8th Annual Retrovirus Conference
The HIV-Positive Women: Are You Getting Good Medical Care? Debra Johnson, NP, PA-C and Kathleen E. Squires, MD
The beginning of the AIDS epidemic in the United States was characterized by a constellation of symptoms and syndromes that were shown to due to transmission through homosexual activity and intravenous drug abuse (IVDA). In fact, women were excluded from an AIDS defining diagnosis until 1993 when a CD4 cell count < 200 cells/mm3, or a CD4 cell percentage of <14 and/or invasive cervical carcinoma were added to the CDC criteria. In 1995 > 59% of the women were diagnosed based on the addition of the new criteria added in 1993. As the face of AIDS continues to change, with women representing more than 42% of the total cases reported in 1999, it would stand to reason that a health care system that was constructed around the health care needs of men should be reconfigured to meet the unique needs of HIV-infected women.
This article would not be complete without a statement about how little is known about women who have this infection. Until 1993, when the Food and Drug Administration (FDA) mandated the inclusion of women into Phase I clinical trials, most women were excluded from clinical trial participation because of their ability to reproduce. Currently women comprise only 2-24% of the participants in clinical trials; therefore, most of the data that is currently available continues to be gleaned from men. Women activists need to continue their work with researchers to provide direction toward the common goal of improving the level of care that women who are HIV infected receive.
Most of the data that is currently available would suggest that there is a disparity in access to specialized HIV-health care for women. This disparity is most likely due to a number of circumstances: choosing between traditional responsibilities of caring for children or others who are dependent on them and their own heath needs; lack of child care facilities; difficulties associated with transportation; difficulties with the cost of health care and medications and the lack of comprehension that they are at risk for this infection. Until we acknowledge these basic disparities, women will continue to receive suboptimal health care, which in many cases may equate no health care at all.The Clinic Visit: make sure your needs are addressed
During the initial visit, usually 50 to 100 mL (between 2-3 ounces or 4-5 tablespoons) of blood will be drawn and sent for routine laboratory evaluation such as CD4 cell counts, viral RNA levels, total blood count, chemistry panel (check the liver, kidney and electrolytes), tests for syphilis and toxoplasmosis. 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 at which time a history will be taken and a physical examination will be performed. The results of laboratory tests obtained during the initial visit will be reviewed and discussed with you.
The initial physical examination should be conducted with a review of symptoms (is anything 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 at the first visit and then repeated every 3-4 months after you are on stable medications. The laboratory evaluation should include CD4 cell counts, HIV RNA levels, liver function tests, complete red and white cell counts and chemistry panels. Although there is a fair amount of data available that suggests that resistance testing (genotyping and/or phenotyping) can assist your physician to select a successful antiretroviral regimen, especially after the first evidence of medication failure, these tests are not widely available. In New York State, Medicaid started paying for Resistance Testing in November 2000.
During the first several visits, you should receive an overview of how HIV is transmitted, how it affects the immune system and what you can do to stay healthy. Since it is expected that you will not remember all of the information that is reviewed, you should make a list of questions that you feel are important that you should bring to each appointment. This will help the healthcare team to address your needs can provide a rewarding experience for both you and your health care team. It may also help you to develop a support system by becoming involved in community support groups and receiving treatment education through community organizations like NATAP. These groups usually provide sessions on HIV and itνs associated syndromes as well as an opportunity to develop new friends who share common issues.
should you start antiretroviral treatment?
It is important to know that there are Federal Treatment Guidelines (http://www.hivatis.org or call 1 800/448-0440) available to help clinicians make decisions when to start therapy and advice about what regimens to use. You can speak to a NATAP Treatment Educator about the Guidelines and the decision of when to begin therapy. The Guidelines were revised in February 2001. Previously, they recommended HIV treatment ought to be considered when CD4s are 500 and viral load 10,000-15,000 copies/ml, but they were revised to 350 CD4s and 55,000 viral load copies/ml (using the PCR test, 30,000 using the bDNA test). Most doctors in New York use the PCR test. But, the Guidelines are flexible. They say the decision on when to begin therapy depends on the patient's situation and is a decision between doctor & patient considering all the relevant factors & the patient's personal circumstances.
These are only guidelines; your provider has to take into account your history, stage of infection and life circumstances to devise a treatment regimen that is most appropriate for you. Starting antiretroviral therapy is never an emergency! Once you start taking medication, it must be assumed that you will have to continue to take some form of treatment for the foreseeable future. The time to start treatment is when you are ready to commit to taking medication regularly and every day.
When to start taking antiretrovirals is really dictated by several factors. The first is to determine how high the viral load is, because studies have shown that people with higher viral loads are more likely to progress to AIDS (lower CD4 cell count or develop an opportunistic infection) over a shorter period of time. The second is to measure the CD4 cell count. Once the CD4 cell count falls below 200, the more likely it is that a patient will develop an opportunistic infection. One of the major goals of therapy is to maintain CD4 cell counts at a high level to minimize the chances of an opportunistic infection.
But most importantly, adherence (taking your medications) is the real deciding factor of starting highly active antiretroviral therapy (HAART). Taking all of the medications as directed, which means every dose of each medication on time and regularly, is extremely important with antiretroviral medications. Women who are 95% adherent (missing less than 1 dose a month) decrease the risk of developing resistance and/or eventually medication failure. If you are not ready to take medications rigorously, you should wait until you feel that you can commit to adhering to ART. You and your provider will need to address whatever issues there are that may impact on your ability to take your medications successfully. Health care is a team effort and each member has a responsibility to do his or her part in maintaining good health.
Prevention 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 (see table), immunizations, annual labs, PPD (screening for TB) and bi-annual pelvic examinations with pap smears and colposcopy, if necessary. These guidelines suggest when preventive interventions should occur. Prevention is an important component of health care; it helps to optimize health in women by minimizing illness.
During your regular blood draw, a toxplasmosis IgG, syphilis screening, lipid profiles, hepatitis screening as well as chemistry and complete cell count will be done and should be done on a regular basis, at least several times a year or at any time that these laboratory tests are clinically indicated. Annual flu vaccination is recommended; this should occur any time from 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 March/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.
You should be tested for hepatitis B and C. Current recommendations suggest that any HIV-positive patient who is negative for hepatitis B (HBV) should be vaccinated. Patients who are positive for hepatitis C (HCV) should receive both HBV and HAV vaccinations.A pneumovax should be administered followed by a booster when CD4 counts increase > 200 cells/mm3. A booster tetanus vaccination should be given if it has been longer than 5-10 years since the previous one and/or again after CD4 T-cells are > 200.
& Gynecologic Care
Routine screening for sexually transmitted diseases (STD) should be performed every 6 months during the GYN exam and whenever clinically indicated. Currently, there is controversy over whether a colposcopy should be performed in addition to a PAP smear during the routine pelvic examination or only when the PAP smear results indicate that it is necessary. The PAP smear indicates whether cervical dysplasia (abnormal cells of the cervix), caused by infection with human papilloma virus (HPV), is present. Genital tract HPV infection and cervical dysplasia are more common in HIV-infected women. Certain types of HPV are associated with genital warts and/or cervical cancer. It is important, therefore, that gynecologic care is delivered by an HIV/GYN clinician who is familiar with these conditions. There is some preliminary evidence that HAART can at least partially reverse the course of genital tract HPV infection. There is an ongoing ACTG study that will study the effect of HAART on genital tract HPV infection in women participating in HAART studies. Mammograms should follow current guidelines (baseline between 40 & 50 years and annually > 50 or if clinically indicated).
Family Planning & Pregnancy
Family planning and pregnancy must be included as part of your evaluation. Options for birth control and contraception as well as information about mother to child transmission and current strategies for treatment during pregnancy to decrease the risk of transmission should be routinely reviewed. If you are considering pregnancy, it is extremely important to inform your health care team so that they can take this into account when putting together an antiretroviral regimen for you. Some of the currently available medications have caused toxicity in animal models and should not be used under these circumstances.
There is little information about estrogen replacement in HIV infection. There are ongoing studies that may provide data within the next year or two. For the present time, following the current guidelines on hormone replacement is the best recommendation. There are drug interactions between oral contraceptives and some of the protease inhibitors and non-nucleoside reverse transcriptase inhibitors that may lower the blood levels of the oral contraceptive. Discuss issues about hormone replacement and the use of oral 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 regardless of your other choices.
Data on testosterone replacement in women may actually indicate an increased risk of developing lipodystrophy. The bottom line is that a good exercise program with a healthy diet that decreases fat intake is probably the most effective and practical solution at the moment. 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.
Nutrition is becoming a much more important component in HIV care. 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 will not hurt. 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 can supplement what you are already doing.
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 will also 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 clinic more comfortable. If you do not make suggestions, changes may or may not occur. You can bet men make sure their needs are met; you need to start ensuring that your issues are addressed because you are important too!
More information is necessary to improve the quality of care that HIV-infected women currently receive. Health care facilities need to identify the barriers that impede the care of women infected with HIV such as transportation, childcare and women-specific services. It is difficult to demand answers without being an active participant in searching for those answers. 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 when services are not available. Get involved, be an activist. Become an equal partner in your health care.