Women and HIV
New Info (posted in 2004-05):
IMPORTANT: below was written in December 1998...
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
Yet for women, unfortunately, the
picture is not quite so hopeful.
- AIDS is the leading cause
of death among African American and Hispanic women ages
25-44 in the US.
- African American and Hispanic
women accounted for 76% of new AIDS cases among women
reported in 1996 in the US.
- Women are one of the fastest
growing groups of new AIDS cases, accounting for 20% of
newly reported cases in the US and 42% of new cases worldwide.
- In clinical research on
potential treatments, only 12% of research participants
- Women are 33% more likely
to die than men because treatment begins so much later,
if at all.
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
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.
WHAT are HIV and AIDS?
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.
How is HIV spread?
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.
How can I protect myself from HIV?
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.
[NOTE ADDED IN OCTOBER 2004:
Studies published in 2004 suggest the use of spermicides
may actually increase the risk of HIV/STI transmission in
women who have sex several times per day by irritating the
vaginal lining making it more vulnerable the passage of
the virus into her body. Spermicides vary in their irritability.]
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.
What is "at-risk" or "risk"
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.
What is an HIV test?
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.
When should a woman get an HIV test?
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.
If I decide to be tested for HIV,
what can I expect?
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 I test positive for HIV, what
should I do?
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
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
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.
What are the standard AIDS
treatments? Are they different for women?
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.
What about alternative or natural
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.
Aren't treatments expensive? How
do people afford them?
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.
What about pregnancy?
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
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+.
What about lesbians?
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.
Numbers Tell a Story...
- In the US, the Centers
for Disease Control (CDC) estimates that only two-thirds
of people with HIV know about their infection (7/97).
- The number of AIDS deaths
in Washington State was highest at 651 in 1994 and has
decreased steadily to 150 in January to November of 1997.
- In WA, there have been
8115 AIDS cases since 1982. On Nov. 30, 1997, there were
3246 known people living with AIDS, 287 of whom are women.
- AIDS is the 3rd
leading cause of death among women age 25-44 in the US.
- Every 20 seconds a new
HIV infection occurs in a woman somewhere in the world,
the majority in developing nations.
- Men who have sex with men
still account for the largest proportion of people living
with AIDS (48%), but the largest increase in AIDS prevalence
occurred in those who were infected heterosexually, men
(28% increase) and women (23% increase), 1996 compared
to 1995 nationally.
- From 95 to 96
in the US, the greatest proportionate increase in AIDS
occurred among African American and Hispanic men and women
- For the first time ever,
AIDS incidence (new AIDS diagnosis) decreased among
men by 8% from 1995 to 1996, but increased among
women by 2%.
Why Does HIV Affect Women Differently Than Men?
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
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 womens 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.
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 Testing and Medical Care"
Calls for Boosting AIDS Protection for Women"
the HIV Pandemic"
Asked Questions (FAQs) on HIV/AIDS
HIV/AIDS Resources in Washington
State and national - Organizations, clinics, care.
- dedicated to open direct communication about sex, condoms,
and safer sex.
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
Positive Life - Portraits of Women Living with HIV.
River Houston. 1997.
Public Health - Seattle & King County - GLBT
According to the Ms.
Foundation for Women, in 1999:
- Women in the USA are infected with HIV at a rate four
times greater than men.
- 51% of new AIDS cases among 13-19 year olds are
- 78% of women with AIDS in America are African-American
in women - a news
story written in October 2004.
Feminist Women's Health Center