This Month in HIV: State-of-the-Art: HIV/AIDS Medications for the Treatment Experienced
So for other people, for people listening to this, if they are multidrug resistant or treatment experienced and they know they have some resistance: what do you recommend that they do? I know the latest issue of Test Positive Aware Network magazine is called "Hope for Survival, Salvage Therapy."
Well, for people who are treatment experienced, I think the most important thing is to find a good provider.
How would you define a good provider?
One who has a sizable percentage of patients with HIV, if you're lucky enough to have one like that in your area. If not, maybe you could drive to an area where they do, where there is that kind of doctor.
How do you find that out? You call the doctor and say, "How many HIV-positive patients do you have?" And you hope they'll answer honestly? They'll say they have a lot, so come on over. I mean, should you just call an AIDS organization, like Test Positive Aware Network in Chicago, and say, "I need a doctor nearby?" Is that the best way?
Yes, that's a really good point. There are many HIV/AIDS service organizations. Test Positive Aware Network is here in Chicago and we produce an Illinois HIV/AIDS services directory. [Click here to browse this directory.] So you can call us; we'll send you a directory, and you can look up, or you can go online and do the same thing.
There are directories in other cities, as well, where you can find service providers in your area. You can call an HIV/AIDS service organization and you can say, "Hey, look. You know, I'm HIV positive and I don't know any doctors, and I just moved here to this area. Would you recommend anyone?" Many times, they'll give you recommendations over the phone. So that's a great tool for people to use. [To find an HIV/AIDS organization near you, click here.]
For someone who has multidrug resistance, or someone who is treatment experienced, finding a health care provider with lots of experience is critical. I don't know if it's as critical for someone just beginning treatment, but it's critical for someone with some treatment experience because of the resistance test. You want a healthcare provider who is very able to understand your resistance test results. Treating somebody with HIV drug resistance is an art, I think, at this point. At The Body we still get letters from people out there who say, "My doctor says I'm resistant to everything and I should just pack up my bags and prepare to die." It's frightening!
Absolutely. I mean, we get letters, too. It's kind of scary looking at some of the letters that we get...and what some doctors are telling people to do. But even with the guidelines, the treatment guidelines [click here to view a PDF of the latest U.S. HIV treatment guidelines] that are there for doctors; if they don't use them, or if they don't --
If they don't know they exist.
Right. If they don't even know they exist, then you're really pretty much out there on your own. So definitely use resources in your area. Because many of these AIDS service organizations, including Test Positive Aware Network in Chicago -- a lot of the people that work here, that I work with are HIV positive themselves. So you can talk to a staff member or a client or a volunteer, somebody at the organization, who's gone through some of these experiences themselves. They can kind of hold your hand and kind of talk you through, and give you some suggestions on what to do and where to go for treatment.
So do you think most people are proactive about getting a resistance test and making sure it's understood by their doctors?
You know, I don't know. That's an interesting question. I would hope that they are. If you're failing --
If the regimen's failing you ...
"Remember: You don't fail your regimen, it fails you. If your treatment is failing, then you want to get a resistance test."
If your regimen's failing you, thank you. [Laughs.] Because remember: You don't fail your regimen, it fails you. If your treatment is failing, then you want to get a resistance test. You definitely always want to get a resistance test.
While you're still on the regimen.
Right. If your viral load becomes detectable -- because it has to be detectable for the resistance test to be even useful -- and then an expert can look at that and decipher the different mutations.
It's very complicated. So they really have to have some experience with that. That's why it's important to have an experienced provider. Then they can help you make a treatment decision based on your resistance profile. But I don't know if people are very proactive in that. I would hope that people understand the usefulness of resistance testing. And again, in the treatment guidelines, it will spell out very clearly when and where you should be using resistance tests, and when they are recommended for people in the course of their treatment.
I know that the new recommendations are that if you have a detectable viral load for a length of time -- I don't know how that's defined -- but for a length of time, that you should get a resistance test. You should not stay with a detectable viral load. I believe that's the new recommendation -- that there are so many new medications out there that you can be switched, whether these medications are still in development in clinical trials or under expanded access or just newly approved. But I know it's not just a marketing slogan. It's a physician recommendation, at this point. For most people there's no reason to stay with a detectable viral load.
For most people, correct.
I mean, there are some people who are still resistant to everything, but there are these new classes, integrase inhibitors. And if they could get people on that, or get people on the CCR5 inhibitor; those are two new classes that nobody can be resistant to, really.
Correct. And even though these drugs aren't approved yet, they are currently in expanded access, so they all have expanded access programs: Merck's integrase, raltegravir, MK-0518, and Pfizer's entry inhibitor, maraviroc, have expanded access programs. So they should be able to get access to these drugs if they need them. So, right. They shouldn't have to not have any options; they shouldn't be resistant to those drugs.
So it is a different world.
It is. The entire landscape is changing. It's an exciting time, and I think this year is going to be an exciting year for HIV therapy. It already is. There are other drugs, in addition to the two that I mentioned, that are being developed and in clinical trials. There's a new non-nuke, etravirine, by Tibotec, and that's also in expanded access. And Prezista, the new protease that was released last year, I believe, is really good for people with resistant mutations -- already resistant to many of the current protease inhibitors -- so it was, in fact, developed for those patients specifically in mind.
So hopefully this information has gotten out there. I know a lot of people were waiting for the next drug to come along, so they did not change medications, even though their viral load was 50,000. Hopefully the news got out to everybody that there are new meds, and if they switched, they could possibly get their viral load to undetectable. You know a lot of people who are positive, as I do, and a lot of people are telling me they are undetectable for the first time in 25 years.
Exactly. It's exciting. They are doing clinically very well, and they're feeling better and they're looking better. A term that was used ten years ago when the protease inhibitors first came out was "Lazarus syndrome," people literally rising from the dead. This is another time that's hopefully going to offer a lot of new hopes and a lot of new options for people that haven't had them.
So it's exciting. We're really lucky to have these new drugs and the development, the research that's going into the new, different classes of drugs. Because it definitely opens up the doors. As you said, there are a lot of people now that are, for the first time, undetectable. And in the course of their treatment history, this is the first time it's ever really happened for them.
I guess we need a new term for this era. Like we had the term "Lazarus syndrome," a wonderful term to name the new era. We need a new name ... that's not a marketing slogan. I guess we'll have to think of something. So, anyway, thank you so much, Jeff. Good luck with your regimen. I hope you don't have to go off of it. We'll give everyone your e-mail so that they can contact you for questions. Thank you so much! Congratulations on getting your issue out on time.
Thank you so much, Bonnie. Yeah, if people want to, they can contact us for copies of the March/April issue.
So they can just get it via mail, as well? If they want it mailed to them?
Yes. We can mail it out to them, or we can let them know where they can get it in their area, if they would rather pick it up in an AIDS service organization in their area. It's also available online on our Web site: www.tpan.com. In the May/June issue that will be coming out next month, we'll be talking about some of the new drugs that were reported on at the retrovirus conference in L.A. in February [14th Conference on Retroviruses and Opportunistic Infections (CROI 2007)]. There are a lot of new drugs that we didn't even talk about that are coming down the line, that give a lot of reason for hope for a lot of people. It's an exciting time.
Thank you for having me. I really appreciate it.
To e-mail Jeff Berry, click here.
To read a copy of Test Positive Aware Network's March/April issue of Positively Aware, click here for a PDF.
Copyright © 2007 Body Health Resources Corporation. All rights reserved. Podcast disclaimer.
This article was provided by TheBody. It is a part of the publication This Month in HIV.
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