integrase inhibitor class are currently only available through expanded access programs for eligible patients.)

This is especially good news for patients in salvage therapy whose virus has not responded to any existing treatment.

“It used to be until a couple of years ago that we couldn’t really do anything for people like that except to say, stay on what you’re on or we’ll give you a cocktail that doesn’t make you sick and hopefully things will kind of stay stable for a while,” Shalit said. “But now because we have newer drugs, the goal is to do your best to get the virus completely undetectable and keep it that way because that’s the best way to make sure that you're going to stay healthy long term.”

While the focus of the forum was on the challenges of HIV treatment, panelists and audience members said medication was only one aspect of ensuring long-term survival with HIV.

“It is important for us to remember that we’re whole people, that we’re not just a virus,” said Migliore. “We have to be really responsible as patients to make sure that we round out the rest of our lives, I’ve heard it again and again in here tonight—the power of prayer, the power of spirituality, the power of exercise, of just trying to live your whole life as a whole human being.”

This community forum was funded in part by unrestricted educational grants from Boehringer Ingelheim and Gilead Sciences.