"Women Living Positive" Survey Shows Communication Gap between HIV Positive Women and their Doctors

A recent survey of 700 HIV positive women in the U.S. showed that almost 75% struggle to manage their daily lives. The survey was supported by Boehringer Ingelheim Pharmaceuticals and developed in collaboration with The Well Project, a non-profit organization for women affected by HIV.

All the women surveyed were diagnosed with HIV/AIDS, were at least 21 years old, and had been on antiretroviral treatment for 3 or more years.

Following is an excerpt of an announcement from Boehringer Ingelheim describing the survey results:

Most Women with HIV and Their Health Care Providers Have Not Discussed How HIV Might Affect Them Differently than Men

New findings from the Women Living Positive survey show a communication gap between women living with HIV and their health care providers when it comes to having important discussions about HIV treatment options that meet their individual needs.

More than half of the women surveyed (55%) say they have never discussed with their health care provider how HIV medications might affect women differently than men. However, the survey also shows that, of the 45% who did have this discussion, a majority reported that their health care provider answered questions to their satisfaction and made them feel comfortable discussing the issue (96% and 95%, respectively).

There are now an estimated 300,000 women in the United States living with HIV/AIDS [1]. African-American and Hispanic women make up a combined 24% of the U.S. female population, yet their communities shouldered an estimated 79% of the burden of HIV/AIDS cases among women in 2005 [2]. In addition, each year more than 6,000 HIV-positive women in the United States give birth [3].

“With the rise of HIV infections in women [4], it is important to understand their struggles and unique issues when evaluating their care and treatment options,” says Kathleen Squires, M.D., Director of Infectious Diseases and Environmental Medicine at Thomas Jefferson University Hospital and Professor of Medicine at Jefferson Medical College.

“Women living with HIV need to work with their health care provider to discuss important topics including their emotional well-being, family planning considerations and care that best meets their health history and lifestyle."

The majority of women diagnosed with HIV in the United States are of childbearing age [5]. The survey shows many HIV-positive women and their health care providers aren’t discussing how HIV treatment options might affect a pregnancy until after they conceive. Most women surveyed who are or have been pregnant (57%) did not discuss pregnancy and appropriate HIV treatments for pregnancy with their health care provider before becoming pregnant.

In addition, a majority of HIV-positive women surveyed report that daily life is a struggle. Approximately three quarters (73%) of respondents indicated that living with HIV has caused them to struggle a “great deal” or “somewhat” in managing their daily lives, and 60% say living with HIV has made their daily chores and activities more difficult.

“The Women Living Positive survey concludes that there is a communication gap between women and their health care providers when discussing HIV treatment options appropriate for them,” says Dawn Averitt Bridge, founder and Chair of the Board of The Well Project, a non-profit organization for women affected by HIV, and an HIV-positive mother.

“We hope the survey findings will encourage discussion between women and their health care providers about HIV medications that best meet their individual needs. The good news is the survey found that, when these types of conversations happened, the majority of women were satisfied and comfortable with the experience.”

Additional Survey Findings

Nearly all HIV-positive women surveyed say long-term success with medications and the ability to live a normal life is “essential” or “very important” when deciding on HIV treatment options. Many women also report that HIV affects their ability to care for their families and many report experiencing symptoms commonly associated with depression. More than one-quarter of women surveyed (27%) have often experienced five or more symptoms commonly associated with depression (e.g., changes in sleep patterns, loss of energy, unexplained aches or pains, and feelings of sadness).

More than half of respondents (52%) identify themselves as caregivers. Forty-three percent of women surveyed feel that living with HIV has made taking care of their families “much more,” or “somewhat more,” difficult.

A majority of women surveyed (59%) feel that their culture, ethnicity or language impacts the care they receive either “a little” (21%) or “a lot” (38%). Hispanic

(70%) and African-American (61%) women are more likely than Caucasian (37%) women to feel that these factors impact their care.

For more information about the Women Living Positive survey, please visit www.thewellproject.org. The site also provides comprehensive information about HIV and provides tools and resources for women living with the disease in English and in Spanish.

In addition to the issues discussed above, there are other important topics for HIV positive women to discuss with their health care provider. These may include cardiovascular disease, diabetes, and other chronic medical conditions.

Survey Methodology

The Women Living Positive survey was conducted via phone by GfK Roper Public Affairs between December 21, 2006 and March 14, 2007. Interviews were conducted with a total of 700 U.S. women, aged 21 and over, diagnosed with HIV/AIDS and on HIV treatment for three or more years. The women interviewed were part of three ethnic/racial groups – African-American, Caucasian and Hispanic.

Interviews were conducted in both Spanish and English. Figures for race/ethnicity and region were weighted where necessary to align with the Centers for Disease Control and Prevention (CDC) demographics data for adult HIV-positive women in the United States. Differences between the survey subgroups were tested at a 95% confidence level.

About The Well Project

The Well Project is a non-profit organization dedicated to changing the course of the AIDS pandemic by bridging research, resources and relationships to help women with HIV and AIDS live positively. Conceived and developed by HIV positive women and those who care for them, The Well Project addresses three critical gaps in the HIV/AIDS arena for women: information access; treatment research; and community support.

The Well Project provides easy-to-understand, current and multi-lingual information and educational resources through its Web portal (www.thewellproject.org); accelerates research on women and HIV/AIDS through its dynamic research group, the Women’s Research Initiative; and builds peer support networks via the National Positive Women’s Training Initiative in communities most affected by HIV/AIDS.

About Boehringer Ingelheim

Boehringer Ingelheim Pharmaceuticals, Inc., (Ridgefield, CT) is a research-driven company dedicated to researching, developing, manufacturing and marketing pharmaceuticals that improve health and quality of life. Boehringer Ingelheim is committed to the research and development of novel antiretroviral agents and to improving HIV therapy by providing physicians and patients with innovative antiretroviral drugs. For more information please visit http://us.boehringer-ingelheim.com

10/12/07

Source

Boehringer Ingelheim. Most Women with HIV and Their Health Care Providers Have Not Discussed How HIV Might Affect Them Differently Than Men. Press Release. October 10, 2007.

References

1. The Henry J. Kaiser Family Foundation. HIV/AIDS Policy Fact Sheet: Women and HIV/AIDS in the United States.

2. CDC. HIV/AIDS Fact Sheet: HIV/AIDS among Women. June 2007.

3. CDC. Pregnancy and Childbirth - May 17, 2007. January 2005. Accessed 4 June 2007.

4. CDC. HIV/AIDS Surveillance in Women: Estimated Number and Proportion of AIDS Cases among Female Adults and Adolescents 1985-2005-United States and Dependent Areas. March 16, 2007. Accessed 24 May 2007.

5. CDC. Cases of HIV infection and AIDS in the United States, by race/ethnicity, 2000-2004. HIV/AIDS Surveillance Supplemental Report 2006; 12(No.1):1-36. Accessed 24 May 2007.