Landmark Global Survey of People Living With HIV and AIDS Shows Concerning Results That Side Effects Are Leading Cause for U.S. Respondents to Discontinue or Switch Treatment Regimens
MEXICO CITY, Aug. 4 /PRNewswire/ — Results from the groundbreaking AIDS Treatment for Life International Survey (ATLIS), which polled nearly 3,000 HIV-positive patients from 18 countries, show that a concerning number of people living with HIV and AIDS in the United States (U.S.) discontinue or switch treatment regimens due to apprehension or experience with side effects resulting from antiretroviral (ARV) drugs. ATLIS findings also reveal that people living with HIV and AIDS in the U.S. still live in fear of the societal stigma and discrimination that surround the disease although great strides have been made in the past 25 years to promote awareness of and education around HIV and AIDS. The International Association of Physicians in AIDS Care (IAPAC) released these and other ATLIS findings today at the 17th International AIDS Conference (AIDS 2008) in Mexico City, Mexico. The ATLIS results were also simultaneously published in the July/August 2008 issue of the peer-reviewed Journal of the International Association of Physicians in AIDS Care (JIAPAC). ATLIS was made possible through an educational grant provided by Merck & Co., Inc.
“This first-of-its-kind global survey shows that there are people living with HIV and AIDS in the U.S. today who, despite having access to treatments, are choosing not to start or to discontinue ARV therapy due to concerns about side effects,” said Martin Markowitz, M.D., an IAPAC member; Clinical Director and Staff Investigator, Aaron Diamond AIDS Research Center; and Aaron Diamond Professor at the Rockefeller University, New York, NY. “That so many patients are deferring treatment in an age when we have so many options is regrettable. As for those patients who repeatedly discontinue their therapy without clinicians’ guidance, there is a real danger of developing resistance to ARV drugs. Furthermore, treatment interruption without medical monitoring may result in accelerated disease progression. It is imperative that physicians and patients address concerns about side effects openly and evaluate potential new and different treatment options that may be more tolerable.”
“Despite years of education and awareness-raising around HIV and AIDS, there are today people living with HIV and AIDS in America who are concerned about others knowing their HIV status because of societal discrimination and stigma,” said Jose M. Zuniga, Ph.D., President/CEO of IAPAC. “The survey makes it clear that although the HIV community has made significant strides, there is still a great deal of work needed to eradicate the stigma and discrimination that continues to be associated with HIV disease.”
In light of the ATLIS findings, IAPAC encourages a country-wide call-to-action urging the HIV community to: 1) promote dialogue around patients’ quality of life as it relates to treatment potency, dosing strategies, side effects and tolerability; 2) continue to address non-clinical barriers to HIV treatment initiation and adherence, including stigma and discrimination; and 3) continue to increase education and discussion to ensure patients are better informed about their treatment and can assist in making decisions about their ARV regimens.
Side Effects
Results from the U.S. portion of ATLIS show that concerns about side effects may prevent patients from recognizing the value of antiretroviral therapy (ART). Side effects were the most frequent reason (37.5 percent) U.S. respondents indicated they chose to discontinue treatment. Additionally, 27.3 percent of respondents reported that they had elected not to seek treatment because they believe that ART causes too many side effects. Further, respondents indicated that the most common reason for changing the ARV drugs in their treatment regimens was due to side effects (55.4 percent). Compared to all respondents, those in the U.S. voiced substantially more concern over many potential side effects (p < 0.05).
Discrimination and Stigma
Although the disease has been present in the U.S. for over 25 years, ATLIS findings suggest that stigma remains a critical issue for HIV-positive people here, particularly with regard to disclosure of their HIV status. Approximately half of survey respondents (49.5 percent) are “very” or “somewhat” concerned about others knowing their HIV status, with 83.7 percent of those claiming this is predominantly due to concern about social discrimination and stigma. With regard to disclosing their status, respondents are also concerned about the impact on their ability to establish future relationships (50.0 percent). U.S. respondents are most concerned globally that their HIV-positive status could be damaging to their reputation (50.0 percent).
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 six regions in a convenience sample: North America (United States), Latin America (Argentina, Brazil and Mexico), the Caribbean (Dominican Republic, Jamaica and Puerto Rico), 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 and AIDS, specific effort was made to recruit both treatment-experienced and treatment-naive 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 and locally available treatment options.
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 = 2968) 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).
About IAPAC
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 programs, designed to improve the quality of care provided to all people living with HIV and AIDS.
For further information on IAPAC and ATLIS, please visit: http://www.iapac.org/ Media Contacts: Thomas Eck Bora Lee Cohn & Wolfe Cohn & Wolfe (212) 798-9733 (212) 798-9522 thomas.eck@cohnwolfe.com bora.lee@cohnwolfe.com
International Association of Physicians in AIDS Care
CONTACT: Thomas Eck, +1-212-798-9733, thomas.eck@cohnwolfe.com, or BoraLee, +1-212-798-9522, bora.lee@cohnwolfe.com, both of Cohn & Wolfe, for IAPAC
Web site: http://www.iapac.org/
