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Misinformation in HIV/AIDS Care

There's More Than One Way to Skin a Virus

January/February 2006

Misinformation in HIV/AIDS Care
The advances made in HIV therapy have obviously saved thousands of lives.

But now, almost 20 years since the first HIV medication came on the market, the number of possible drug combinations can be overwhelming. The intricacy of treating HIV cannot be overstated, causing overall care to be problematic and sometimes substandard.

Few HIV practitioners have the time or wherewithal to keep up with the latest cache of information. People with HIV themselves cannot possibly stay completely informed. Pitfalls abound.

Doctor Problems

Docs often practice by their clinical experience or lack of experience, rather than following the latest treatment information based on large randomized controlled clinical trials. Rural doctors have much less access to other HIV providers and treatment forums. Obviously, some doctors are better at keeping up with the information than others. The best HIV treater has been in practice a long time and gets continuing HIV provider education.

Doctors are also rushed, locked into the time constraints of managed care. They also have more patients, since the field of HIV medicine is getting smaller due to competition and market forces.

In some cases, unfortunately, there is complacency and less concern for the whole person that results in a lack of optimal care. There is such a focus on the virus that sometimes the host is forgotten. STD infection, re-infection, depression, substance use and co-infection are some pressing concerns and issues with HIV-positive people.

Myths and Complacency

Some people with HIV today are less informed because the desperation around illness and death may not be an issue anymore. They also may have become apathetic and not want the latest treatment information, or they may not have access to it, or know how to access it. They also may ask for a medication they have heard about through an urban myth or advertisement, or want to stop a medication, not understanding that there may be effective ways to deal with side effects. On the other hand, some want a drug simply because they have seen positive effects with it out in the community.


The Department of Health and Human Services Guidelines for the Use of Antiretroviral Agents in HIV-1-infected Adults and Adolescents ( can help providers. But treatment guidelines are only that, a guide for treating, not a prescription.

Nevertheless, the guidelines are the best amalgam of HIV treatment information we have and can be helpful, especially for the inexperienced medical provider. They are continually updated to keep up with the current information.

Drug Ads

The HIV drug market is big and getting bigger, and competition is fierce. New regulations have allowed for less restrictive pharmaceutical advertising, so we are now bombarded with ads and aggressive visits from pharmaceutical sales representatives, sometimes prejudicing our overall treatment opinions. It's easier to remember a subliminal new drug ad campaign rather than read up on its side effects in the latest medical journal or treatment newsletter.

Balance must be weighed by staying current with the actual research and staying unbiased despite the aggressive marketing.

Treatment Stories

As a treatment activist and educator, I have heard many stories about mistakes in care and treatment. Some of the stories I hear would make your hair curl. Others are just common misunderstandings or mistakes.

Among the questions I get asked are the following: What is the best drug combination for starting initial therapy? Which drugs are less likely to cause lipodystrophy? What drugs are safest and which will interact and be cross-resistant? Should I take a newer once-daily drug or stick to my old twice-daily regimen? Should I boost my protease inhibitor? Are the new drugs necessarily better? Safer? Can I stop my treatments now that I am doing so well?

Switching Drugs

One common story I hear is about switching therapies. Lou is a long-term treatment experienced man who approached me about his concern over his low CD4 count and his high viral load. Knowing he had a few options, he had asked his Chicago doctor to switch drugs, to no avail.

I asked if the doctor had spoken to him about Fuzeon or the new protease inhibitors he had not tried yet. My concern was that there may have been reluctance in prescribing the twice-daily injectable Fuzeon. Whatever the case, I saw that Lou had lost a lot of weight and with all I knew, was willing and ready to switch to some new options that would most likely benefit him.

There has been great impact in treating late stage HIV in the past years with new classes and drugs that are not cross-resistant with each other. It is worrisome that less aggressive doctors would hold off these new options for someone like Lou unless there is some other medical condition or drug interaction issue. I urged him to force the issue with his doctor.

On the other hand I have heard from people that doctors have wanted to switch to a new drug when according to them, it appeared there was no need to. Most of the time these people were very stable and doing well, with undetectable viral loads, stable CD4 levels and no sign of side effects. They had no indication of why their docs wanted them to switch. Many patients for various reasons will not refuse a doctor's wishes.

Reyataz and Lipids

Many docs are unnecessarily prescribing Reyataz as a switch therapy. It has shown benefit in not raising lipid levels, but no proof in reducing fat redistribution. Unless there is clear benefit to switching a drug, rocking the boat may actually do harm. We need more head-to-head comparison studies to show one drug is superior to another before switching. As the old adage goes, "If it ain't broke, don't fix it."

On the other hand, with rising lipids that haven't been brought under control, and especially with other cardiac risk factors, switching to Reyataz might be a good strategy to try.

Drug Data, Adherence and Trizivir

Prescribing an initial regimen should be based on the individual with back-up information from clinical trials. One would hope that doctors understand that the first regimen is the most important and that the patient's understanding of adherence is crucial to maintaining effectiveness.

Providers also must not assume that because a patient is a substance user or person of color that they are any less likely to adhere to their medications.

One e-mail response I received was about a doctor incorrectly prescribing Trizivir for a treatment-experienced person with documented drug resistance. While I understand the need and desire for treatment simplification, at what expense should that be done? Are doctors at ease knowing that their patients are on a sub-optimal regimen simply because they are comfortable that they can adhere to it? Are treaters too busy to work with their patients on treatment adherence? Or again, do they just not have time?

Videx/Viread -- and Other Drug Interactions

Drug interactions discovered shortly after drug approval have become an important treatment issue.

The Videx/Viread interaction was discovered after this backbone combination was in widespread use, the thrill being that they are both once-a-day drugs. I heard about these interactions through the grapevine before the news was out. Even today I hear of some doctors not warning of potential problems with Videx/Viread.

Zerit and Retrovir, and Side Effects

What do people know about potential side effects with prescribed drugs? Today there is a better understanding of metabolic issues and lipodystrophy.

It baffles me that there are people still using Zerit even though we know it is one of the causes behind lipodystrophy. Even Retrovir has been correlated with lipoatrophy, but docs are used to prescribing it rather than newer, safer, less toxic drugs.

There are also ways to manage elevated lipids besides use of statins, but once again docs rely upon a pharmaceutical intervention rather than having a discussion about exercise, nutrition, and complementary therapies.


Norvir, one of the most commonly used protease inhibitors, is in widespread use now as a boosting agent to increase levels of other protease inhibitors, making them more potent. There are more drug interactions with Norvir than any AIDS drug, even though the boosting dose is lower. Many people still don't realize that Kaletra has Norvir in it.


There were also several drug interactions discovered before Aptivus, the newest protease inhibitor (PI) on the block, became approved. It lowers levels of other protease inhibitors, so they can't be taken together. Using a dual PI combo is one treatment strategy that's not available with Aptivus.

Street Drugs

Unfortunately, we still do not know much about the interactions of recreational drugs with antiretroviral drugs, and we may never know until people overdose.

Drugs, Drugs, Drugs

These issues highlight just a few of the growing number of possible drug interactions and their complexities. Interactions can impact effectiveness and drug resistance, and even be dangerous and fatal.

Treatment activists are now demanding that pharmaceutical companies perform interaction studies with all antiretroviral drugs and concomitant medicines used by people with HIV, long before approval.

Study Us!

Unfortunately, many doctors do not offer clinical trial information to their patients. In many cases, joining a trial is the best way to provide a treatment either because of access issues or due to the patient's need for new compounds not yet approved.

Some doctors may not want to "lose" their patients to a clinical trial, but a study should never be a substitute for good clinical care.

My survival is based on the availability of new treatments through clinical trials and it is known that research institutions are clamoring for new recruits. Minority populations also protest there are not enough minorities enrolling in clinical trials. Recruitment by all people affected by HIV is vital for ongoing treatment success and scientific breakthroughs.

Stopping Therapy

Structured treatment interruptions (STIs) are an area of important continuing research. I hear of people who do not have the complete picture and are interrupting their HIV medications.

While it may be necessary to stop medications due to toxicity, the word is not final on interrupting HIV meds, and we will not know more for at least another year. I continue to speak to people who stop their meds out of the blue.

The best way to stop therapies is to enroll in a STI clinical trial where monitoring is frequent.

Ask the Pharmacist

Less and less time is spent describing new drug information to a person with HIV. All the relevant information a person may need versus the time the doctor has to spend explaining it is becoming a bigger issue as the information becomes more cumbersome and complex.

Patients need to know that they should also discuss any new treatment with their pharmacist or any other medical provider, such as the Physician's Assistant or Nurse Practitioner.

We're All Human

I remind clients here in TPAN's TEAM program (Treatment Education Advocacy Management) that doctors are only human and they make mistakes. It is, needless to say, challenging to treat a long-term chronic and incurable disease.

There are countless variables to misinformation in HIV treatment and this article certainly cannot address everything. However, the point here is to get people with HIV and doctors to communicate with each other and to do their homework. Stay current, and stay informed.

As always, it is time to take stock of all the HIV treatment advances, look at what has worked and what hasn't, evaluate what can be changed and advocate for better research, as well as patient and provider education and support. Providers and patients should acknowledge and face the gaps in understanding and work together as a team to attain optimal health in 2006 and beyond. The question becomes: how can we all do a better job with keeping up with all the changes and work as a team to stay as healthy as possible!

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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
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