For the First Time Ever AIDS Deaths Declined in the US

In the world of AIDS statistics, there is some spectacular good news! For the first time ever, in 1996, AIDS deaths in the US declined. Compared to 1995, death among men declined by 22%, BUT THE DECLINE IN DEATHS FOR WOMEN WAS 7% — SUBSTANTIALLY LESS.

New more powerful HIV therapies and successful prevention of opportunistic infections have brought about a transformation in AIDS care. People with AIDS are living longer more healthful lives! For males, the outreach and education programs of the past 15 years, plus research into new therapies, have decreased the death rate, slowed progression from HIV to AIDS, and reduced the number of new AIDS diagnoses.

There are complex economic and social reasons why fewer women access AIDS care. One reason is that programs designed in the early years of the AIDS epidemic targeted gay men. As a result, women don't know as much about available services and treatments. A second reason is that doctors and clinics sometimes fail to recognize the early symptoms of HIV in women. A third reason is that women are busy taking care of families, parents, and everyone else first. Delaying treatment can cost women their lives because early treatment makes such a difference in longevity.

For women, injection drug use (34%) and heterosexual sex (40%) have been the primary modes of HIV exposure. A growing trend is the number of women becoming infected by male partners who had sex with males or had sex with needle-sharers.

Successive waves of young women are becoming infected as they reach young adulthood and begin sexual activity, generally with older men. Older women are not immune. People at any age are at risk if they engage in risky behaviors such as unprotected sex or needle-sharing with an infected partner.

What women need to know about HIV is the theme of this newsletter. Because ‘knowledge is power’ we provide lots of details and further resources.

HIV, Human Immunodeficiency Virus was first recognized as a virus infecting humans in 1981. Although the origin of HIV is uncertain, monkeys in Africa also test positive. HIV attacks the human immune system so that, over time, the body has less and less ability to fight off infectious diseases. A person has AIDS, Acquired Immunodeficiency Syndrome, when their immune response gets damaged and their body cannot resist diseases. HIV causes AIDS. Inability to resist opportunistic infections or diseases such as cancer is the actual cause of death of most AIDS victims.

There is a 3-6 month time lag between when a person becomes infected with HIV and when antibodies in their system can be detected by a blood test. Once a person becomes infected, they are an HIV carrier for life. They can infect another person at any time, even before they test positive. AIDS is a fatal disease. Today there is no cure. However, with treatment, good nutrition, and strong support systems, many people are living long healthy lives. People with HIV may look and feel healthy for 10 years or more after they become infected. But, they must be on guard: infections that can be deadly to an HIV+ person are the same infections everyone is exposed to regularly, sometimes daily.

HIV is carried in blood and bloodborne body secretions (semen, vaginal secretions, breast milk). It is passed from person to person through sex (vaginal, anal, or oral sex), sharing drug needles, and breast-feeding. In the 1980's, the virus was also transmitted by blood transfusions. Today, all blood banks test blood products and acquiring HIV through transfusions is quite rare.

HIV is NOT spread through handshakes, coughs, sneezes, sweat, tears, food, mosquitoes or other insects, swimming pools, toilet seats, phones, computers, drinking fountains, sharing cups or silverware or open-mouth kissing. You cannot get HIV from giving blood. In the US, equipment to draw blood in hospitals, clinics, or blood donation programs is new and sterile.

Do not allow anyone else's blood, semen or vaginal secretions into your body. Use safer sex to prevent the spread from person to person. Safer sex involves creating a barrier between bodies using a latex condom, dental dam, or plastic wrap. The addition of the chemicals Nonoxynol-9 in spermicidal jelly, cream or foam makes vaginal sex safer, protects against other sexually transmitted disease (STDs), and prevents pregnancy, but spermicides alone do not protect against HIV. The best way to use safer sex techniques is to make them part of the fun of lovemaking.

Always use a female or male condom, dental dam, glove, or plastic wrap for sexual contact involving sperm, vaginal secretions, or blood. Never share needles or syringes for shooting or skin-popping drugs. Never use a used needle or syringe.

To prevent HIV, condoms must be made of latex. They must be put on before any genital contact. Use a new one each time for vaginal, anal or oral sex. Never use oil based lubricants, like Vaseline, because it literally eats tiny holes in the condom.

Fortunately, condoms are inexpensive and easily obtained in a convenience store, grocery or pharmacy. To receive a free safer sex kit in the mail, call Michelle at 1-800-572-4223 x322 with your name and address. Or ask for one from the clinic staff when you are here for an appointment.

At risk means activities most likely to transmit HIV: that is blood/blood contact or blood/semen contact. Anyone who shares needles is at risk. Both males and females are at risk if they have numerous sexual partners, because it's impossible to know who their partners had sex with or shared needles with. Anal sex is more likely to transmit HIV because the walls are thin and tear easily, whereas the walls of the vagina are thick and stretch. However, a woman may have small sores or lesions caused by STDs or sex play that could provide blood contact.

Testing for HIV is really testing for antibodies to HIV. If you are infected with HIV, your body creates antibodies in response to the HIV in your system. There are two separate HIV tests that are performed on one blood sample. ELISA is a very sensitive test, but it can confuse other proteins for HIV antibodies. Therefore, all positive ELISA samples are immediately re-tested with a Western Blot test. It is possible to get an inconclusive result, which means the test should be performed again in 3 months.

If a woman has engaged in risky behaviors and experiences illnesses that recur or don't respond to treatment, it may signal a weakened immune system. Such symptoms may be persistent vaginal yeast, weight loss, fatigue, cervical dysplasia or cancer, pelvic inflammatory disease, swollen glands, toxoplasmosis, human papiloma virus (genital warts), and pneumocystis carinii pneumonia. Health care providers should recognize these symptoms and ask a woman about risky behaviors then decide together about testing for HIV.

The test can be either anonymous or confidential. Confidential means you use your name, and as with other medical procedures, the information is confidential. However, if you use insurance, HMO, or other health plan to pay for the test, the results will become part of your permanent medical record and the insurer or health plan will have access to it. Anonymous means you pick a pseudonym or are assigned a number, and the results do not go into your medical record, nor are they traceable to you.

To get tested, you may go to your regular health care provider, an AIDS clinic, public health office, FWHC clinics, or any hospital. At the clinic, you meet with a counselor to assess your risk of exposure, explain the test, decide if it is anonymous or confidential, and discuss outcomes. A small sample of your blood is drawn and sent to a laboratory where the test is performed. About 2 weeks later, the results should be ready. Results are not given over the phone; you must go to the clinic. If you test positive, the clinic will provide resources for further healthcare and follow up. If you test negative, there may still be a chance you were exposed to HIV, but your body has not yet started making antibodies. To be sure, you may wish to be re-tested in about 12 weeks.

If you test positive for HIV, the best thing you can do is to build a support system of people and caregivers who understand HIV and can give you good information and support. Connect with local AIDS service agencies. Their purpose is to make sure you don't have to face AIDS alone. There are thousands of people who are currently HIV+. Their knowledge about living with HIV can help you.

Find a doctor who specializes in AIDS care and who you like. Depending on your health status, you may begin therapies right away to help you fight infections and diseases.

You will need to tell your recent sex or drug-using partners that they may have been exposed to HIV. They should get an HIV test themselves. If you prefer to be anonymous, the public health department will tell them without any reference to you. Beginning that day, always use safer sex practices.

Take charge of your health. Find out all you can about living with HIV and staying healthy. Eat healthful foods to keep your immune system strong. Stay away from drugs, alcohol, caffeine and cigarettes. Also avoid raw eggs, raw seafood and undercooked meat. HIV+ women should get regular pelvic exams. Don't neglect dental health. Avoid animal droppings in cat boxes, birdcages, aquariums and so forth.

Don't cut yourself off from life, family, and friends. Laugh, a lot. It's good for the immune system. Use this as an opportunity to grow in new ways.

Unless a woman is pregnant, the treatment options do not vary much between men and women. Future clinical research will evaluate the different effects in men and women, but for now, little is known about the difference. Early detection and treatment greatly improves the quality of life and chance of long-term survival.

AZT is the drug most people have heard about. Today, AZT is used in combination with a variety of other drugs. Anti-retroviral therapy (ART) calls for triple combination therapy with two reverse transcriptase inhibitors and one protease inhibitor. Whew! Not surprisingly, many women (and men) feel intimidated by a discussion of AIDS therapies. Again, it really helps to be part of a support group with other HIV+ people.

The combination therapies are complex, involving a rigorous schedule of up to 40 or more pills per day. Each dose must be taken on a strict schedule. Some go with food, others need a certain time interval between pills or before or after food. Some women find it difficult to keep the demanding pill schedule due to family obligations or other responsibilities.

Many women with HIV report unusual gynecologic symptoms that seem to be hormone-influenced. Post-menopausal women seem to be less bothered by side effects from the drugs. Answers are needed to questions about how hormones affect HIV or vice versa, including effects of oral contraceptives, hormone replacement therapy, and pregnancy, as well as how hormones interact with AIDS therapies.

Herbal remedies, naturopathy, homeopathy, acupuncture, spiritual work, massage, nutrition, and Chinese medicine offer alternative immune-enhancing therapies. Finding a practitioner with knowledge of immune function is key. Alternative therapies may also help with drug side effects.

As with other life-threatening diseases such as cancer, attitude plays a significant role in feeling healthy. The mind-body connection can be utilized to strengthen health.

Research is currently underway at Bastyr University in Seattle surveying alternative treatments for AIDS. Call Bastyr at 206-523-9585. See other resources on page 7.

More than half of people with AIDS in the US qualify for Medicaid assistance to fully or partially cover the cost of all medications and doctor visits. In addition, for people with AIDS who cannot work, welfare, social security and other financial assistance are available. Several treatment programs and services assist people with AIDS regardless of their ability to pay.

For HIV+ women who are pregnant or considering pregnancy, there is about 1 in 4 chance of passing the virus on to the fetus. This chance can be reduced to 1 in 12 if the woman takes specific drug therapies to reduce transmission. This is one reason why it is important for HIV+ pregnant women to have fast access to a knowledgeable health care provider.

Because of the success of the above mentioned treatments, the Washington Dept of Health recommends that ALL pregnant women be tested for HIV so they can make early decisions about treatment to prevent transmission. In the US about 6500 HIV+ women become pregnant and give birth annually. Only about 25% of the babies are HIV+.

Female-to-female transmission is rare. However, the known cases of female-to-male transmission indicates vaginal secretions and menstrual blood are potentially infectious. Use safer sex to prevent oral or vaginal contact with vaginal secretions and menstrual blood.

Researched in 1998 by Joan S., webweaver, using information from the national resources listed on page 7. Statistics from 1996 & 1997 CDC reports.

A decade ago women seemed to be on the periphery of the AIDS epidemic. Today they are at the center of concern. The World Health Organization estimates that, worldwide, almost half of all newly infected adults are women. One woman is infected with HIV every 20 seconds throughout the world. In the US, women accounted for 20% of newly diagnosed AIDS cases reported to the Centers for Disease Control during 1996, up from 7% of cases reported in 1985. AIDS is the leading cause of death among African American and Hispanic women ages 25-44. Women are asking why HIV is affecting women differently than men?

In virtually every society, women face discrimination in education, employment, and social status, resulting in economic vulnerability to HIV/AIDS. The bleak reality is that the sexual and economic subordination of women fuels the HIV/AIDS pandemic. Political commitment is needed to reduce the social vulnerability of women to HIV infection by improving their health, education, legal and economic prospects. Effective HIV/AIDS prevention and care services targeting women, especially women of color, must be developed and integrated into existing structures.

In the Seattle area, one such service is The BABES Network. BABES, as it is known, was established in 1989 and became an independent nonprofit in 1997. Its mission is to provide peer support services to women with HIV and AIDS. BABES meets its mission by offering support groups, retreats, and counseling services. BABES is a small organization, with 4 staff members, the majority of whom are women living with HIV. BABES serves about 180 women statewide, ages 12 to 67. Through BABES, women in Seattle and the Puget Sound area can form alliances with each other for support. BABES also helps educate the community about the special needs and concerns of women living with HIV and AIDS. "The name," explains Jesse Chipps, the Executive Director of BABES, "was a little joke. People think of men when they think of HIV. We wanted a way to be identified that was different. So we started calling ourselves ‘Babes with AIDS.’" Contact Babes at 206-720-4377.

The route of HIV transmission to women is overwhelmingly through heterosexual intercourse. AIDS is essentially a sexually transmitted disease, which like some other STDs can also be spread through blood and blood products, and from an infected woman to her fetus or newborn. Studies show that male-to-female transmission of HIV appears to be 24 times more efficient than female-to-male transmission. STDs that cause ulcerative lesions greatly increase both the acquisition and transmission of HIV. However, in women, STDs often have no symptoms and are therefore unrecognized.

Many people assume that if a woman is HIV positive, she has had multiple partners, is an intravenous drug user, or engaged in prostitution. Socially, women have always been more vulnerable to being labeled and stigmatized based upon assumptions about their reputation. Tragically, because of the social stigmas associated with HIV, women known or thought to be infected have been dismissed from their jobs or not hired, evicted from their homes, abandoned by their husbands or other long term partners, and denied the custody of their children.

In many countries, 60% of all new HIV infections are among 15-24 year olds, with a female to male ratio of two to one. Power differentials between men and women, supported by social and cultural systems, make it difficult for women to take preventive safer sex measures. In some cultures, women do not have permission to talk about sex with men, much less negotiate safer sex practices. To do so may have serious repercussions, ranging from stigma, to violence, to abandonment. Male resistance to condom use and women's inability to negotiate safer sex puts women at greater risk of HIV infection.

Within marriage, or other long-term relationships, the very suggestion of condom use carries with it an indication of infidelity or other behavior that could threaten the security of the relationship, making it difficult for both men and women to introduce condoms into an existing relationship. Women are also vulnerable to coerced sex, including rape and other sexual abuse, in and outside of the family, and forced sex work. Any nonconsensual penetrative sex can carry an increased risk of transmission of HIV and other STDs.

HIV transmission can occur during pregnancy, childbirth, or as a result of breast-feeding. Unfortunately, some HIV+ women are pressured not to become pregnant, to be sterilized, or if they are already pregnant, to terminate their pregnancies. Yet, in the US, only about one fourth of babies born to seropositive mothers are seropositive.

In the early years of AIDS, the research and medical data collected were based upon males. But HIV infection and AIDS exhibits itself differently in women than in men. Only recently, in 1993, did the Center for Disease Control (CDC) begin to alter the list of AIDS-defining conditions to include infections and diseases specific to women. Women with HIV infection are likely to experience chronic vaginal yeast infections, cervical dysplasia and cancer, and pelvic inflammatory disease. Women rarely experience one of the most common male opportunistic infections - kaposi sarcoma, a rare form of skin cancer.

In research about treatments for AIDS, concern was raised about the appropriateness of inferring medication dosage for women from studies conducted largely in men. Thus far, the newer medications, called protease inhibitors, have equivalent efficacy in women and men. However, the number of women in most publicly and privately funded studies of therapeutic agents was small.

New opportunities now exist to reduce the morbidity and mortality of HIV disease in women through early detection, treatment and continued research. Studies must be done to identify the nature and rate
of disease progression in women and to assess the effects of various therapies on women. Investigations must also continue into woman-controlled contraceptives that protect against HIV transmission.

Furthermore, research is needed regarding the influence drug therapies on menstrual cycles, as women with AIDS are reporting significant changes. Policies and programs must also address comprehensive education and health care to inform women about treatment options and improve their early access to medical care.

Women with AIDS need access to such basic information as knowing that pneumonia, still the leading cause of AIDS-related deaths among women, can be prevented with an inexpensive antibiotic. Another challenge in improving women’s access to services lies in addressing issues of child care, transportation, disclosure, and confidentiality.

Researched and written by Lauren Simonds, MSW, who was Clinic Manager at Cedar River Clinic at the time she wrote this article. Lauren previously worked at Pierce County AIDS Foundation and is a former co-president of the Board of The Babes Network. The above article was published in the Winter 1998 issue of Voices for Choice, the newsletter of the Feminist Women's Health Center.

UNAIDS Agenda for Action. Journal of the American Medical Association, AIDS in Women in the US, 9/17/97. Journal of the American Medical Association, Clinical Developments: Report from the National Conference on Women and HIV, May 4-7, 1997

Violence Against Women & HIV/AIDS: Specific attention must be paid to the issue of gender-based violence in order to effectively deal with the current HIV/AIDS crisis. Currently, there is a growing body of research calling attention to the connection between violence against women and HIV/AIDS. Violence, and the fear of violence, hinders women's ability to prevent transmission of the virus and compromises their access to a range of services, including testing and treatment. Women also often experience further violence once they are or are perceived to be infected.

HIV/AIDS Resources in Washington State and national - Organizations, clinics, care.

SaferSex.org - dedicated to open direct communication about sex, condoms, and safer sex.

"Treat Yourself Right: Info for Women with HIV and AIDS" - booklet to assist women with HIV to manage their individual health and lifestyle issues. Put together with the assistance and support of a number of HIV positive women from around Australia. It is a resource for newly diagnosed women, women who have been living with the virus for sometime and people working in the area of care and support for people living with HIV/AIDS.