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Survey Reveals Nearly Twice as Many Physicians Than Patients Are Concerned About HIV Drug Resistance

Exposes Gap in Patient Understanding of Critical Challenge in HIV Care

July 18, 2006

Washington, DC -- HIV-treating physicians and patients agree that resistance to anti-HIV medications is one of the most challenging issues in HIV care today. However, their degree of concern is dramatically different, according to a survey commissioned by the American Academy of HIV Medicine (AAHIVM). Nearly twice as many surveyed physicians are "extremely" or "very" concerned about HIV drug resistance (91 percent) as people living with HIV (54 percent). Survey findings also reveal a gap in HIV patients' perceived knowledge versus actual understanding of drug resistance, highlighting the need for increased physician-patient dialogue and consumer-friendly education tools to help patients better understand the potential impact of HIV drug resistance on their overall health.

Resistance, a change or mutation in the genetic structure of HIV, inhibits the ability of a drug, or a combination of drugs, to block reproduction of the virus. It can render drugs less effective or ineffective, leading to disease progression and significantly limiting future treatment options for people with HIV/AIDS. While recent surveillance data are not available, an earlier estimate suggests that 76 percent of HIV-infected individuals failing treatment in the United States have a virus that is resistant to at least one anti-HIV medication, according to a study published in AIDS.1

"While great strides have been made in HIV therapy, resistance to anti-HIV medications continues to be one of the most significant challenges facing patients and physicians today," said Dr. Howard Grossman, executive director, AAHIVM. "Everyone living with and affected by HIV should be concerned about drug resistance and aware of current strategies to minimize and manage its development, such as adherence to treatment regimens, use of resistance testing to help select the most active (or sensitive) regimen and selection of agents with a high genetic barrier to resistance. Ongoing patient-physician communication and education are both essential to successful implementation of these strategies."

This is the first AAHIVM survey to capture perceptions of both HIV-positive patients and HIV-treating physicians about HIV drug resistance. Four hundred people living with HIV and 385 self-described HIV-treating physicians across the United States participated in the survey conducted by Harris Interactive®.


Disparity in Perceptions; Share of Concern

Survey findings show that nine out of 10 (91 percent) physicians are "extremely" or "very" concerned about HIV drug resistance, compared to 54 percent of patients living with HIV. However, both physicians and patients agree on HIV treatment priorities, naming genetic barrier to resistance as one of the most important components of a treatment regimen, along with efficacy, immunologic benefit, tolerability and dosing schedule. Results further show that physicians are more likely to be concerned about managing HIV drug resistance in treatment-experienced patients over those who are new to therapy. The majority of physicians cite genetic barrier to resistance, followed by efficacy (94 percent and 87 percent, respectively), as "very" to "extremely" important attributes of anti-HIV medications to discuss with their treatment-experienced patients. However, when patients are new to treatment, efficacy and tolerability (94 percent and 87 percent, respectively) prevail as the "very" to "extremely" important treatment attributes that physicians discuss with their patients. In contrast, the number of treatment regimens experienced does not change the degree of patients' concern about drug resistance.

"Since the advent of highly active antiretroviral therapy (HAART) a decade ago, HIV has evolved from a near uniformly fatal to a more chronic, manageable disease. Patients have played a significant role in this evolution by educating themselves about the virus and standard of care treatments, spreading awareness, and advocating for increased public understanding of HIV/AIDS," said Dr. Martin Markowitz, clinical director, staff investigator, Aaron Diamond AIDS Research Center and Aaron Diamond professor, Rockefeller University. "Now, 25 years after the first diagnosis of HIV, the emergence of resistance to antiretroviral drugs threatens progress. It is more important than ever that patients and physicians discuss this issue early on and consistently throughout treatment."

The disparity in the level of concern about HIV drug resistance between patients and physicians may partially be attributed to patients overestimating their level of knowledge about this issue. While 61 percent of patients say they are knowledgeable about HIV drug resistance, nearly half (45 percent) of those whose virus has developed resistance do not know to which class of drugs their virus is resistant. In addition, 59 percent of patients have never been told or are unsure if their virus has developed resistance to any anti-HIV medications.

Adherence to Guidelines

While the majority of patients surveyed are not clear about the full range of circumstances under which they should be tested for drug resistance, the majority of physicians are currently following the United States Department of Health and Human Services (DHHS) Guidelines for the Use of Antiretroviral Agents in HIV-1 Infected Adults and Adolescents for resistance testing. In line with DHHS guidelines, nearly all physicians surveyed (99 percent) employ resistance testing in patients across the spectrum of HIV experience to assist in selecting active drugs when initiating and changing antiretroviral regimens in cases of virologic failure.2 While 48 percent of surveyed physicians are "very comfortable" or "extremely comfortable" interpreting the test results, nearly two out of five (39 percent) are likely to seek advice. Ninety-nine percent of physicians use resistance testing when considering switching a patient from one therapy to another due to drug failure, and 67 percent use resistance testing when a patient is first diagnosed and anti-HIV therapy is initiated.

Resistance testing may help maximize the benefit of antiretroviral therapy by identifying resistant strains of HIV. With this information, physicians can alter treatment regimens in an effort to control the virus. There are two primary ways to test for resistance -- genotypic testing and phenotypic testing. Genotypic testing examines HIV's genetic code and looks for drug resistance mutations that are present in the viral genes. Phenotypic testing examines the behavior of the virus, measuring the ability of the virus to grow in various concentrations of antiretroviral drugs.

Closing the Knowledge Gap

Survey findings show that more patient-friendly language and a wider net of resources may be necessary to help close the gap in patient knowledge of HIV drug resistance. Sixty-five percent of patients say their physicians are their primary source of drug resistance information. HIV magazines (11 percent), the Internet (10 percent), and AIDS Service Organizations (ASOs) (six percent) are also cited as information resources. However, half of physicians (51 percent) do not display educational materials about drug resistance in their office, and 77 percent of patients agreed that some of the terms physicians use to explain resistance are difficult to understand. Nearly two out of three patients (64 percent) also noted that they were interested in learning more about new treatment regimens, particularly patients who are "extremely" or "very" concerned about resistance (76 percent).

"Magazines, patient education booklets and Web sites devoted to HIV/AIDS have increased patients' access to consumer-friendly information. Hopefully, the survey findings will encourage patients to reference these resources and enable them to discuss difficult-to-understand topics, such as HIV drug resistance, with their most important resource -- their doctors," said Bonnie Goldman, editorial director,

Survey Methodology

This survey was conducted online by Harris Interactive on behalf of The American Academy of HIV Medicine (AAHIVM) and was made possible through sponsorship from Boehringer Ingelheim Pharmaceuticals, Inc. The survey was conducted among 400 adults, aged 18 and over, diagnosed with HIV/AIDS and 385 physicians who practice in the U.S., in a private office, university or community hospital, clinic or closed-model HMO, treat 50 or more HIV patients per month, have been in clinical practice for two or more years, and who write prescriptions for antiretrovirals. Interviews were conducted between April 10 and 20, 2006. Patient data were weighted to represent individuals with HIV/AIDS in the U.S. Physician data were weighted to represent physicians who participated in this survey. Propensity score weighting was also used to adjust for respondents' propensity to be online.

With a pure probability sample of 400 adults and 385 physicians, one could say with a 95 percent probability that the overall results have a sampling error of +/- five percentage points. However that does not take other sources of error into account. This online survey is not based on a probability sample and therefore no theoretical sampling error can be calculated.

  1. D. Richman, et al. The prevalence of antiretroviral drug resistance in the United States. AIDS. 18(10):1393-1401, July 2, 2004.

  2. Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents: May 4, 2006.

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This article was provided by American Academy of HIV Medicine. Visit AAHIVM's website to find out more about their activities and publications.
See Also
The Body's Guide to HIV Drug Resistance
More Research on HIV/AIDS Drug Resistance