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Many HIV-Positive Patients Still Fear Stigma

Survey Shows Many HIV-Positive Patients Still Fear Stigma More than 25 Years After the Start of the Pandemic

25 September 2008

Results from the AIDS Treatment for Life International Survey (ATLIS), which polled nearly 3,000 HIV-positive patients from New Zealand and 17 other countries, show many people living with HIV and AIDS still live in fear of the societal stigma that surrounds the disease. In addition, many are so concerned about medicine side effects, they have chosen to stop their treatment.

The survey interviewed 101 HIV positive people in New Zealand. Results showed many respondents were concerned about people knowing that they have HIV or AIDS, primarily because they fear social discrimination and stigma.

Respondents were most likely to tell their friends that they have HIV or AIDS, but believed their parents were the most difficult individuals to reveal their condition to.

The global results revealed concerns such as losing family and friends (41 percent), the impact on their ability to establish future relationships (37 percent), the risk of losing their job (36 percent) and the impact on their reputation (36 percent). Asia Pacific respondents were more concerned about the risk of losing family and friends, as well as the potential impact on their current relationships.

HIV and AIDS Management and Treatment in New Zealand

More than seven out of ten respondents in New Zealand are currently taking prescription medications for HIV or AIDS and more than one out of five people have had HIV treatment resistance. This is when the virus becomes resistant to a particular medication, meaning that medication is no longer effective for that patient.

A third of people living with HIV and taking medication feel that their HIV or AIDS medication has a negative impact on their quality of life and they wish they knew more about HIV or AIDS and its treatments.

People living with HIV are willing to take medication over a long period of time to prevent long-term health risks and their greatest hope for future HIV and AIDS medications is that the medications will allow them to live longer.

Treatment Advances Applauded But Side Effects Remain a Significant Challenge Overall, 26 percent of the global respondents reported that they had elected not to seek treatment, because they believe that antiretroviral therapy (ART- the medications that keep the HIV virus from replicating) causes too many side effects.

Merck Sharp & Dohme Managing Director, Alister Brown, says "When the HIV and AIDS pandemic began in the early 1980s, the goal of education was to give people hope and the goal of treatment was to prolong life. Despite the incredible strides we have made, what this study shows is that some people are rejecting life-saving treatments, because they fear the side effects of the medications that could potentially save their lives, while others on treatment have unnecessarily resigned themselves to live with side effects and poor tolerability in an age where less toxic treatment options are available. Patients can and should now expect more from their HIV treatment."

ATLIS found that more than half of all respondents worried that their medications will cause one or more of the following: face or body shape changes (58 percent), gastrointestinal problems (54 percent), fatigue or anemia (54 percent) and liver disease (54 percent).

The Face of HIV Has Dramatically Changed The ATLIS findings show that nearly half of those patients surveyed (48 percent) reported being in a heterosexual relationship, reinforcing that HIV is reaching broader populations.


About ATLIS ATLIS is the largest, multi-country, comparative, treatment awareness survey of people living with HIV and AIDS. Its main objectives were to: * Evaluate and understand treatment awareness and practices worldwide * Assess the different social and cultural factors that impact people living with HIV and AIDS * Identify how currently available treatments affect the lives of HIV-positive people

IAPAC worked with Ipsos Insight Health, an independent marketing research firm, to survey HIV-positive adults from five regions in a convenience sample: North America (United States), Latin America (Argentina, Brazil, Mexico and the Caribbean*), Europe (France, Germany, Italy, Russia, Spain and the United Kingdom), Asia/Pacific (Japan, Korea, Malaysia, New Zealand and Singapore), and Africa (South Africa). ATLIS was conducted from March through May 2008 via a combination of Internet, phone and in-person recruitment methods by Ipsos Insight Health. Interviews were conducted with a total of 2,968 HIV-positive adults (2,049 male and 919 female). To mirror the actual population with HIV, specific effort was made to recruit both treatment-experienced and treatment-naïve respondents. All respondents signed confidentiality/non-disclosure agreements prior to initiating the survey to ensure any information they shared would be kept confidential in accordance with local laws. The questionnaire itself was translated in local languages, and was slightly tailored for each country to include socially acceptable language. The methodology used in the ATLIS study is quantitative. Results were based upon a convenience sample of HIV-positive people within each of the countries of interest. Results are summarized using percentages. Confidence intervals are not given, however, 95 percent confidence intervals for individual proportions based on the global sample (n = 2,968) will have margins of error within ±0.02. Confidence intervals for a proportion from a specific segment will have larger margins of error (about ± 0.07 for n = 200 and ± 0.10 for n = 100).

ATLIS was made possible through an educational grant provided by Merck & Co, Inc., Whitehouse Station, NJ USA, which operates in many countries as Merck Sharp & Dohme.

About IAPAC With offices in Chicago, Johannesburg, Washington, DC and Toronto, IAPAC represents more than 12,000 physicians and other healthcare professionals in over 100 countries. IAPAC's mission is to craft and implement global educational and advocacy strategies, as well as technical assistance programmes to improve the quality of care provided to all people living with HIV and AIDS.

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