AIDS TREATMENT NEWS No. 112 - October 5, 1991
Denny Smith

Examples of Inferior Diagnosis and Treatment

Within WHO's estimate of two million women with HIV, eighty percent are cases reported from sub-Saharan Africa. Most of the remainder are reports from Latin America and North America. Eastern Europe and Asia document the lowest incidence, although these are areas of the world least familiar with AIDS epidemiology, so many cases may be missed. Women have become the fastest-growing segment of reported HIV infections, but a consequence of their marginalization in the epidemic is the widespread incidence of undiagnosed or unreported infections. Even where reporting is meticulous, biased assumptions discount many people, such as lesbians and older women.

In the United States, a disproportionate number of women with HIV are from communities of color, where AIDS is a leading cause of death. In this country with the world's most reported HIV diagnoses, health care is an elitist commodity, largely available according to one's level of income. People with HIV who are unable to afford private insurance have a difficult time finding dependable care, and this inequity is worsened by economic barriers of race and sex. A study presented at the Conference by the Perinatal AIDS Center at San Francisco General Hospital revealed that pregnant, HIV+ women experience social and economic problems which pre-date their HIV infection and which interfere with their compliance in clinical protocols and care plans.(1)

The discrepancy between what women give to the health of the community and what they get is not unique to the AIDS crisis. Cultures everywhere rely on women to attend to the sick and to details of daily health. A Conference report from Rutgers University described results of interviews with care-givers of people with AIDS that resembled social patterns of care for the elderly and chronically ill: women provided the bulk of daily care. More pointedly, people with AIDS in every transmission and ethnic category received most of their unpaid care from women.(2)

This environment contributes to women putting their own health second, with resulting delays in medical care and increased susceptibility to opportunistic infections. An AIDS information center in Mexico City, seeking ways to improve psychological support for women with HIV, reported that women with children always gave priority to the child, and second place to themselves.(3) A demographic review of a cohort of urban women by Georgetown University Hospital found that women tended to discover their serostatus late in HIV progression. Thirty nine per cent of this cohort already had T-cell counts below 200, and another 36 per cent had a count under 500.(4) In other words, many had missed the opportunity to intervene early, and probably more effectively, in their infection.

The criteria for diagnosing AIDS have been defined largely from studies of HIV progression in gay men, providing guidelines) for physicians who may apply them to all their patients and underrate symptoms like chronic vaginitis and pelvic inflammatory disease specific to women. Gynecologic problems can be the first signs of compromised immunity in women, and gynecologists may be less likely than internists to be familiar with manifestations of HIV. The Centers For Disease Control have been under pressure to revise the definitions of AIDS to account for women's symptoms.

One concern receiving attention now is the frequency of cervical and vaginal cell abnormalities which could develop into tumors. A number of studies from the Conference, from different countries, revealed a higher incidence of these in women with HIV, especially those with past infections of the human papilloma virus (HPV), which causes genital warts and is a sexually transmitted disease. To monitor the risk of cervical cancers in HIV+ women, some physicians now recommend pap smears every six months.

A Conference abstract submitted by three German universities described how alpha interferon production in women declined as HIV infection progressed, and this was accompanied by an increase in cervical and vaginal atypias and inflammation. They concluded that the drop in alpha interferon production could give predictive information for gynecological diseases.(5)

A number of factors may lead to lower survival rates in women. An evaluation of people with Kaposi's sarcoma who attended the Uganda Cancer Institute found that the incidence of KS was increasing in general, and that women with KS tended to have a more aggressive disease, involving lymph nodes, and died sooner than male patients. The evaluators suggest that hormonal factors be investigated for their role in the development of KS. (6) (In other countries, KS is diagnosed less frequently in women than in men.)

Pregnancy raises a variety of questions for HIV+ women, such as the potential for transmitting the virus to the baby, the effect of various drugs on the mother and the fetus, and the effect of pregnancy on the mother's HIV infection.

The chances for infants to acquire HIV from seropositive mothers has been reported recently to be 25 percent and lower, a drop from older estimates. The modes for mother to infant transmission are becoming better understood. Transmission is thought to be possible through the placenta (perhaps at any time of the pregnancy), during birth (contact with maternal blood), or, least likely, after birth through breast feeding. Scientists at the National Institute of Allergy and Infectious Diseases (NIAID) discovered that several types of cells in the placenta, like helper cells in the blood, exhibit a CD4 receptor to which HIV readily binds. NIAID is conducting a clinical trial to determine if AZT given during pregnancy can limit HIV transmission to the fetus, although the protocol deals only with the third trimester.

A French study at the Conference found that the incidence of perinatal transmission is increased in mothers with low helper cell counts and positive p24 antigenemia.(7) This would imply that early monitoring and antiviral intervention for women to halt the decline of immune markers could also lower the incidence of perinatal transmission.

A retrospective review of 403 women in Masaka, Uganda, compared the progress after childbirth between HIV+ and HIV- mothers. The seropositive mothers had longer hospitalizations, lower mean hemoglobin levels, and an increased incidence of thrush, herpes zoster, headaches and gastrointestinal upsets.(8)

However, among women who are seropositive, there is no evidence that pregnancy speeds the progression of HIV infection.

Signs of Change

A new critical awareness of women's HIV health has generated a sequence of events this year.

* At the International Conference on AIDS in San Francisco last June, ACT UP staged effective demonstrations to highlight issues pertinent to women with HIV, using civil disobedience to block downtown city traffic and capture the eye of the news media. More than 80 studies relating to women and HIV were published in the Conference abstracts, a sign that these issues have been receiving some private, if not public, attention. Unfortunately, AIDS research has been so obsessed with women's relationship to childbearing and transmission of the virus, that data from studies of women's health for the sake of women are still empty pages. We need news of options and experience for treating women's HIV infections.

* In July, women and AIDS organizations around the San Francisco Bay Area held a public forum addressing the deficits in the design of clinical trials. Speakers included women living with HIV, physicians treating AIDS, and community service providers. The issues included clinical trials entry criteria, which can arbitrarily exclude women based on the theoretical risk of a new drug taken during pregnancy. Although the risk should be considered, the choice is illogically removed from those with the greatest interest -- potential women participants. Another aspect of traditional trial design which can systematically exclude women consists of protocols which try to minimize variables in the data by recruiting from a homogeneous population, such as gay men.

The head of the AIDS Activities Office of San Francisco's Department of Health, Sandra Hernandez, M.D., who was one of the forum's speakers, called for a reassessment of inclusion/exclusion criteria for clinical trials, and a realignment of their purpose and scope to account for everyone coping with HIV.

* At a recent meeting of the AIDS Clinical Trials Group in Bethesda, Maryland, Daniel M. Hoth, M.D., announced a future public conference to address women and HIV, in collaboration with the Centers for Disease Control. The announcement came after months of pressure from AIDS activist women. Researchers from NIAID then met with representatives from the AIDS community the week of September 24 to plan the details of the conference. We spoke with Lisa Auer, who was there representing the Project Inform Community Research Alliance in San Francisco.

Ms. Auer told us that the meeting was productive, and relayed some decisions about the conference: it will be held in Washington, D.C. on December 13 and 14; four separate focus tracks were named: epidemiology, clinical manifestations and therapeutics, psychosocial aspects of HIV, and education and prevention. Only 1000 participants will be registered, with 100 spaces reserved specifically for women with HIV. Attendance is free, and for information interested persons can call Carol Gordon or Debra Stewart at 301/770-0610. The next issue of Project Inform's PI Perspectives will contain an article by

Ms. Auer on woman and HIV.

* New community models could facilitate women's access to consistent health care. One example is a living cooperative for women with AIDS or related conditions and their children now organizing in Oakland, CA. The project is named Hale Laulima, a Hawaiian expression meaning "house of many hands"; it should be active by December. The goal is for residents to meet their individual needs, such as doctor visits, by pooling resources and sharing meal preparation and childcare. This could substantially improve access to medical care for women ordinarily not able to take time for their own needs. The residence also plans to foster discussions of treatment information, which frequently doesn't reach isolated women in a community. (Hale Laulima can use financial donations -- the mailing address is 3871 Piedmont Avenue, Oakland, CA, 94611.)

Another new community model was described in a Conference abstract from the New Jersey Medical School and Medical Hospital, where a full-service outpatient clinic for women with HIV was established. When the course of women followed by the clinic was compared to women seen only as hospital patients, the data suggested that those cared for in the clinic had better survival rates. The clinic provided psychological support and social work services as well as medical attention.(9)

The New Jersey Women and AIDS Network has printed a very useful brochure surveying the problems and answers pertinent to HIV+ women, and a similar booklet written for health providers. Requests for copies can be sent with a self-addressed stamped envelope to the New Jersey Women and AIDS Network, 5 Elm Row, Suite 112, New Brunswick, NJ, 08901. Their phone number is 201/846-4462. For bulk orders the brochure is 20 cents each and the booklet is 30 cents.

The Women's AIDS Network, based in San Francisco, compiles topical information packets for women and for organizations dealing with HIV and AIDS. It can be reached at 415/864-4376, extension 2007.

The AIDS activist community, women with HIV, and many AIDS service-providers are calling for future AIDS research to address women directly. HIV progresses in women, even if no one notices until a serious crisis brings them to an emergency room, and even while they are depended on to maintain the health of others. Symptoms of HIV in women are late in gaining recognition, with an according lag in effective treatments.

1990 is more than past the time to acknowledge the pivotal position of women in the AIDS crisis, and begin to correct the pervasive, institutionalized neglect of their health. Information concerning World AIDS Day can be requested from WHO, 1211 Geneva 27, Switzerland. In the U. S., activities will be coordinated by the American Association for World Health, which can be reached at 202/265-0286.

References

1. Hauer LB and others. Client compliance with perinatal AIDS research: the Bay Area Perinatal AIDS Center (BAPAC) experience [abstract Th.D. 805]. Sixth International Conference on AIDS, San Francisco, June 20-24, 1990.

2. Schiller NG and others. The role of kin in care giving for persons with AIDS in New Jersey [abstract Th.D. 822]. Sixth International Conference on AIDS, San Francisco, June 20-24, 1990.

3. Tovar P and others. Psychological aspects and particular problems in HIV infected women [abstract S. B. 374]. Sixth International Conference on AIDS, San Francisco, June 20-24, 1990.

4. Young MA and others. Natural history of HIV disease in an urban cohort of women [abstract F. B. 432]. Sixth International Conference on AIDS, San Francisco, June 20-24, 1990.

5. Friese K and others. Interferon alpha as a predictive parameter in the development of gynecological diseases in HIV- infected women [abstract F. B. 461]. Sixth International Conference on AIDS, San Francisco, June 20-24, 1990.

6. Mbidde EK and others. The epidemiology and clinical features of Kaposi's sarcoma (KS) in African women with HIV infection [abstract S. B. 508]. Sixth International Conference on AIDS, San Francisco, June 20-24, 1990.

7. Boue F and others. Risk for HIV-1 perinatal transmission vary with the mother's stage of HIV infection [abstract Th.C. 44]. Sixth International Conference on AIDS, San Francisco, June 20-24, 1990.

8. Kalibala S and others. The relationship between HIV infection and maternal morbidity in Masaka, Uganda [abstract F. B. 458]. Sixth International Conference on AIDS, San Francisco, June 20- 24, 1990.

9. Pinto RC and others. Women's clinic: a full service clinic for women with HIV disease [abstract S. D. 816]. Sixth International Conference on AIDS, San Francisco, June 20-24, 1990.

901005
ATN11202

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1990. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .