HIV Stigma Continues

HIV Stigma Continues
Results from the groundbreaking AIDS Treatment for Life International Survey (ATLIS), which polled almost 3,000 HIV-positive patients from 18 countries, show an urgent global need for improved HIV literacy and increased dialogue about quality of life. Although great strides have been made in HIV education, the survey indicates people living with HIV/AIDS around the globe still live in fear of the societal stigma that surrounds the disease, and some are so concerned about side effects that they have chosen to stop their treatment regimens. These and other ATLIS findings were released on the 4th August 2008 by the International Association of Physicians in AIDS Care (IAPAC) at AIDS 2008 (the 17^th International AIDS Conference) in Mexico City, and were simultaneously published in the July/August 2008 issue of the /Journal of the International Association of Physicians in AIDS Care/ (/JIAPAC/).
In light of the ATLIS findings, IAPAC encourages a global call-to-action urging the HIV community to: 1) increase education and discussion to ensure patients are better informed about their treatments and can assist in making decisions about their HIV therapy regimen;
2) promote dialogue around patients' quality of life as it relates to treatment potency, dosing strategies, side effects and tolerability;
3) address non-clinical barriers to HIV treatment initiation and adherence, including stigma, discrimination and cost; and
4) advance culturally sensitive HIV prevention programs.
People Still Hiding HIV Status Because Of Discrimination and Stigma
The ATLIS findings suggest that stigma remains an issue for HIV-positive patients, particularly with regard to disclosure of their HIV status. More than half of survey respondents (54%) are “very” or “somewhat” concerned about others knowing their HIV status, with 83% claiming this is predominantly due to concern of social discrimination and stigma. They are also concerned about specific repercussions including the loss of family and friends (41%), the impact on their ability to establish future relationships (37%), the risk of losing their job (36%) and the impact on their reputation (36%). African respondents had fewer concerns about revealing their condition as opposed to respondents in other regions. Asian/Pacific respondents were more concerned about the risk of losing family and friends, as well as the potential impact on their current relationships. Respondents in North America were most concerned that their HIV-positive status could be damaging to their reputation.
Treatment Advances Applauded But Side Effects Remain a Significant Challenge
Study results show that concerns about side effects may prevent patients from seeking treatment. Overall, 26% of respondents reported that they had elected not to seek treatment, because they believe that antiretroviral therapy (ART) causes too many side effects, with responses from Europe (42%) and South Africa (29%) being most prevalent. “When the HIV pandemic began in the early 1980s, the overarching goal of education was to give people hope and the goal of treatment was to prolong life,” said José M. Zuniga, President/CEO of IAPAC.
“Despite the incredible strides we have made, what this study shows is that some people are rejecting life-saving treatment 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.”
While the ATLIS results show that people living with HIV/AIDS believe the potency and overall efficacy of ART has been proven to help patients live longer lives, their concern centers around a number of short- and long-term side effects. Thirty-four percent of treatment-experienced respondents discontinued their treatment primarily because they believed it caused too many side effects. 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%), gastrointestinal problems (54%), fatigue or anemia (54%) and liver disease (54%). Respondents in Latin America and North America voiced significantly more concern about many potential side effects than respondents from other regions (P < 0.05), while African respondents voiced significantly less concern (P <# 0.05). Female respondents in most regions, but particularly in Europe, worried more than male respondents in their respective regions about bone loss and face or body shape changes.
Improvement in Global HIV Literacy Needed
Based on the ATLIS findings, there is a strong need for continued education on a global level about critical HIV/AIDS topics. Overall, 69% of respondents said they wished they knew more about HIV disease and its treatment, a desire that was most commonly voiced by respondents from Latin American (78%) and Africa (71%).
When respondents were asked to describe how HIV drug resistance develops, only 17% accurately answered the question. Fifty-four percent answered incorrectly or did not know the answer and 29% provided only partially accurate answers. North American (48%) and Asian/Pacific (20%) respondents were most likely to select the correct answer to the question, whereas African respondents were more likely to select an inaccurate answer or did not know (79%), followed by respondents from Latin America (58%) and Europe (54%). Previous studies have shown a strong correlation between a good understanding of HIV drug resistance and improved treatment adherence.
“ATLIS results indicate there is still a strong need to educate HIV-positive patients and the world around them. The findings demand an increase in global HIV literacy,” said Zuniga. “It is critical that we empower HIV-positive patients to take an active part in the management of their disease by educating them on the importance of adhering to their treatment and teaching them about the innovations in treatment that could improve their overall quality of life.”
About ATLIS
ATLIS is the largest, multi-country, comparative, treatment awareness survey of people living with HIV/AIDS. 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 2008 through May 2008 via a combination of Internet, phone and in-person recruitment methods. 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. For more information on IAPAC and/or ATLIS, please visit: www.iapac.org Mailing address is:
IAPAC
123 W. Madison St. Suite 1400
Chicago, IL 60602, USA
Telephone: 312-795-4991