The most recent CDC figures tell a story of women and HIV/AIDS: In 2012 women accounted for twenty-five percent (7,949) of the estimated 32,052 AIDS diagnoses and represented twenty percent (232,902) of the 1,155,792 cumulative AIDS diagnoses in the United States from the beginning of the epidemic to the end of 2011.
The Joint United Nations Programme on HIV and AIDS (UNAIDS) also has some startling statistics: Women account for one in five new HIV diagnoses and deaths caused by AIDS, and the proportion of AIDS diagnoses reported among women has more than tripled since 1985.
Worldwide, the risk for women is even greater: Women constitute more than half of all people living with HIV/AIDS, and among people aged fifteen to twenty-four, the HIV prevalence rate for young women is twice that of young men. HIV is the leading cause of death for African-American women aged twenty-five to forty-four and the sixth-leading cause of death for all American women in this age group. In sub-Saharan Africa, women constitute fifty-seven percent of all people living with HIV/AIDS.
But in the minds of many, especially in the U.S., HIV is still a male disease and few are receiving—or sending—the message that women are vulnerable to HIV/AIDS. And funding for prevention and outreach, already sparse for women and girls, has been cut in recent years, putting an already vulnerable population at greater risk.
But some are sounding the alarm to women and their care providers. Whether their voices will have an impact on a greater scale remains to be seen.
Concerns of women
In many ways HIV is different for women, for medical and sociological reasons.
The biological differences include:
• Transmission rates. Unprotected vaginal sex is a much higher risk for HIV for women than for men.
• Genital warts and yeast infections.
• A high correlation with more serious diseases like cervical cancer.
Complex sociological distinctions include:
• Barriers to medical care and treatment, and often worse quality of care.
• Cultural expectations and domestic violence make women more vulnerable to HIV infection.
• Socio-economic factors. Women with HIV are more likely to be poor and of color.
In the U.S. most women, even if they know about how to protect against HIV, don’t believe they are in a risk category. Most women don’t even know they have HIV until they get an opportunistic infection, and by then they’ve the disease has progressed to a later stage, according to the U.S. government’s Office of Women’s Health. That creates a huge treatment hurdle, because antiretroviral treatment (ART) leads to the best outcomes when it is started early. Recent studies have shown that once the viral load spikes, HIV does a lot of damage to the body that may not be reversible, even after ART begins to bring the load down.
The biological effects
Because HIV affects the immune system, it can set the body at war with itself and leave an infected person susceptible to a variety of opportunistic infections. In addition, women with HIV are more likely to have gynecological issues, including:
• Cervical dysplasia
• Anal/Rectal dysplasia
• Invasive cervical cancer
• Extensive herpes simplex 2
• Recurrent yeast infections (vaginal candidiasis)
• Recurrent genital warts
Cervical dysplasia, while not a disease, is a marker for much more serious complications. It’s caused by certain strains of the human papillomavirus (HPV) and HPV can cause cells on the cervix to mutate, and possibly, over time, turn into cancer cells.
While all women are vulnerable to cervical cancer, it has long been thought that risk of cervical cancer increases with HIV because the immune system is weaker and less able to fight HPV infection. Invasive cervical cancer is considered an AIDS-defining diagnosis for women.
But last year, a major study questioned the assumption that HIV increases a woman’s risk of cervical cancer and suggested that the high correlation between HIV and HCV might be just that; correlation and not causation.
The Women’s Interagency HIV Study (WIHS) study, whose results appeared in the July 25, 2012 issue of the Journal of the American Medical Association, looked at 420 HIV-infected women and 279 women without HIV infection who had normal cervical cytology (cell structure and function) at enrollment. The women were seen at semi-annual visits at six clinics between 2002 and 2011. Biopsies were performed if Pap testing determined abnormal cytology.
The authors reported that no oncogenic (containing a gene known to cause cancer) HPV was detected in eighty-eight percent of the HIV-infected women and ninety-one percent of the women without HIV with normal cervical cytology enrollment. The authors cautioned against applying the results to the general public, saying additional studies should be done before clinical guideline committees consider whether to expand current recommendations regarding HPV co-testing to HIV-infected women.
More broadly, the authors believe that new kinds of molecular testing, including HPV as well as other biomarkers, would improve cervical cancer screening in HIV-infected women.
Nevertheless, experts agree that all women, regardless of their HIV status, should get regular check-ups, including a pelvic exam and a Pap test, to check for HPV and cervical dysplasia—which often don’t have any symptoms—as well as other gynecological issues. CDC screening guidelines for women over thirty years-old without HIV have recently been revised with a suggested interval of three to five years between Pap tests.
Dr. Edmund Tramont, Associate Director of Special Projects, Division of Clinical Research, National Institute of Allergy and Infectious Diseases at the National Institutes of Health, believes that the high correlation between HIV and HPV is about sex.
“We know cervical cancer is almost exclusively caused by HPV, and we know that there’s a high correlation of HIV and all other STDs including HPV. So we have to conclude that when women have unprotected sex they’re putting themselves at risk of being dually infected with HIV and HPV, as well as putting themselves at risk of contracting other STDs.”
Of course some women do use IV drugs and some of those women do get HIV. But experts agree that sex is the greater HIV risk factor.
There are several reasons why unprotected heterosexual sex has been an intractable problem in the fight against HIV for women. According to the U.S. Centers for Disease Control and Prevention (CDC), most American women with HIV were infected by having unprotected sex with an infected injection drug user, while about one-quarter contracted the virus by sharing needles with an infected injection drug user.
It’s been well known for decades that condoms are effective in preventing transmission of HIV, and yet the virus is still spreading through unprotected sex—both to men who have sex with men (MSM), and women who have sex with men.
As with MSMs, women are often unaware of their partner’s risk factors for HIV. However, in contrast to many MSMs, and certainly gay-identified men, women are more reluctant to insist on condom use because they fear that their partner will leave them or even physically abuse them, experts say.
“Most HIV prevention tools are men-specific and rely on women to demand them,” says L. Nyrobi Moss, a health education program consultant at Sister Love, Inc., a women’s HIV/AIDS prevention and support organization, and Chief Operating Officer of ANIZ, Inc., a multicultural Atlanta-based HIV/AIDS education and prevention organization.
“Usually women don’t even want to start the condom conversation,” Moss adds.
Moss believes women from communities of color face additional risk, and points to the most recent statistics showing that African-American women have an HIV prevalence rate nearly four times that of white women.
Moss believes several cultural misconceptions keep women in general, and black women specifically, from advocating for their safety:
• Stigma of safer sex tools. The idea is if you’re asking for protection then you’re saying someone must have been doing something risky.
• “I’m monogamous with him, and I love him; therefore he surely must be monogamous with me.”
• “If I insist on a condom and he doesn’t want it, he’ll find someone else.”
“There are too many cases where a woman may be married but doesn’t know where her husband’s been,” Moss says. “And many times she’s afraid to find out.”
Traditional black churches play a role too, as they do with men who have sex with men, Moss says. Conservative churches’ abstinence-until-marriage policy, whether spoken or merely understood, plus the stigma of disease, lead to an environment where sex and the risk of disease are not discussed openly.
“I’ve seen three generations of a family—grandmother, mother, and child—all with HIV,” Moss says. “And I say ‘how is it possible you’re not talking about this?’”
Additional risk factors for women are lack of education, substance abuse, and the threat of domestic violence, according to Sylvia Young, program manager of direct services at Women Organized to Respond to Life-threatening Diseases (WORLD).
What would help turn around these beliefs and misconceptions is more extensive outreach to the most at-risk communities, Young says.
“The gay community has done a good job of promoting condom use, but there’s not enough women who have sex with men who are telling other women [to use condoms],” Young said. “In the beginning of the HIV/AIDS crisis, all the money went to white, gay men, but even now that money has flowed to men of color who have sex with men, there’s still not enough for education and outreach for women.”
Limited money for women’s outreach
Funding was an issue for municipalities across the U.S. before the federal budget cuts known as sequestration took effect in March. Now, cities are scrambling to backfill millions of dollars of sequestration-related cuts to Ryan White Part D (dealing with women and children) at a time when many are still in the red.
Even before the cuts, groups like WORLD were stretched thin, without adequate resources to hire HIV prevention education teams for schools; personal care representatives to encourage HIV-positive people to get into care, understand treatment options and stay on a regimen; and teams to identify and understand gaps in care and retention (using the Gardner-Cascade model). According to the Henry J. Kaiser Family Foundation, most people with HIV in the U.S. need more than primary care and a prescription drug benefit to remain engaged in care.
“If you have 300 people diagnosed with HIV, 270 are given meds, 100 are taking the meds, what happened to the others?” Young says. “Many people drop out of care, and we have to find them and bring them back.”
All of that work takes bodies, and money. Young says California has been especially hard hit by cuts to education and prevention funds, partly because many of the federal dollars have been redirected to the south, where the HIV seroconversion rate is much higher, and due to cuts from the California Office of AIDS. “The cuts were big, but the money is starting to come back, slowly.”
Collaboration with other groups helps, but, then, many other service organizations are strapped for funds as well.
The Obamacare effect
Come January, the Affordable Care Act (“Obamacare”) is expected to benefit many Americans infected with HIV through the expansion of Medicaid programs in states that opt in. In those states—twenty-five plus the District of Columbia—Medicaid funds will cover about sixty percent of the mostly uninsured patients currently receiving help from federal and state HIV programs. And it will cover all of their health needs, not just HIV treatments. That’s good news, because most HIV infected people need comprehensive care in order to benefit from meds (and many are co-infected with hepatitis C or other diseases).
But there are some unknowns coming with Obamacare, and possibly some unintended consequences. State-run Ryan White programs that provide health care and other services for HIV-infected residents are expecting to change the type of benefits they offer and possibly the level of future investment. At issue is what the ACA exchange and Medicaid can cover, and what can and should be covered by Ryan White. And some are even questioning whether Ryan White programs even need to exist.
The re-thinking of Ryan White has HIV/AIDS organizations like WORLD, Sister Love and ANIZ worried. It’s not yet clear whether coverage gaps will improve or worsen as states interpret the ACA’s mandates.
“Now that the DHS considers HIV/AIDS to be a manageable disease like diabetes, will the funding for HIV outreach be cut back even more?” Young asks. “We hope not but we think it will.”
To complicate matters, half the states at the moment have opted not to take Federal money to expand Medicaid in their states. Most of these states have Republican Governors and legislatures, and most are in the South. That’s a big concern for HIV advocates because it’s those states that could benefit from the Medicaid dollars the most. Louisiana, Florida, Georgia, Mississippi, and Texas are among the top 10 states with the highest concentration of HIV diagnoses, and none are expanding Medicaid as part of the ACA. Those states could opt-in at a later date.
Even if the ACA ultimately ushers in the best possible scenario—expanded coverage for all, more affordable meds, closing of coverage gaps, and no elimination of necessary Ryan White programs—the situation for women with HIV and at risk for HIV will remain the same: far down on the priority list.
“The overwhelming majority of the Federal dollars for prevention and outreach and education is going to men who have sex with men,” Sylvia White tells A&U. “Unless it’s no longer considered just a penis disease, that’s not going to change.”
Larry Buhl writes A&U’s monthly Hep Talk column.