|
|
Are You Getting Good Medical
Care?
By Debra Johnson, N.P., P.A.-C.
and Kathleen E. Squires, M.D.
|
 |
|
The beginning of the AIDS
epidemic in the United States was presented as a disease that
was primarily transmitted by men who have sex with men (MSM),
and intravenous drug abusers (IVDA). In fact, women were essentially
excluded from an AIDS defining diagnosis until 1993 when a
CD4 T-cell count less than 200 cells/mm3, or a CD4 T-cell
percentage of less than 14 and/or invasive cervical carcinoma
became recognized (after years of community activism and pressure
on the CDC). In 1995 greater than 59% of the women were diagnosed
based on the addition of the new inclusion criteria added
in 1993. As the faces of AIDS continues to change, with women
representing more than 42% of the total cases reported in
1999, it would stand to reason that the health care system
that had been developed to deliver clinical care services
for men needs to redirect their care towards the specific
needs of women.
This article would not be
complete without a statement about how little is known regarding
women who are infected with HIV disease. After 1993, the Food
and Drug Administration (FDA) mandated the inclusion of women
in Phase I clinical trials. Prior to the mandate most women
were excluded from clinical trial participation because of
their ability to reproduce. Currently women comprise less
than 24% of the participants in clinical trials, therefore
most of the data that is currently available continues to
be gleaned from men.
Be an Advocate
Women activists need to continue
their work with researchers to provide community input and
direction towards the common goal of improving the quality
and level of care that women who are HIV infected receive.
Most of the data currently
available would suggest that a large disparity exists in access
to health care for women. Women are traditionally the caregivers
in the home, providing care for an infected spouse and/or
children, and thus require much more energy to coordinate
their perceived responsibilities and access to health care.
Disparities also seem to exist in the ability to acquire transportation
to health care appointments, as well as finding childcare
resources. Until we, as an AIDS community, acknowledge these
basic disparities, HIV positive women will continue to receive
suboptimal health care, which in many cases may equate to
no health care at all.
The Clinic Visit
The clinical visit can sometimes
consist of a very long time spent in waiting rooms that lack
a supportive environment for women, including inadequate activities
to keep their children occupied and a lack of GYN or contraceptive
care. Many health care professionals have provided care to
gay men with HIV/AIDS for so long, they may feel uncomfortable
providing care for women and/or addressing the difference
in women’s health care demands.
During a woman’s initial
visit, usually between 50 to 100 mL (between 2–3 ounces or
4–5 tablespoons) of blood will be sent for routine laboratory
evaluation such as CD4 T-cells, viral RNA, total blood count,
chemistry panel (checking the liver, kidney and electrolytes),
syphilis and a toxoplasmosis panel. Each woman will also have
a baseline chest X-ray, urinalysis and a mantoux skin test
(to check for tuberculosis). An appointment will be made for
a return clinic visit with the health care team where a history,
physical examination and the laboratory results will be evaluated
and discussed.
|
"Until we, as an AIDS community,
acknowledge basic disparities, HIV+ women will continue
to recieve suboptimal health care."
|
|
The initial physical examination
should be conducted with a review of symptoms (to determine
if anything is wrong), focusing on specific and common HIV-related
symptoms including fevers, night sweats, weight loss, diarrhea,
skin rashes or lesions, oral thrush or ulcerations, and changes
in neurologic function (memory loss, tingling in your hands
or feet).
Basic laboratory work (drawing
blood) should be done during the first visit and then repeated
every 3–4 months. The laboratory evaluation should include
CD4 T-cell counts, viral load (vRNA) along with liver function
testing, basic complete cell count and chemistry panels. Although
there are a fair amount of data available that suggest resistance
testing (genotyping and phenotyping) can help us decide the
best and most successful antiretroviral therapy, these tests
are not widely available.
|
 |
Staying Healthy
During the first several
visits, women will receive an overview of how HIV is transmitted,
how it affects the immune system and what they can do to stay
healthy. All of the information may not be remembered, but
a list of questions that are felt by the patient to be important
should be kept and brought to each appointment. Bringing questions
to the clinic appointment helps to direct the health care
team in addressing the individual needs of each woman and
can provide a rewarding experience for both the woman and
her healthcare team. Becoming involved in community support
groups will continue to enrich the women’s understanding of
HIV and its associated syndromes, and give them the opportunity
to develop new friends thereby creating and strengthening
a support network.
When Should You Start
Antiretroviral Therapy?
It is important to know that
there are guidelines available (http://www.hivatis.org
or call 1-800-448-0440) to help clinicians make decisions
about what antiretroviral medications may be appropriate.
However these are only guidelines and do not deal with individual
or “life” issues. Starting antiretroviral therapy is almost
never so immediately required that someone cannot take a couple
of weeks to gather information, talk to a treatment advocate,
read AIDS newsletters, talk about their options with their
health care provider and make an educated choice!
Deciding when to start medications
should not begin without a great deal of time spent on discussing
the subject of adherence.
When to start taking antiretrovirals
is really dependent on several factors. The first is to determine
the viral load because the higher the viral load the more
likely the CD4 T-cells are to start decreasing. (Note: viral
loads may be lower in women than men with equal T-cells.)
The second is to determine the CD4 T-cell count. T-cells are
an important marker in knowing when to start taking antiretroviral
therapy. As the virus damages the immune system, T-cell counts
go down. Progression to an AIDS diagnosis is directly related
to low T-cell counts.
But most importantly, adherence
(taking medications regularly) is the real deciding factor
of starting highly active antiretroviral therapy (HAART).
Taking all of the medications as directed, as close as possible
to the appropriate time, is extremely important with antiretrovirals.
Women who are 95% adherent (missing less than one dose a month)
decrease the risk of developing resistance or eventual medication
failure and thus disease progression. If a woman is not ready
to take medications rigorously, then starting medications
should wait until she feels that she can commit to adhering
to a strict schedule. Health care is a team effort and each
member has a responsibility to do his or her part in maintaining
good health.
Prevention
Prevention care, or prophylaxis,
really means trying to prevent infections instead of waiting
until you become sick (http://www.cdcnpin.org).
Guidelines include recommendations of when to start prophylaxis
for opportunistic infection, immunizations, annual labs, PPD
(screening for TB) and bi-annual Pap examinations and colposcopy
if necessary. These guidelines suggest when preventive interventions
should occur. Prevention is an important component of care;
it helps to optimize health in women by minimizing illness.
Blood draws should be done
on a regular basis—usually several times a year or when clinically
indicated. During your regular blood draw, a toxoplasmosis
IgG, syphilis screening, lipid profiles, hepatitis screening,
chemistry and complete blood cell count should be done. Annual
flu vaccination should be utilized; this should occur during
the end of September through the end of November. This allows
the body enough time to respond to the vaccine by producing
antibodies against the strain of influenza that may be expected
during February through April. The flu vaccine does not lead
to the development of influenza, but some individuals may
be susceptible to developing an upper respiratory infection
that may occur shortly after receiving any vaccination.
Current recommendations suggest
that any HIV positive patient who is negative for hepatitis
B (HBV) should be vaccinated. For those patients who are positive
for hepatitis C (HCV) they should receive both HBV and HAV
vaccinations. A pneumovax should be administered followed
by a booster when CD4 T-cell increase >200 cells/mm3. A
booster tetanus vaccination should be given if it has been
greater than 5–10 years and/or again after CD4 T-cells are
>200.
STDs
Routine screening of sexually
transmitted diseases (STD) should be done every six months
during the GYN exam and when clinically indicated. Currently,
there is controversy over whether a colposcopy should be performed
during a routine Pap smear or only when the Pap results indicate
that it is necessary. Mammograms should follow current guidelines
(baseline between 40 and 50 years and annually over the age
of 50 or if clinically indicated). Receiving GYN care from
an experienced HIV/GYN clinician is extremely important when
screening for CMV, HPV and HSV. In the next several months,
the AIDS Clinical Trials Group (ACTG) will open a protocol
(A5029) looking at the effect of highly active antiretroviral
therapy (HAART) on genital secretions and effects on HPV (which
can lead to the development of genital warts or invasive cervical
carcinoma).
|
|
|
Pregnancy
Pregnancy is an important
discussion for some women. Discussing options regarding the
best time to become pregnant and currently available information
about fetal transmission should be a natural part of conversation
with your health care team. If your intention is to become
pregnant, it is extremely important to inform your health
care team so that certain antiretrovirals that are thought
to be unsafe in pregnancy can be avoided. Sustiva (efavirenz),
Ziagen (abacavir, ABC) and hydroxyurea (HU) have been shown
in animal models to potentially cause birth defects and should
not be used in women whose intention is to become pregnant.
Waiting until your viral replication or vRNA is below the
lower limit of detection will also decrease the risk of transmitting
HIV to your fetus.
Women and Estrogen
There is little information
about women and estrogen replacement. Hopefully in the next
year a clinical trial known as AT LAST will provide important
information about the effect of hormones. Another trial scheduled
for later next year will look at the contraceptive, Depo-Provera
and any potential interactions with protease inhibitors. So,
for now following the current guidelines on hormone replacement
is the best recommendation. Discuss issues about hormone replacement
and the use of contraceptives with your clinician and decide
together what is best for you. Just remember that nothing
takes the place of latex condoms (female or male) which should
be used to protect against diseases, regardless of your other
birth control choices.
Testosterone Replacement
Data on testosterone replacement
in women may actually demonstrate an increased risk of developing
lipodystrophy. The bottom line is a good exercise program
with a healthy diet decreasing fat intake. This is probably
the least invasive and holds the most hope. It can be hard
to start to exercise, so walk with a friend or your support
group or push your child in a stroller. You do not have to
join an expensive gym. Walking is a great way to build endurance
and lose weight.
Nutritional
Counseling
Nutrition is becoming a much
more important component in HIV care with information slowly
trickling into the mainstream about women’s risk of being
vitamin deficient. Several small studies suggest that women
may be low in vitamin B12 and vitamin A. The information is
not strong enough to recommend replacement, but an inexpensive
antioxidant and a multivitamin once a day is advised. Talk
to your health care team about a nutritional evaluation either
at your clinic, if it is available, or through one of the
community based organizations. Eating healthy makes good sense
and it is preventive.
Support
Becoming involved in a support
group may be one of the most important things that you do.
Getting together with other women to validate how you feel
is necessary! Support groups also will assist you in obtaining
all of the benefits you may be entitled to, including, at
times, free transportation to clinic appointments.
Talk to your health care
team, the nurse manager or the administrator of your clinic
and make suggestions about things you think would be important
to help you make your visit to the clinic more comfortable.
If you do not make suggestions, changes may or may not occur.
We need to start ensuring that our issues, as women, are addressed
because we are important! Many men with HIV/AIDS are skilled
in advocating for themselves and their male friends. Women
with HIV need to develop these skills to ensure that their
needs are being met.
Conclusions
More information is necessary
to improve the quality of care that women currently receive.
Health care facilities need to seek out the barriers that
impede the care of women infected with HIV disease, such as
transportation, child care and women-specific services.
Get involved! There are all
levels of involvement. Expect the best from the clinic and
if it does not meet your needs, suggest constructive ways
that the clinic can meet the needs of women. We need to capitalize
on the services that are available, and ask questions and
demand appropriate answers as to why some services that are
available to men are not available for women. Get involved,
be an activist. Become an equal partner in your health care.
This article is
reprinted with permission from Women Alive.
|
|
|
