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Susan Blumenthal, M.D.

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Pervasive Stigma Surrounds Women Living with HIV/AIDS

Posted: 04/01/08 04:23 PM ET

By Susan J. Blumenthal, M.D., Elisha Dunn-Georgiou, and Melissa Shive*

Despite 25 years of progress in diagnosing and treating HIV/AIDS in the United States, at least one major impact of the illness has not changed -- the stigma surrounding the disease. Motivated by the changing face of the HIV/AIDS epidemic, amfAR, The Foundation for AIDS Research, has just released the results of a nationally representative online survey (1) conducted by Harris Interactive of the public's attitudes towards women with HIV. The results revealed strikingly high levels of stigma against HIV-positive women that is fueling the epidemic, underscoring the urgent need to end the discrimination and misperceptions about this disease.

Women represent a growing proportion of people with HIV/AIDS -- accounting for 27 percent of all new AIDS cases in the United States in 2005, more than triple the rate of 8 percent in 1985. Globally, 46 percent of people living with HIV -- about 15.4 million -- are female.

In 2005, HIV infection was the fifth leading cause of death among all U.S. women aged 34-44, and the sixth leading cause of death among women aged 25-34 in the United States. Moreover, African American and Hispanic women represented 24 percent of the female population in the United States but accounted for 82 percent of the total AIDS diagnoses that year. And both domestically and internationally, women continue to face widespread social and gender inequalities that can make it difficult for them to reduce their risk of HIV infection.

Shame, blame, and stigma against women with HIV are major obstacles to prevention and treatment of HIV/AIDS. Stigma leads to the marginalization and exclusion of individuals and may exist in many forms, such as societal stigma and self-stigma. When it comes to HIV/AIDS, there are several additional factors that contribute to stigma, including people's fear of contracting this potentially life-threatening disease and its association with behaviors that are already stigmatized in many societies, such as intravenous drug use and some sexual behaviors. Additionally, there are people who blame infected individuals for contracting HIV/AIDS, believing that the disease is the result of a moral weakness, such as promiscuity.

Women with HIV/AIDS may suffer greater stigma than men. For example, they may be blamed as carriers, either as prostitutes infecting men or mothers infecting their infants. Historically, they have been excluded from drug clinical trials and omitted as a focus of research studies on HIV/AIDS. Furthermore, there are multiple biological, social, economic, and environmental risk factors that increase women's likelihood of contracting HIV. The physiology of the female genital tract makes women inherently more vulnerable to HIV than men. Additionally, social and gender inequalities, such as poverty and unequal educational and occupational opportunities, force women to rely on male partners for financial support, making it more difficult for them to insist on interventions that reduce their risk of acquiring HIV.

The results of amfAR's survey reveal pervasive negative views of HIV-positive women and a high level of discomfort in interacting with them. The responses of survey participants reveal a lack of knowledge of how HIV is transmitted and misplaced fear of contracting the virus that indicate a pressing need to scale up prevention and education efforts.

The survey found that one in five respondents would be somewhat or not at all comfortable having a close friend who is HIV positive. Sixty-eight percent of respondents indicated that they would be somewhat or not at all comfortable with an HIV-positive woman as their dentist; 59 percent said they would be somewhat or not at all comfortable with an HIV-positive woman serving as their childcare provider; and 57 percent said they would be somewhat or not at all comfortable having a female physician who is HIV-positive. Only 14 percent of respondents felt that HIV-positive women should have children. Currently, medication exists that can prevent mother-to-child transmission of HIV.

One way to combat HIV/AIDS stigma is to make HIV testing routine, and the survey provided insights into public attitudes about testing. Nearly 40 percent were sure they had not been tested for HIV. A majority (80 percent) of these respondents indicated that they did not need a test either because they "knew" they did not have HIV or because they didn't think they needed to be tested.

However, respondents overwhelmingly supported expanded HIV testing with 65 percent believing that HIV testing should be part of routine healthcare. This acceptance may be partially linked to the belief that HIV testing occurs more frequently than it does, with 67 percent mistakenly assuming that they are automatically screened for HIV when they are tested for other sexually transmitted infections. Fifty percent mistakenly believed that women are automatically screened during prenatal exams.

Furthermore, in the minds of many people, AIDS in the United States is no longer a crisis. Complacency has obscured the changing face of the epidemic and the dramatic rise in HIV infection in women over the past 25 years. amfAR's survey results should serve as a wake-up call for action across all sectors of society. There is a critical need to intensify efforts for science-based education and policy to shatter the stigma that has surrounded this disease for all too long.

To address the public health concern of women and AIDS, amfAR, The Foundation for AIDS Research, has released a Ten-Point Call to Action highlighting the steps necessary to combat the pervasive stigma and improve the prevention, treatment, and care of HIV/AIDS in the female population.

amfAR's Ten-Point Call to Action on Women and HIV/AIDS [PDF] (2)

1. Make Women a Priority in National HIV/AIDS Strategies

A national HIV/AIDS strategy should guide and drive each country's response to the vulnerabilities and special needs of women in the context of HIV/AIDS. Countries with national strategies must ensure that policies are in place across all sectors to empower women, reduce their vulnerabilities to infection, and improve access to treatment and care. Moreover, national HIV/AIDS strategies must set clear targets for improving prevention and treatment outcomes through reliance on evidence-based programming. National strategies must also identify clear priorities for action across governmental agencies, including setting realistic and sustainable goals and requiring annual reporting on progress towards those goals. Such plans must promote gender equality and the human rights of women and girls, including ensuring education, economic security, and access to resources such as healthcare.

2. Increase Public Knowledge and Decrease Stigma and Discrimination

Governments and communities must take concrete steps to increase public knowledge about HIV/AIDS and to eradicate stigma and discrimination against HIV-positive women. Greater investment is needed in educational campaigns that not only provide the public with accurate information about the transmission and prevention of HIV, but that also address all aspects of HIV stigma. These awareness campaigns should promote a more supportive and empowering environment for women living with HIV/AIDS by countering negative stereotypes and discriminatory attitudes. In addition, governments and communities must also work toward eliminating the cultural, institutional, and structural conditions that fuel stigma and discrimination. The enactment, strengthening, and enforcement of legislation, regulations, and other measures to eliminate discrimination against people living with HIV/AIDS should be a top priority.

3. Increase Funding and Resources for Female-Focused HIV/AIDS Programs

Current HIV/AIDS programs often ignore the biological differences and the social, economic, and cultural inequities that make women more vulnerable to HIV/AIDS. Sex differences must be examined in the design, implementation, and evaluation of biomedical and behavioral research. Existing HIV/AIDS prevention, care, and treatment programs should be re-evaluated to ensure that they address the needs of women and include outcome measures that can accurately capture female-specific data. Additionally, all HIV/AIDS prevention initiatives should include components focusing on women's educational and economic empowerment, as well as increase access to health services and comprehensive, evidence-based HIV information.

4. Reduce Barriers Faced by Women in Disadvantaged Populations

Current HIV/AIDS programs and research not only ignore the needs of women in general but also fail to take into account the fact that the rise of HIV/AIDS among women has primarily affected those in disadvantaged populations. In the U.S., this trend has occurred primarily among women of color, while internationally women from ethnic minorities and other socially and economically disenfranchised groups have been affected. Whether in the U.S. or abroad, these women may face additional barriers to accessing HIV prevention, care, and treatment services.

Existing HIV/AIDS programs and research should be re-evaluated to ensure that they address the social, economic, cultural, and linguistic needs of women from disadvantaged populations. Additionally, emphasis should be placed on involving disadvantaged women in the planning, design, and implementation of HIV prevention programs, as well as involving more women of color in research studies. Recent studies demonstrate that investing in women and girls has a multiplier effect on productivity, efficiency, and sustained economic growth in communities and countries.

5. Increase Women's Access to HIV Testing and Counseling Services

HIV testing and knowledge of HIV status are important for both treatment and prevention efforts. Additionally, making HIV testing a routine part of healthcare could help reduce the stigma associated with both HIV testing and HIV infection. Routine HIV testing and counseling services should be made available whenever possible, while recognizing that these services need to be adapted to account for barriers particular to women, especially gender-based violence.

For many women, the fear or experience of violence influences the use of HIV testing services. It is important that this and other potential issues, such as limitations on women's autonomy and decision-making authority about healthcare, be addressed by HIV counseling and testing providers. Providers should train staff to assess female clients' risk of violence and link them with appropriate post-test support services. Expanded access to HIV testing and counseling must be accompanied by a simultaneous expansion of HIV prevention, treatment, and care services focused on women.

6. Increase Women's Access to Healthcare

Despite targeted programs and policies in the United States and abroad that have helped women lead healthier lives, significant gender-based health disparities remain. Globally, a lack of education, employment opportunities, and economic stability are significant barriers preventing women from accessing quality basic healthcare. In the United States., lack of adequate insurance and inability to pay for medical care impede women's access to health services. National, state, and local governments must implement policies to increase women's access to healthcare. These policies need to take into account women's disproportionately lower incomes, as well as their unique health needs and their role in negotiating not only their own care but also that of family members.

Policies are also needed to promote the sexual and reproductive health and rights of women and girls. For many women, reproductive health services -- which traditionally include family planning, maternal health and nutrition, and prevention and treatment of sexually transmitted infections (STIs) -- are the access point to the broader healthcare system. Women may also be more comfortable seeking services at a family planning clinic because of the stigma surrounding visits to HIV-only service providers. Integrating reproductive health and HIV services presents an opportunity to move HIV prevention forward by providing women with "one-stop shopping" for healthcare and comprehensive resources to prevent HIV/AIDS. Such facilities should also provide testing and treatment for STIs -- a known risk factor for HIV infection. Integrated services may also help improve care for HIV-positive women who are seeking family planning or maternal and child health services.

7. Invest in the Development of Female-Controlled Prevention Methods and Other Prevention Technologies

Currently, the only available female-initiated HIV prevention method is the female condom. However, female condoms are often underutilized by women who lack the ability to negotiate safe-sex practices with a partner. Promoting the acceptability and use of the female condom should be a component of HIV prevention strategies, but other, more "user-friendly" female-controlled methods of HIV prevention are urgently needed. The development of a prevention method that women could use discreetly to prevent sexual transmission of HIV (such as a topical microbicide or oral prophylaxis) would represent one of the most important advances in preventing HIV infection among women. Different formulations of microbicides will be necessary to prevent HIV and STIs, while accommodating women's preferences to prevent or permit conception. Additionally, more research is needed on other prevention technologies including vaccines and behavior change strategies.

8. Scale Up Prevention of Mother-to-Child-Transmission (PMTCT) Programs

In the U.S. and abroad, expanded availability of HIV screening programs and treatment to prevent perinatal transmission of HIV from mother to child has led to a steady decrease in the number of children living with HIV. However, despite these advances, less than nine percent of HIV-positive women worldwide have access to these services. In addition to preventing new infections in infants, PMTCT programs can provide other important services to women, including HIV testing and counseling, psychosocial support, and family planning services. Operations research is needed on how to optimally increase access to and uptake of PMTCT services. More research is also needed on other prevention technologies, including a vaccine.

9. Ensure Women's Sexual, Psychological, and Physical Safety

Violence continues to be a common, often ignored problem that increases a woman's risk for HIV and may prevent her from seeking the prevention, treatment, and care services she needs. National, state, and local governments must enact and enforce laws that protect women from violence. Implementation of these laws should be reinforced through training and education of civil servants, police, judiciary, healthcare workers, and clergy to assure that the links between HIV risk and violence against women are clearly understood. Increasing the number of violence prevention and intervention programs is another important measure. There is also a need for community-based programs that challenge traditional notions of masculinity and educate men, boys, and community leaders about the rights of women. All of these components should be integrated into countries' national HIV/AIDS strategies, as should an increased focus on expanding economic and support systems for women seeking to leave abusive situations. Furthermore, enhanced funding is urgently needed for violence prevention and intervention programs.

10. Increase Women's Rights, Empowerment and Involvement in Leadership

Ensuring women's and girls' rights and empowerment at all levels of society is crucial to eradicating HIV/AIDS and should be a top priority for governments and international donor agencies. National HIV/AIDS strategies should include components that seek to enhance women's economic status, secure women's property and inheritance rights, promote gender equality and the human rights of women, ensure education and economic security, and increase women's meaningful participation in civil society and governmental decision making. All of these factors are essential to ending the HIV/AIDS pandemic.

Summary

HIV/AIDS among women is an epidemic with multiple biological, social and environmental risk factors in the United States and globally. Eradicating this disease among women and girls is dependent on the combined efforts of political leaders, scientists, philanthropists, businesses, and individuals and importantly must strengthen women's empowerment, rights and role in societies worldwide.

*****

1. The online survey, conducted by Harris Interactive for amfAR, questioned nearly 5,000 respondents ages 18-44 and covered HIV risk and responsibility, impact of gender-based violence, and women's access to healthcare and health information, as well as attitudes towards HIV-positive women. The survey was made possible by grants from Broadway Cares /Equity Fights AIDS and the M•A•C AIDS Fund.

2. "amfAR Fact Sheet: Women and HIV/AIDS." amfAR, The Foundation for AIDS Research. 31 March 2008.

*Susan J. Blumenthal, M.D., M.P.A. is the Senior Policy and Medical Advisor at amfAR, The Foundation for AIDS Research in Washington D.C. She is also a Clinical Professor at Georgetown and Tufts University Schools of Medicine. For more than 20 years, Dr. Blumenthal served in health leadership positions in the Federal government, including as Assistant Surgeon General of the United States and the first Deputy Assistant Secretary of Women's Health in the U.S. Department of Health and Human Services, as Chief of the Behavioral Medicine and Basic Prevention Research Branch at the National Institutes of Health, and as a White House Advisor on health issues. Dr. Blumenthal has received numerous awards including honorary doctorates for her important contributions to improving health in the United States and globally. Her work has included a focus on HIV/AIDS since the beginning of the epidemic in the early 1980s.

Elisha Dunn-Georgiou, J.D., M.S., serves as the Legislative Analyst at amfAR, The Foundation for AIDS Research, in Washington D.C.

Melissa Shive, a Fulbright Scholar and a recent Honors graduate of the University of Pennsylvania, serves as a Research and Policy Assistant at amfAR,The Foundation for AIDS Research in Washington D.C..