TREATMENT ISSUES: Special Edition - Volume 6, Number 7, Summer/Fall 1992; The Gay Men's Health Crisis Newsletter of Experimental AIDS Therapies
Scott Wilson & Brenda Lein

All gynecological manifestations of HIV are understood as "HIV- symptomatic but not AIDS," and will be discussed in the following pages. Other conditions that women often get are also not considered AIDS. Some of these conditions include: endocarditis (inflammation of the lining of the heart); pulmonary tuberculosis (TB); idiopathic thrombocytopenic purpura (low platelets and bruising of unknown origin); kidney failure; bacterial infections such as pneumonia, bronchitis, sinusitis; and sepsis (bacteria in the blood). All of these conditions occur commonly in women with HIV. Additionally, some conditions which do qualify a person for an AIDS diagnosis occur more commonly in women than in men. Unfortunately, very little research on HIV in women has been done. This absence of data results in a lack of reliable information on the characteristics of gender-specific AIDS.[1]

The following introductory article attempts to offer a brief picture of AIDS as it occurs in women as well as the treatments available. Much of the data reported are from the Community Program for Clinical Research on AIDS, a federally-funded national network of community clinics and hospitals. The program was established in 1989 to conduct scientific trials with people who have traditionally been excluded from HIV/AIDS research. One CPCRA study, the Observational Data Base, observes and records the symptoms in, and the medications used by, people in the trial.

PNEUMOCYSTIS CARINII PNEUMONIA

Pneumocystis carinii pneumonia (PCP) is an AIDS-defining infection of the lungs that is caused by an organism called P. carinii. Its symptoms include shortness of breath, dry cough, and fever. PCP seems to occur very frequently in women as a first or second AIDS-defining illness. Diagnosis in women is often delayed and the illness may be severe by the time it is detected. These factors contribute to the high incidence of severe PCP in women and may contribute to a higher death rate.

PCP is treated with intravenous Bactrim/Septra (different brands of the same drugs made of trimethoprim sulfamethoxazole). For people who have sulfa allergies (toxic side effects from the drug), dapsone with trimethoprim or clindamycin and primaquine are good alternatives. Intravenous pentamidine should be reserved for people who cannot take either Bactrim/Septra or dapsone. Prevention of PCP is with lower doses of Bactrim/Septra or dapsone. Bactrim/Septra is the most widely recommended PCP prophylaxis and treatment for those without allergies to sulfa drugs. If allergies exist, de- sensitization to the drug (taking a little bit at a time in increasing doses) is recommended when possible.

In the observational data base study, only 52% of women with under 200 T4 cells were receiving PCP prophylaxis (preventive medication), and only 70% with a history of PCP were taking medications to prevent the disease from occurring again.[2] Such low numbers of women actually taking preventive medicine is very distressing, since PCP is an opportunistic infection (OI) that can be prevented in 90% of people who take appropriate prophylactic medicine. All HIV-positive women with under 200 T4 cells should take PCP prophylaxis to prevent disease. Inadequate medical attention or lack of access to quality health care clearly causes this failure in prevention.

ESOPHAGEAL CANDIDOSIS

Women are very likely to develop esophageal candidiasis as a first AIDS-defining illness. Esophageal candidiasis is caused by the same yeast infection that can also infect both the mouth and the vagina. It may start with an infection in the mouth (oral thrush) and spread to the esophagus (the tube that connects the mouth and stomach), causing pain when swallowing, weight loss, and vomiting. Many professionals speculate that controlling and preventing yeast infections in the vagina may also prevent esophageal candidiasis.

Of 24 women with AIDS followed in a Rhode Island study,[3] nine (38%) had esophageal candidiasis that qualified them for a diagnosis of AIDS. An additional 11 developed esophageal candidiasis over the course of the study. Of women in the CPCRA observational data base, 31% developed esophageal candidiasis. Other studies show the disease to be the most frequent OI in cohorts of Haitian and Central African HIV-positive women.[4] Prevention of fungal infections is promising. For more information about prevention of this disease see Treatment Issues, Volume 5, Number 7 and Volume 6, Number 4.

BACTERIAL PNEUMONIAS AND INFECTIONS

Bacterial pneumonia is common in HIV disease and recurs frequently.[5] Up to 10% of people with AIDS have pneumonia caused by a number of different bacteria.[6] Community-acquired bacterial infections of all sorts often affect both women and injecting drug users (IDUs) with HIV. Additionally, bacterial pneumonia is common in pregnancy and may be more common in HIV-positive pregnant women. Some infections are easily treated with standard oral or intravenous (IV) antibiotics, while some lead to life-threatening complications. Symptoms of bacterial pneumonia include fever, wet cough, and chest pain. Pneumococcal vaccination (along with annual influenza vaccination) has been recommended for people with HIV disease with more than 200 T4 cells, although its effectiveness in HIV disease is unknown.[7] Other possible preventive measures include immunoglobulin therapy and antimicrobial prophylaxis.

Bacterial pneumonias appear to occur and go undiagnosed more often in IDUs and women than in other populations.[8] One New York City study found that AIDS deaths among IDUs in a methadone maintenance program due to bacterial pneumonia and sepsis from 1984-1987 increased from 3.6 to 13.6 per 1000 deaths.[9] Additionally, it is interesting to note that during the 1980s in New York City there was a marked increase in deaths of young women due to bacterial pneumonias.[10] While this epidemic went unnoted by public health officials and AIDS experts, it is likely that many of these women died from lung disease (specifically undiagnosed PCP or bacterial pneumonia) complicated by HIV infection.

MYCOBACTERIUM AVIUM-INTRACELLULARE COMPLEX

Mycobacterium avium-intracellulare complex (MAC) is a serious AIDS- defining infection that tends to occur late in the course of the disease. MAC is a complex of mycobacterial organisms that produces wasting, fever, diarrhea, fatigue, anemia, and diseases of the bone marrow, liver, lung, adrenal glands, and gut. Widespread MAC in the body (disseminated) generally occurs in those already diagnosed with AIDS who have under 50 T4 cells.

It may be difficult to sort out the symptoms of MAC from the symptoms of advanced HIV-disease and drug side effects. Wasting, severe anemia, and liver damage in women with HIV appear fairly often, especially in the absence of MAC, making diagnosis more difficult.[11] Disputed evidence has recently emerged indicating that MAC occurs more frequently in women than in men. Treatment and prophylaxis are difficult, but promising drugs like clarithromycin and rifabutin offer hope. More information concerning MAC treatment and prophylaxis is available in Treatment Issues, Volume 6, Number 2.

TUBERCULOSIS (TB)

Tuberculosis is a common infection in people with HIV worldwide,[12] and has recently resurged as an epidemic in the U.S. National rates of tuberculosis have skyrocketed in the 1990s. The disease is particularly complicated for people with HIV. Active infection includes symptoms such as fever, cough, and chest pain. TB exists in two forms: TB in the lungs (pulmonary) is highly contagious through droplets of fluid that enter the air when an infected person coughs or sneezes, and widespread (disseminated) TB, an AIDS-defining illness, causes disease of the liver, central nervous system, adrenal glands, lymph nodes, skin, reproductive organs, and heart. Disseminated TB is more likely to occur in people with suppressed immune systems. It is not, however, the contagious form of the disease.

As new TB outbreaks continue to occur in the U.S., especially in urban areas, women with HIV are at risk for TB. TB is more likely to occur in areas without proper ventilation, such as shelters, hospitals, prisons, and many homes. TB in HIV-positive people usually occurs with a new infection or when an old infection reactivates. Both occur when the immune system is relatively intact (300-500 T4 cells).

The PPD (Purified Protein Derivative) skin test screens for TB. The test involves injecting some proteins of the TB bacteria just under the skin of the forearm. After 48 hours, a person who is infected may develop a small, red bump at the site of injection. However, people with immune suppression often do not respond to the test, even though they have been exposed to TB. Lack of response to skin tests because of immune suppression is a condition called anergy. Sometimes the PPD test can be given along with other skin tests to see if the immune system is so suppressed that it cannot respond.

For successful TB treatment, people who know they have active TB must take medication for a fairly long period of time, usually a year. TB treatment is cumbersome and sometimes requires multiple medications. In most cases, however, TB can be cured. In HIV-positive people, doctors often recommend taking medicine even longer than a year. Alarmingly, multiple drug-resistant (MDR) TB strains have recently emerged in New York and Florida. Seemingly, resistance is the consequence of inadequate care and follow-up that resulted in under medication of TB. MDR TB strains are difficult to treat with the existing range of medicines. In most cases, MDR TB has led to death in people with AIDS. Drug-resistant TB further complicates treatment in HIV-infected women, and public health officials must respond to address the problem quickly and comprehensively.

KAPOSI'S SARCOMA

The exact cause of Kaposi's sarcoma (KS) is not known. Rather than being a true cancer, KS is now thought to be a collection of abnormal blood vessels caused by a variety of bodily chemicals interacting in concert with immune suppression. Another theory says that KS is caused by an infectious agent. Typically, KS occurs as hard, not-very-painful, purplish splotches on the skin. It can also occur on internal organs. A recent study of KS in bisexual or homosexual men with AIDS in London identified sexual practices in which there was contact with partner's feces as a risk for KS.[13] The epidemiology of KS in women is filled with conflicting reports, but one thing is clear: women develop KS far less frequently than men. However, about 1%-3% of women develop KS.[14] In early stages, KS can be fairly benign, but in late stage AIDS, it can be an aggressive, life-threatening, even fatal, condition involving the gastrointestinal tract and lungs.

A 1990 French study of 12 women with AIDS found that KS occurred only in severely immune-suppressed women.[15] An article in the British medical journal the Lancet reported KS lesions were more common among female sexual partners of bisexual men (3%) than among those of exclusively heterosexual IDUs (O.7%).[16] It is difficult, however, to say that KS in American women is different than in men, since we do not have enough research data. One San Francisco study did find that most KS occurred in women infected through their own IV drug use.[17] For details about KS treatment see the May 1, 1991 edition of AIDS Treatment News (No. 122).

ENDOCARDITIS

Endocarditis is a bacterial infection that causes inflammation of the heart valves that if left untreated may lead to heart failure and death. The most common cause of endocarditis is a bacteria called Staphylococcus aureus.[18] Since endocarditis has long been associated with intravenous drug use, it is a serious problem in HIV disease for women who are IDUs. The condition is not considered an AIDS-defining illness. The most common symptom is fever, but other symptoms include heart murmurs, irregular heart beats, chills, headache, back and chest pain, stomach ache, nausea, and vomiting. Treatment is with antibiotics.

Doctors can usually detect heart murmurs, which may indicate endocarditis. The disease can lead to many complications in the circulatory system, the central nervous system, the lungs, kidneys, and brain. Prophylaxis is usually indicated only in persons who have had endocarditis in the past and who need to have a surgical or dental procedure during which bacteria may enter the blood. In such an instance, single high-dose amoxicillin is recommended, with clindamycin or a two-dose erythromycin regimen for patients who are allergic to penicillin.

BLOOD DISORDERS

Women are more likely than men to get disorders such as low red blood cells (anemia). Besides anemia, a variety of HIV-related blood conditions cause serious problems in women, including low numbers of neutrophils (neutropenia), low numbers of white blood cells (leukopenia), low numbers of platelets (thrombocytopenia), and an inability to stop bleeding (coagulation disorders). Women, injection-drug users (IDUs), and persons with hemophilia are at increased risk for these conditions.

Anemia is a broad term used to describe a decrease in the number of red blood cells. It can have many causes, including deficiency in iron or vitamin B-12, lupus, rheumatoid arthritis diseases causing inflammation, or chronic infections, such as tuberculosis, MAC,[19] parvovirus B-19, autoimmune reactions (where the body attacks its red blood cells), malnutrition, AZT, and other antiviral drugs. Many women frequently experience anemia because iron is lost during menstrual periods and in pregnancy because the growing fetus drains maternal iron stores. Signs of anemia may include paleness, fatigue, shortness of breath, and palpitations of the heart. One study of HIV-negative women found that anemia was more prevalent in black women than in Asian, Mexican, and white women.[20] It is also common among people with low incomes, probably due to malnutrition. In HIV disease, anemia can be a major complicating factor, predicting adverse drug reactions, infections, and sometimes even death.[21]

Thrombocytopenia, another serious blood condition, has been associated with progression to AIDS and occurs in more than 40% of people with AIDS.[22] Idiopathic thrombocytopenic purpura (ITP), an AIDS-related condition characterized by easy bruising and mild bleeding from the nose, gums, and rectum, is common among HIV-positive women, IVDUs, and hemophiliacs.[23] Treatment is with steroids: usually prednisone (1 mg/kg by mouth every day); IV gamma globulin; or removal of the spleen (splenectomy). For the most part, response to therapy in HIV-positive people has been good.

Neutropenia is a condition characterized by an abnormally low number of a subset of white blood cells called neutrophils. It can be caused by drugs associated with bone marrow damage such as, AZT, Bactrim (TMP/SMX), 5-flucytosine, acyclovir, ganciclovir, pentamidine, pyrimethamine, sulfadiazine, vinblastine, and vitamin deficiency. Neutropenia can lead to severe, life-threatening bacterial infections, but only in rare instances.

WASTING

In the Rhode Island study by Carpenter et al, wasting syndrome was found to be the second most common AIDS-defining condition in women.[24] Another look at AIDS-defining infection in 618 people diagnosed between 1980 and 1990 found that women were two-and-a-half times more likely than gay men to be diagnosed with wasting.[25] Wasting was added to the CDC definition in 1987 after an evaluation of diseases found often in IDUs. Wasting is generally described as an involuntary loss of 10% or more of a person's usual body weight and can be caused by a variety of conditions associated with disease and drug therapy.

Wasting and weight loss accompany most major infections. Weight loss in the absence of an identified cause may result directly from HIV, which can infect intestinal cells, causing inflammation and diarrhea. An added complication of malnutrition and wasting in women is the demographics of HIV disease in women. HIV-positive women are likely to be minority, poor, and drug users or partners of drug users.[26]

Weight gain strategies include appetite stimulants such as megestrol acetate (Megace), a synthetic progesterone that seems to promote weight gain in patients with AIDS who do not have significant diarrhea[27]; marijuana therapy (Marinol); or appropriate treatment for underlying causes. Other strategies include total parenteral nutrition (TPN--also known as tube feeding), which means nutritional liquids are administered through the vein.

CONCLUSION

It is important to understand that women's needs, lives, and bodies have been excluded from medical attention and consideration. The healthcare system was made for men with easy access to health care. All medicines available in the pharmacy are based on men's weight, men's metabolism, and men's lab markers that measure important blood, protein, and cell levels. Thus doctors must often hazard a guess or rely on experience as to how specific medicines should be taken by women who are smaller, have more body fat, and different water-retention capacities than men. It is clear that women's access to health care is thwarted by racism, sexism and capitalism, a reality which causes significant problems for women with HIV and AIDS.

Footnotes ---------

1. Minkoff ML and De Horitz JA. et al. Care of women infected with HIV. JAMA 266:2253-2258, 1991.

2. Statistical Center: Community Programs for Clinical Research on AIDS. Observational Datat Base Project. Baseline Findings, April 17, 1991.

3. Carpenter CCJ et al. Natural history of AIDS in women in Rhode Island. JAMA 86:771-775, 1989.

4. Pape JW et al. Characteristics of AIDS in Haiti. NEJM 309:945-50, 1983; V Int'l Conf on AIDS, Abstract # TH.A.0.25, Montreal, June 1989.

5. Cohn DL. Bacterial pneumonia in the HIV-infected patient. Infect Dis Clinics of N Amer 5(3):485-507, 1991.

6. Chaisson RE. Bacterial pneumonia in patients with HIV infection. Seminars in Respiratory Infections 4(2):133-8, 1989.

7. Daley CL. Pyogenic bacterial pneumonia in AIDS. Journal of Thoracic Imaging 6($):36-42, 1991.

8. Jiminez ML e tal. Fiberoptic bronchoscopic diagnosis of pulmonary disease in 151 HIV-infected patients with pneumonitis. European J Clin Microb & Infect Dis 10(6):491-6, 1991.

9. Selwyn PA et al. Impact of the AIDS epidemic on morbidity and mortality among IVDU in a New York City methadone maintenance program. J Public Health 79(10):1358-62, 1989.

10. "Women's Unexplained Deaths Cited," New York Newsday, June 14, 1988.

11. Sathe SS et al. Severe anemia is an important negative predictor for survival with disseminated MAI in AIDS. Amer Review of Respir Dis 142:1306-12, 1990.

12. Styblo K. Overview and epidemiologic assessment of the current global tuberculosis situation with an emphasis on control in developing countries. Rev Infect Dis 11(2):S339-346, 1989; and Harries AD. Tuberculosis and HIV infection in developing countries. Lancet 335:387-390, 990.

13. Beral V et al. Risk of KS and sexual practices associated with faecal contact in homosexual or bisexual men with AIDS. Lancet 339:632-635, 1992.

14. Personal Communication, Dr. Paula Schuman, May, 1992.

15. Lassoued K et al. AIDS-associated KS in female patients. AIDS 5:877-880, 1991.

16. Huang YQ et al. HPV-16-related DNA sequences in KS. Lancet 339(8792):515-518, 1992.

17. Dodd DL et al. Oral KS in a woman as a first indication of HIV infection. J Amer Dental Assoc 122(4):61-3, 1991.

18. Himelman RB et al. Severe pulmonary hypertension and cor pulmonale in AIDS. Am J Cardiol 64:1396-1399, 1989.

19. Jacobson, MA, et al. Red cell transfusion therapy for anemia in patients with AIDS and ARC: incidence, associated factors, and outcome. Transfusion-Philadelphia 30(2):133-7,1990

20. Klebanoff MA et al. Anemia and spontaneous preterm birth. Amer J Obstet Gynecol 164:5963, 1991.

21. Steinberg, JP et al. Predictors of outcome in AIDS patients receiving zidovudine. JAIDS 2(3):229-34, 1989.

22. Kaslow RA et al. Infection with the human immunodeficiency virus: clinical manifestations and their relationship to immune deficiency. Ann Intern Med 107:474-80, 1987.

23. Finazzi G et al. Low incidence of bleeding from HIV-related thrombocytopenia in drug addicts and hemophiliacs: implications for therapeutic strategies. European J Haematol 45(2):82-5, 1990.

24. Carpenter CCl et al. Natural History of AIDS in Rhode Island. Amer J Med 86:771-775, 1989.

25. Smith E and Orholm, M Trends and Patterns of Opportunistic diseases in Danish AIDS Patients 1980-1990. Scandinavian Journal of Infectious Diseases 22(6):665-672, 1990.

26. Mitchell JL et al. HIV and women. current controversies and clinical relevance. J Women's Health 1(1):35-39, 1992.

27. von Roenn JH et al. Megestrol acetate for treatment of cachexia associated with HIV infection. Ann Intern Med 109: 840-1, 1988.

28. Klein RS et al. Periodontal disease in heterosexuals with AIDS. J Periodontal 62(8):535-40, 1991.

Copyright (c) 1992 - Gay Men's Health Crisis. Non-commercial electronic distribution encouraged. Distributed by AEGIS, your online gateway to a world of people, knowledge, and resources. Direct Dial: v.34+: 714.248.2836; v.120/ISDN: 714.248.0433 Internet: telnet:aegis.com www: www.aegis.com

9206
GM060701

Copyright © 1992 - Treatment Issues. Reproduced with permission. Treatment Issues is published twelve times yearly by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. Subscription lists are kept confidential. GMHC Treatment Issues, The Tisch Building, 119 West 24th Street, New York, NY 10011  fredg@gmhc.org  http://www.gmhc.org

AEGiS is made possible through unrestricted grants from Boehringer Ingelheim, Elton John AIDS Foundation, iMetrikus, Inc., John M. Lloyd Foundation, the National Library of Medicine, and donations from users like you. Always watch for outdated information. This article first appeared in 2003. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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, 2003. 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. .