Treatment Issues for Women
DISCUSSION DOCUMENT
Prepared by: Vicci Tallis
Prepared for: Treatment Action Campaign
Date: 5/3/2001
Please send comment or queries on this document and the issues that it raises to TAC
[email protected] or written comments can be sent to any TAC office – please mark for attention – TAC Science and Research Committee.

Deadline for comments 31 January 2002

TABLE OF CONTENTS


Acknowledgements
Executive Summary
Introduction
Context of Women and Health
Macro Factors
Socio-economic factors
2.1 Gender inequality

2.2 Feminisation of poverty
2.3 Violence against women
Gender inequalities in health
3.1 Social construct of health

3.2 Gender bias in medical research
3.3 Access to care
3.4 Quality of care

Issues for women living with HIV/AIDS

History
Current Debates
Needs and Issues of special groups
3.1 Young women
3.2 Lesbian women

Some treatment issues
4.1 Differences in viral load, CD4+ count and disease progression
4.2 Combination therapies and anti-retrovirals
Differences in opportunistic infections and symptoms
General Health
Specific HIV/AIDS Symptoms
Gynecological problems
Pregnancy related issues
Emotional and psychological issues
Issues for the Treatment Action Campaign

References
ACKNOWLEDGEMENTS

The following people contributed to the development of this document:
Promise Mthembu
Cati Vawda
Deborah Ewing
Sharone Ekambaram
Gill Seidel
Dawn Cavanagh

EXECUTIVE SUMMARY

A gendered approach to health does not only include biological factors but also considers the critical roles that
psychological, economic social and cultural factors play in promoting, protecting or impeding health. Biological and social factors must be analysed to understand how women and men experience health and illness.

Macro factors at a political and economic level determine the priority placed on health for men, women and children. This often involves difficult choices at a country and provincial level that are increasingly influenced by external policies and constraints. Socio-economic factors impacting on the women’s health include gender inequality in society, women’s access to wealth and resources and gender based violence. Women have many roles in society; three key roles identified in gender planning models are reproductive, productive and community. Women’s health is often focused on reproductive roles, ignoring other aspects of women’s lives and limiting her access to holistic health.

Gender inequalities in health are evident at all levels within the health sector, including research and service delivery.

Knowledge about illness and disease, gained through medical research, is for the most part determined from a male perspective. This has implications regarding what is known about women’s health and how women’s health is managed.

Access to care for both men and women is largely determined by the government’s health policies and programmes. Another determining factor is women’s health seeking behaviour. Research has shown that health-seeking behaviour differs between men and women. Women’s health seeking behaviour is more often than not determined by reproductive roles, either as a pregnant woman or as a mother with a sick child. Factors, which impact on health seeking behaviour include money, time, attitude of health care workers and mobility. Research also shows gender differences in the quality of care that men and women receive.

The gender politics of HIV/AIDS, both in South Africa and globally, has been mainly focused on prevention, particularly on women’s vulnerability to HIV infection and the prevention of mother to child transmission, and seldom on women’s care issues of which treatment is a vital part.

Despite women being diagnosed with HIV/AIDS from the early 1980’s little research has been done to ascertain whether there are differences between men and women in disease progression, opportunistic infections and management. Researching HIV/AIDS in women is at an early stage and there are many more questions that need to be answered. Women only account for 12% of trial participants.

There is research to show that there are differences in length of survival, levels of viral load and drug toxicity. In most studies to date the impact of these differences have not yet been researched. In terms of treatments, including anti-retroviral and opportunistic infection management, women are treated the same as men.

Treatment for women living with HIV/AIDS includes focusing on general health, identifying specific HIV/AIDS opportunistic infections that affect women, dealing with gynecological issues which are exacerbated by HIV/AIDS and managing the impact that pregnancy has on women living with HIV/AIDS.

Women’s HIV/AIDS treatment issues must go beyond her reproductive role. The challenge for HIV/AIDS and gender activists in South Africa is to get women’s treatment issues on the agenda of researchers, health care providers, and AIDS organisations, in order to improve knowledge and service delivery.

TREATMENT ISSUES FOR WOMEN


Introduction

The gender politics of HIV/AIDS has been mainly focused on prevention, particularly on women’s vulnerability to HIV infection and the prevention of mother to child transmission, and seldom on women’s care issues of which treatment is a vital part. Gender inequality is reflected in the response to HIV/AIDS
. One of the key responses to women and HIV/AIDS has been to highlight women’s reproductive role and to focus on the prevention of mother to child transmission. Women want, and have a right to, reproductive health services that will increase the likelihood of healthy babies. However, women are often seen only as mothers and not as individuals in their own right, with their own identities and special needs.

This paper aims to provide a background and a synthesis of treatment issues for adult women and adolescent girls. The focus of this paper is on specific issues pertaining to the treatment of physical and mental illness in women living with HIV/AIDS. Treatment issues that apply to both men and women are not discussed. Important prevention issues, such as mother to child transmission, breastfeeding and emerging technologies such microbicides are not covered in this paper.

International and local data was collected from journal articles and books. In addition information was accessed through extensive web-searches. The data was then analysed using a gender analysis and planning framework [Moser 1993].

The paper will be presented in three parts. Firstly, the context of women’s health will be discussed by using gender and health theories. This will move beyond a narrow focus of health as biological and include the macro political and economic and the socio-economic factors that impact of women’s health. The three key gender inequalities in health will then be discussed: bias in medical research, access to care and quality of care.

Secondly, the contextual analysis will be discussed in relation to women and AIDS. This will be done through a history of women and AIDS and a discussion of treatment issues. This will include two key treatment issues:
course of the disease including, disease progression and viral load including combination and anti-retroviral therapies and
Opportunistic infections, with a special focus on gynecological issues and the impact of pregnancy on women living with HIV/AIDS. The discussion of mental issues is limited to illness that manifests clinically.

Finally, the implications for action by treatment and gender activists are discussed.

There is a vast body of literature, based on research, about the treatment and management of HIV/AIDS. The problem with much of this research is male bias - it is defined and conducted by men with most of the research participants being men. It also pays little or no attention to the different manifestations of HIV in men and women. Whilst much of the information available is relevant for both men and women living with HIV/AIDS, the failure to address differences impacts negatively on women’s health and well-being.

The limits of this paper

In the absence of local studies on the treatment of women living with HIV/AIDS this paper draws heavily on US based studies.

Given that research with women is at an early stage, many studies are not conclusive and present other issues, problems and questions that need to be researched.

Women do not form a homogeneous group, either globally or in South Africa. Women’s health issues are informed by many factors including race, class, age, and sexual orientation. These factors will impact on women’s experience of health and illness. This paper will give a broad overview of treatment issues for all women - some of these issues will be more relevant to certain groups of women than to others.

A contextual analysis of women and health

A gendered approach to health does not only include biological factors but also considers the critical roles that social and cultural factors play in promoting, protecting or impeding health. [Garcia-Moreno 1999]. Power relations, between women and men, and between health care provider and client, are informed by these social and cultural factors. In short, biological and social factors must be analysed to understand how women and men experience health and illness. The biological factors to be considered in addressing treatment issues for women will be discussed below [see Section c]. This section will outline the macro and socio-economic factors impacting on women’s health and the gender inequalities in health.

1. Macro factors

The macro political and economic factors that impact on health in general, and women’s health, in particular are located at a country and at a global level.

To an increasing extent, pressures that arise out of the global economy influence national government decision-making. The political and economic factors that impact on women’s health include globalisation of trade and finance and huge debt repayments that divert funds from social services. For example, globally, there are 52 countries that have debts that will never be paid back. Zambia spends more on debt service than on health and education combined [CAA pamphlet]. In the 2001/2002 South African budget speech the Minister of Finance, Trevor Manual, noted that in the 1990’s South Africa’s debt repayments rose from 15% to 20% of the total budget. By 2002/3 he forecasts there will be a reversal in this trend and South Africa will be in a position to spend R 10 billion more on education than on debt. If this is the case the question arises as to how the health needs of women and men living with HIV/AIDS will benefit from a reduction in debt repayments.

The imposition of structural adjustment programmes on indebted countries by the World Bank and International Monetary Fund force governments to apply cutbacks to social services such as education and health. The impact of this adjustment is felt by women, men and children in indebted countries but the "silent adjustment" is a term that has been coined to reflect the undue hardship and pressure that women experience as a result of structural adjustment. Although South Africa is not highly indebted to the World Bank, a self-imposed form of structural adjustment has been implemented through GEAR.


At a country level, the fiscal policies of governments mean that political choices are made which are often not in favor of the poor, particularly poor women and one of the first areas to be impacted upon is that of health. The People’s Budget proposes that the annual real expenditure on health and other services be increase by at least 2% over population growth until 2004. According to Cosatu [2001] the South African 2001/2002 budget reflects "heavy, and unexplained real cuts in housing, electrification and health" [p2].

2. Socio-economic factors

The socio-economic factors that impact on the health of men and women include poverty, migration and mobility, rate of urbanisation, levels of violence, education and access to health care amongst others. For the purpose of this paper this section will focus on, gender inequality, the feminisation of poverty, and gender based violence.

2.1 Gender inequality

Despite many gains made by women in the last 40 years, gender equality is not yet a reality for many women. Women still lack economic, political and social power. Women’s relationships with men, in the work-place and with those rendering services, are characterised by unequal power dynamics. Socially defined roles for men and women see women’s main role being reproduction, which includes child bearing and care for children and the family.

The framework used in this paper is that of Moser [1993] who within her gender planning model, identifies three societal roles for women:

Reproductive role: which includes the childbearing and rearing responsibilities as well as domestic tasks that are undertaken by women that maintain and reproduce the labour force. It includes biological reproduction as well as care and maintenance of the labour force and of the future workforce.

Productive role: Women’s [and men’s] productive role comprises work that is done for payment or for kind. For example, a woman may work in a factory, as a domestic worker or as a lawyer and receive money for the work that she does or she may work as a farmer and produce goods that have an actual use value.

Community managing: Women’s activities in the community are defined as an extension of their reproductive role. They may include the provision and maintenance of scarce resources of collective consumption such as water, health care and education – work that is undertaken voluntarily and undertaken in "free time".

In a study of male and female roles in 17 less-developed countries, women’s work hours exceeded men’s by 30% [New Internationalist]. May [2000] refers to the "time poverty" of women which is the result of the long hours women spend on their reproductive roles – collecting fire-wood, water, child care, cooking and cleaning – to the detriment of their own well-being.

The South African Constitution entrenches women’s equality. However, this does not necessarily translate to equality in women’s lives, and little has changed for some women as the following data indicates.

TABLE 1: Mean monthly earnings by race and gender 1995

SOURCE

GENDER

AFRICAN

COLOURED

INDIAN

WHITE

Wage/Salary

Women

R 1188

R 1170

R 2106

R 2955

Men

R 1479

R 1558

R 2986

R 5578

Income
Self-employed

Women

R 1831

R 1831

R 5026

R 7036

Men

R 4310

R 6005

R 11802

R20270

Source: Hurt and Budlender:

This table reflects disparities in wages on the basis of both race and gender.

TABLE 2: Unemployment Rates by gender 1994 - 1997

GENDER

1994

1995

1996

1997

Women

24%

20%

25%

28%

Men

17%

14%

17%

19%

Source: Budlender:

2.2 Feminisation of Poverty

Statistics show that 70% of the world’s poor are women. The New Internationalist highlighted a study which focused on poverty over a 20 year period, [1970 – 1990], noted that the number of rural women living in poverty had increased by 50%, reaching 565 million, while poverty in men showed a 30% increase to 400 million. There is no indication that this trend has decreased in the past 10 years.

Women are more likely to be poor and malnourished and are less likely to have access to services [health, sanitation, clean water, education] and formal sector employment [Todaro 2000]. Female-headed households in South Africa are generally poorer than male headed households. In 1995 the average annual income of households headed by men was R48 000-00 compared to only R25 000-00 for women-headed households. [Hurt and Budlender 1998]

Even when women have access to income and assets [including land, equipment, employment, knowledge and skills] these are often controlled by men and women are less able to get out of the poverty trap [May 2000].

2.3 Gender based violence

Violence [domestic abuse, rape] is experienced by many women and girls and is often overlooked as a health issue. Violence against women and girls leads to serious injuries, mental health problems, disabilities and in some cases death. Violence is linked to HIV in two ways.

HIV as a consequence of rape and sexual abuse - women and children may become infected as a result of being raped or sexually abused. Women who are raped have no access to post-exposure prophylaxis and live with the fear of possible sero-conversion.

HIV as a cause of violence – often when women disclose their HIV status to their partner, or they are so sick that they are unable to look after children they are often beaten. Even the fear of violence may prevent women from insisting on safer sex practices or disclosing to partners and families.

3. Gender inequalities in health

Gender inequality impacts on every aspect of health and illness. This includes differences in:-

vulnerability to illness and disease,
prevention,
the response of the individual to their symptoms,
organisation and delivery of health care,
the politics of diagnosis,
questions asked by clinical researchers,
the knowledge and understanding of disease and treatment
[Lorber 1997].

For example, women are more vulnerable to HIV infection than men, partly due to physiology but also due to their often limited ability to protect themselves from infection. This is heightened by a lack of women controlled barrier mechanisms and the socially constructed "rules" of heterosexual sex, where men have the power to decide when, where and how sex takes place. Much of the care that women receive is linked to their reproductive role. Likewise, much of the research into women and AIDS is focused on the prevention of mother to child transmission. We know relatively little about HIV/AIDS in women, even less so in developing countries and this obviously impacts on treatment issues. [Patton, 1994, Johnson, 2000, Bass 1999. MacNeil, 1999]

3.1 Social construct of health

Disease and illnesses are not neutral and are also products of socialisation. The transformation of symptoms into a "label" is often influenced by societal beliefs, for example, HIV/AIDS emerged as a disease of stigma and discrimination, and one of intense moral judgments.

Gender has a major impact on how women and men are treated – including in health and illness [Lorber 1997]. This has been demonstrated in the way women have been viewed in relation to HIV/AIDS. The focus has been on women as responsible for the spread of HIV – either to their partner and child/ren. For example, sex workers were [and still are] stigmatized and blamed for bringing HIV into the "general population". Similarly, no mention is made of the father when talking about mother – to child transmission. Fortuin [1995] notes that in general, "women are continuously blamed and victimised for the illness of their children, partners and parents" p25

3.2 Gender bias in medical research

Medical research is a profoundly gendered activity. It is most often determined from a male perspective. This includes what topics are chosen, what methods are used (what data is collected) and how the data is analysed. Common problems experienced by women receive little attention if they are not seen as part of women’s reproductive role. For example, tropical diseases are a major cause of disability and death in sub-Saharan Africa and biological factors vary between the sexes and influence susceptibility and immunity. [Garcia-Moreno 1999]. Gender roles influence the degree of exposure and also the access and control of resources needed to protect women and men from infection. Research highlighting gender differences have focused on "women’s reproductive lives, assessing the effects of tropical diseases on fertility and pregnancy outcomes" [Manderson 1993 in Garcia-Moreno]

If the same disease affects both men and women many researchers have ignored possible differences in diagnostic indicators, in symptoms, in prognosis and in the relative effectiveness of different treatments. [Garcia- Moreno 1999, Doyal 1994, Foster 1995]

Women’s exclusion in research is justified on the grounds that cyclical hormonal changes make it difficult to interpret results and/or the fact that women may become pregnant and put the fetus at risk. Yet, "results obtained from research on predominately male subjects are applied with little question to [potentially] pregnant women patients" [De Bruin 1994 in Garcia-Moreno 1999]

Women are treated on the basis of information gathered from research:
On drugs that have not been tested on women’s bodies,
In diseases which may not have been studied in women, and,
In which women’s experience of illness and treatment is not adequately explored

Research that takes gender into account has to consider;
biological differences,
The differences between women and men’s roles and responsibility, For example, a bilharzia study showed that while the rate in males drops around 15 years the case is not the same for women. This is due to the fact that women are mainly responsible for water related activities and such duties require constant exposure.
their experience and knowledge about illness and disease,
their position in society,
their access to and use of resources and
The social codes governing women and men’s behaviour.

3.3 Access to care

On a global scale, in both a developed and developing context, there is a lack of attention of health issues for women who are poor. Studies carried out on households in various countries show that less is spent on health care for women and girls. This, according to Garcia – Moreno [1999] reflects women’s lower social status and lack of decision making power. In many instances, finances are controlled by men and what money women do spend is usually spent on their children. Female headed-households spend more income on the nutritional needs of the household’s members. [Posel 1997]. According to May [in Posel 1997] if consumption patterns in male headed-households were to mirror those in women headed households, the incidence of under-nutrition in South Africa would fall by 12%.

Men and women often show different patterns of health seeking behaviour. In developed countries women tend to consult health care professionals more than men. This trend is reversed in some developing countries. [Garcia-Moreno 1999]. For example, large numbers of men in malaria clinics in many countries led to the assumption that males were more at risk. Research in Thailand showed that rates of exposure were similar in men women and children and that variances were due to differences in health seeking behaviour.

Women are more likely to put the health care needs of others, such as a partner or children before their own needs. [Garcia – Moreno 1999, Koblinsky, Timyan and Gay 1991]. The health seeking behaviour of women is mainly based on their reproductive role [either as a pregnant woman or as a mother with a sick child] – and is usually what brings women into the health care arena [Garcia-Morena 1999, Koblinsky, Timyan and Gay 1991]

while a mother is quick to identify and respond to symptoms of illness and disability in others, she appears less assiduous in monitoring her own health. Her role in caring for others appears to blunt her sensitivity to her own needs. Being ill makes it difficult for individuals to maintain their normal roles and responsibilities: since mother’s roles and responsibilities are particularly indispensable, mothers are reluctant to be ill. [Graham in Miles 1991].

Other factors that impact on women’s health seeking behaviour include time, mobility, access to funds/resources, fear of health care providers / facilities and other social constraints which discourage women from attending health care facilities. [Koblinsky, Timyan and Gay 1991].

Fortuin [1995] noted that women in the South African context face unique difficulties and are dis-empowered by a lack of assertiveness skills. This creates a barrier for women to act on health information even if access is guaranteed. Women continue to feel unconfident, unassertive and intimidated by health officials. Access to health is affected by finances, language spoke at clinics, hours of operation and the attitudes of health care workers.

Garcia – Moreno [1999] notes that ingrained in many women is the fact that "suffering is her lot". Health problems, for example, a vaginal discharge, may be so widespread among women that it is accepted as normal and that women have "no expectation that things could be different" [p24]

The focus on reproductive health of women has implications for access to health in the following ways:

Young women, menopausal and postmenopausal women and women who decide not to have children are denied access to adequate and appropriate health care during important periods in life

Women of childbearing age have not found it easy to obtain health care for non-reproductive health, due to a focus on reproduction health especially in research and programmes [Koblinsky, Timyan and Gay 1991]

3.4 Quality of care

Gender dimensions of health can be causal factors in limiting the quality of care women receive. The quality of care received is often dependent on the power dynamic between the health care provider and patient/client. In the western medical model, which is, in many communities the dominant model, most doctors and health care establishment managers are men and most nurses are women. There is a definite hierarchy that is rigid – medicine is a privileged profession which gives health care workers, especially doctors, great authority, prestige and high incomes. Doctors dominate the flow of health care services. Trained in the biomedical model, they are taught to listen to symptoms or test results and not to the patient or client.

Women’s subjective experiences of medical encounters include sexism of doctors, and biases inherent in the institution of medicine make experiences demeaning for women. This does not necessarily improve much with nurses.
Within reproductive health services, health care providers focus on controlling women’s fertility. This is characterised by a failure to communicate information and a lack of cultural sensitivity. This often results in dehumanising treatment that may affect women’s willingness to use the services. Fortuin [1995] notes that the "over-medicalisation of health care, information on illness, causes, treatments and prevention is not always understood by women" p24.

Many studies have been done which reveal that in medical practice women and men are treated differently – with men being taken more seriously than women are. Furthermore, women and men physicians also treat women differently, for example, studies show that women physicians are more likely to do pap smears and mammograms for their female clients than male doctors do. [Garcia-Moreno 1999, Doyal, 1994, Foster 1995]

At a global level, health budgets are limited and neither men nor women, in most countries, can expect appropriate, effective and quality treatment. [Jacobson 1991]. However funds are still spent disproportionately on men and the gender bias in the allocation of resources is a worldwide phenomenon [Seidel 1993]. Thus, neither men nor women have access to adequate health care, but in general, men have access to better treatment than women do. Studies in the UK and the US show that women are less likely than men to be offered certain diagnostic procedures or treatments for heart disease. Similar trends show that women on kidney dialysis are less likely than men of the same age to be offered transplants. [Garcia and Moreno 1991]

In conclusion, strategies to improve women’s health need to be grounded in a rigorous analysis of the whole range of women’s productive and reproductive activities and the way these change across their life span. Kelly [in Lorber 1997] calls for "culturally sensitive women centred health care that encompasses medical and psychosocial services, prevention and education" [p83]. Women should be treated "as whole human beings with minds, bodies and spirits separate and distinct from men and worthy of equal investment in scientific study, clinical education and medical services" [Johnson and Hoffman in Lorber 1997 p 100-101].

The next section will explore issues specific to women and HIV/AIDS.

C. Issues for women living with HIV/AIDS

"In the final analysis the combination of unequal access to care and the gender gap in medical knowledge contributes to a situation where women in both rich and poor countries have a shorter expectancy than men after a diagnosis of AIDS"
[Garcia-Moreno 1999]

1. History

The story of the United States of America

According to Patton [1994], accounts of the epidemiology of women and HIV/AIDS that state the United States government ignored women for the first decade are erroneous. The reality is much more complex. There was recognition in the first few years of the epidemic that women also had the "clinical disorder". She notes that the "significance of women as subjects of the disease was first mystified, then sensationalised, then marginalised by fragmenting women by behavioural categories which obscured the rapid increase in infections".

In the early response to the epidemic, there was an overemphasis on female sex workers as vectors between the drug injectors and "general" public and an under emphasis of women’s actual risk through sharing needles and through heterosexual sex. Furthermore, issues of racism were apparent and women of colour were over-represented in HIV/AIDS statistics – especially as sexual partners of men living with HIV. This raised issues that African-American and Latin sexuality was exotic and "categorically different than white [hetero]sexuality". The general assumption was that women who acquired the ‘gay’ disease were sexually deviant. [Patton, 1994]

The main objective of the public health programmes was to prevent HIV from entering the ‘general population’ and there was little concern expressed to improve the clinical understanding of AIDS in women and much less to develop resources which could adequately address women’s needs, which were often different to the needs of men.

Only in 1993 did the Centres for Disease Control extend the list of defining HIV related illnesses to include gyneacological abnormalities and cancers. As Patton [1994] notes "women were continually within epidemiologists line of vision, but it took a decade to achieve official recognition of the uniqueness of their clinical and social experience of the epidemic" [p 13].

Is there a different history of women and AIDS in a country where the main mode of spread is heterosexual and over half of all infections are among women?

The South African response has been, for the most part inadequate, both in response to HIV/AIDS in general and with women in particular. Little, if any, attention has been paid to women’s treatment issues. Recently, the number of women’s organisations becoming involved in HIV/AIDS has increased. However, most of the response has been focused on service delivery, meeting the immediate, practical needs facing women. There is a lack of gender analysis and gender advocacy that would focus more on women’s strategic, long-term interests that challenge the status quo. [Gender AIDS Forum, 1999]

How does this impact on treatment issues?

The response to HIV/AIDS must concentrate on all aspects of the prevention – care continuum. In South Africa the main focus of the HIV/AIDS response has been on prevention. This is clearly illustrated in the 2001/02 budget. In relation to care there has been a focus on home and community based care as a solution to an over-burdened health care system. Treatment issues for women have largely focused on the prevention of mother to child transmission. Whilst this is a vital intervention, which impacts on a women’s psychologically and emotionally, it is not the only issue that must be addressed. It is vital for women to be seen separate from their reproductive roles and for research and services to be extended to meet all of women’s treatment needs.

Current debates

According to the World Health Organisation health is more than the absence of disease, it includes, amongst other things, physical, social and mental well being. The goal of the response to HIV/AIDS should be to promote this state of well being for men, women and children. This must include access to appropriate treatment and care for women, men and children living with HIV/AIDS.

A review of the literature highlights the following key problem areas to be addressed with regard to treatment issues for women:

Are there differences in how HIV manifests in men and women? This would include an examination of differences and similarities in opportunistic infections, [including type and severity], measurements of viral load and CD4 counts, and life span.
Given that initial findings [Project Inform 2000] suggest that differences exist in both type and severity of opportunistic infections as well as in viral load - what, then, are the implications for dosage and timing of treatment, clinical management and "positive living".

Much has been written about women with HIV/AIDS dying earlier than men with HIV/AIDS. There is nothing inherent in women that make this the case. Rather, factors such as access to health care, pro-active health seeking behaviour and self-management of the disease impact on the life span of a person with HIV/AIDS. It has previously been mentioned that women have less access to health care than men do and are more likely to prioritise the health needs of others. This impacts on the course of the disease and their lifespan [Marks 1998].

Until recently there was very little known about HIV/AIDS and women due to the male research bias. According to Women Alive [1999] investigators and researchers prefer to do what is familiar and comfortable. They give the example of a wasting trial of women, which required doctors to measure clitoral size – a requirement that made some male doctors very uncomfortable. [P2 Women Alive, Summer 1999]

According to Lucy and Zangeneh [1999] a gender survival gap [that is, differences in lifespan between men and women] exists with only "small insignificant treatment trials for women with HIV/AIDS". If these studies find gender differences they are often unpublished and no funds allocated to larger, follow up confirmatory studies. Thus findings are often not tested and are unable to be implemented. Tirdad and Zangeneh [1999] describe the treatment of women living with HIV/AIDS as a "shot in the dark approach"

The exclusion of women from many research studies prolongs the male bias in research. Johnson [2000] states that women still only comprise about 12% of the total participants in clinical trails. Key questions regarding the biological differences in female and male experiences in AIDS remains unanswered. This affects women getting an accurate diagnosis and treatment.

New lessons learned about women and HIV/AIDS are mainly coming from two large studies that are currently underway in America:

The Women’s Interagency HIV Study [WIHS]
HIV Epidemiological Research Study [HERS]

Both studies have enrolled large numbers of women living with HIV and are tracking the women to determine the course of the disease. However, given that the studies do not also track men it is difficult for any comparisons to be made between men and women.

Issues identified in the research to date include:

Access to care

Women come for care at a later stage of the disease and may have access to fewer services than men. This is an important fact, which results in women not living as long as men. [MacNeil 1999]

Domestic violence

Violence is an integral part of many women’s lives, which impacts on both mental and physical health, as well as access to health services and support.


Lack of social services

In many cases women living with HIV/AIDS are unable to afford appropriate treatment and care. They are also unable to access welfare services. Discrimination in social services access impacts negatively on women’s quality of life.

3. Needs and issues of special groups.

As noted previously, women living with HIV/AIDS do not form a homogeneous group. For the purposes of this paper treatment issues for young women and lesbian women will be discussed.

3.1 Young women

Young women between the ages of 15 – 19 constitute the group most at risk for HIV infection and in the past few years the number of young women living with HIV has grown substantially [UNAIDS 2000, Anderson 2000]. Consensual Sexual activity and sexual abuse both occur frequently and increasingly in younger children.

Many factors make young women vulnerable to infection:

Biological reasons. Over and above the fact that, in general, women are biologically more vulnerable than men to infection, young women whose are less developed physically will be even more vulnerable

Non-consensual sex. Research by Makubalo and Varga [1997] revealed high levels of male on female violence and powerlessness. Physical abuse and helplessness overshadow nearly every aspect of girls sexual lives. The first sexual experience for most girls is coerced or forced.

Sexual abuse. There are high levels of sexual abuse in South Africa, much of which goes unreported. Figures from a sexual abuse clinic in Harare [1998-1999], which sees young people [almost exclusively girls] from ages 0 –16 noted the following [UNAIDS 2000]

AGE GROUP PERCENTAGE TESTING POSITIVE
7 %
8%
6 %
13-16 12%

Rape. South Africa has a high incidence of rape. This has been exacerbated by the myth that sex with a virgin will cure a man of HIV.

Sex with older men. Young women are often pursued by older men and given money, gifts or favours in return for sex. Although a young woman may "consent" to sex, the relationship is one of unequal power, which is very much on the man’s terms.

Studies show that girls are sexually active at an earlier age than boys are. Teenage pregnancies are an indication of unprotected sexual acts. In 1995 teenage pregnancies accounted for 330 per 1000 pregnancies. [Abdool-Karim 1998]

Teenage pregnancies may result in young women leaving school. This in turn may impact on her ability to find employment and perpetuates women’s socio-economic status.

TABLE 3: Percentage of Young women who dropped out of school because of pregnancy.

AFRICAN

COLOURED

INDIAN

WHITE

31%

8%

4%

11%

Source. Hurt and Budlender

Treatment knowledge is limited since few young women or young men have participated in clinical trials. At present, opportunistic infection treatment for post-pubertal adolescents follows clinical guidelines for adults. As pubertal / hormonal changes may affect medications, dosage is based on the Tanner staging rather than age.

TABLE 4: Dosage according to Tanner Stages

TANNER STAGE

STAGE OF DEVELOPMENT

DOSAGE

Tanner Stage I / II

Early puberty

Pediatric dosing

Tanner Stage III / IV

Mid-puberty

Dependent on whether growth spurt is complete or not

Tanner Stage V

Completed puberty

Adult dosage

Source: Anderson 2000

3.2 Lesbian women

Women to women transmission appears to be a rare occurrence, however there are lesbians living with HIV. Statistics from the US as at the end of 1998 showed that of the 109 311 women living with HIV, 2 220 women identified as lesbian or bisexual. Data from South Africa of lesbians living with HIV is non-existent – and women with HIV/AIDS are assumed to be heterosexual. At the session on lesbians and AIDS at the "Listen, Learn and Live to Break the Silence – 2nd National conference of People living with HIV/AIDS, held in March 2000, which was attended by 30 women, the issue of the invisibility of lesbians was highlighted and the challenges this poses, discussed.

Heterosexual, bisexual and lesbian women share many of the same health concerns and issues. Lesbian women often have little information about their health needs, which may include:

Need for information and screening for cervical and breast cancer
Treatment for STI’s
Mental care issues
Substance use
Domestic violence
Lesbian pregnancy

The treatment needs for lesbian and bisexual women living with HIV/AIDS need to be researched. Health care providers must begin to provide appropriate, informed health care in a non-judgmental or non-discriminatory way.

4. Some Treatment Issues

There are three basic purposes for treatments available for people living with HIV:

Treatments used to prevent opportunistic infections [prophylaxis] and drugs to treat opportunistic infections

Treatments used against the virus itself [anti-retrovirals]

Treatments used to relieve or eliminate symptoms associated with HIV disease and the side effects of other treatments

[Australian Federation of AIDS Organisation / NAPWA – Australia 1999]

There are differences between men and women in the course of the disease, which are reflected in differences in viral load and opportunistic infections. The implications this has for treatments will be discussed below.

4.1.Differences in Viral load, CD4 count and disease progression


"In the field of AIDS we still have only hints about differences in dosing, clues of metabolic differences and suggestions of what viral load levels could mean in terms of HIV progression in women" [MacNeil p4 1999]

HIV positive women may have a higher risk of progressing to AIDS than men with the same viral load [MacNeil 1999]. This finding was based on a study of drug injecting women and men but may or may not be applicable to non-injecting women. This means that women living with HIV who inject drugs can develop AIDS with less virus than positive men who inject drugs. Based on the results of the study questions were raised about whether the initiation of anti HIV therapy at a lower viral threshold may be justified. The study recommended that viral load should be considered to be a gender variable [Michelle 1998].

In January 2000 a meeting of scientists and treatment activists was held in the United States, to discuss and debate the issue of gender differences in treatment. The following points, based on research to date were highlighted:

Women may have lower viral levels than men in early HIV disease [in the first five years of infection]

Differences may not persist over time – the cause and significance of the differences remains unclear


No changes have been recommended for the use of anti-HIV therapy among women

Racial and ethnicity differences in viral load may be equally important to gender differences and should be explored
[Project Inform: Perspective No 30 August 2000]

4.2 Combination therapies and anti-retrovirals

The decision to begin combination therapy is made on the following:

Viral load
Damage done to immune system [CD4+ count]
Ability to keep up the treatments on a regular basis for life

The response of women to drug therapies is the area where most information is needed. There are too few women enrolled in clinical trails to determine whether or not there are differences between men and women. What is known is that women metabolise the drugs at a more rapid rate. [Currier and Johnson 1997]. In 1995 a Dutch study showed that AZT released 42% slower in a woman’s blood. This impacts on the correct drug dosage that is needed to suppress HIV in women. Dr Katheryn Anastos, principal investigator from the Women’s Interagency Health Study [WIHS] states". drugs are working, which is extremely important and saving lives but we may be blasting women with higher doses than we need to" [Gender –AIDS 468 1999]

According to Project Inform [1999] the differences in viral loads between men and women make interpreting guidelines for the onset of antiretroviral therapy difficult. For example, a women with a CD4+ count of 475 and a viral load of 6000 copies/ml is roughly at the same risk of disease progression as a man with a similar CD4+count but with a viral load of 10 000 copies/ml. Guidelines would suggest that the man consider anti-HIV therapy but that the women wait until her viral load is greater, even though she is at the same risk of disease progression as the man is.

The AT LAST study [Anti-retroviral Therapy Looking at Sex and Treatment] is underway in various cities in the USA. The study will evaluate the differences between men and women by examining the impact of a treatment regimen on hormones, menstrual cycles and the impact of hormone levels on the risk of developing metabolic changes.

An issue relevant for women is the impact of anti-retroviral treatment on pregnancy. At present the guidelines for optimal anti-retroviral therapy in pregnancy are the same as those for non-pregnant adults. Anderson [2000].

More research is needed to determine the effects of the long term of anti-retroviral treatment on the fetus. In conclusion, present knowledge would suggest that the drugs are equally effective in women and in men. However, drugs may be more toxic in women. Women tend to show more side effects or have more severe side effects than men do. For example, women are more likely to develop a severe rash as a side effect of Nevirapine than men are. Drug levels in the blood are higher in women.
It is obvious that more information is needed to understand both the difference in viral load in men and women and what this difference actually means.
[Project Inform 1999, Project Inform 2000].

Some critical research Issues for the future include:-


Identifying the cause of lower viral levels in women during the first five years of infection
Determining whether men and women harbour and clear HIV differently
Determining whether gender differences exist in CD4+ cell count and the dynamics of cell production and destruction
Understanding the effect of hormones and other factors on viral load and CD4+ cell count
Determining if race and ethnicity affect HIV
[Project Inform. Perspective No 30]

Other areas for research include:
Re-infection rates and effects
Nutritional status and nutritional supports
Young women in clinical trials
The emerging epidemic in older women in relation to the treatment implications for menopausal and postmenopausal women.


4.3. Differences in opportunistic infections, cancers and symptoms

HIV / AIDS treatment issues and health care for women must include: -

general health
specific to AIDS symptoms that affect women
gynecological issues and gender linked health issues such as anemia, hormone replacement,
pregnancy related issues [for example how pregnancy impacts on women living with HIV/AIDS]

4.3.1 General health

General health issues in women refer to illnesses, infections and health problems that are not necessarily related to women or HIV infection, for example, high blood pressure, diabetes. It is crucial to see women holistically, not just as women living with HIV/AIDS, as this can hide other potential health problems.

4.3.2 Specific HIV/AIDS symptoms

In a study completed in 1994, the top 5 opportunistic infections in women were bacterial pneumonia, Pneumocystis Carinii Pneumonia [PCP], Candidiasis, wasting, Mycobacterium Avium Complex [MAC]. For men the list is different: PCP, MAC, Cytomegalovirus [CMV], wasting and bacterial pneumonia. Whilst it is clear that there are differences as illustrated in the study it is difficult to say how relevant the information is. The study included only 253 women out of a total of 1883 people. Furthermore, issues that would have a direct impact on prevalence of opportunistic infections, such as psychosocial and lifestyles were not reported. The profile of opportunistic infections will differ from country to country due to a whole range of factors including disease profile, nutritional state. More research is needed to determine the different patterns between men and women in the Southern African context. According to Project Inform [2000], gender differences have been noted in certain infections associated with HIV disease. This may include more frequent candidasis [vaginal, esophageal and oral thrush], herpes infection and types of cytomegalovirus [CMV] disease. It is unclear as to whether these differences are biologically based or due to psychosocial issues and treatment access. Women are also prone to gynecological problems associated with HIV infection.

Some studies have shown that the way in which conditions manifest is different in men and women. For example, Karposi Sarcoma in lungs is far more aggressive in women; this is due to biological differences.

Hormones are chemical substances that are secreted by the body that regulate metabolism, energy levels and reproductive capability. HIV impacts on hormonal levels and functioning. For example, abnormal menstrual cycles, weight loss, gynecological infections, headaches and fatigue in women may be related to decreasing estrogen levels. Hormone replacement therapies are being used in both men and women living with HIV/AIDS in symptom management and weight maintenance. In women, much of the focus is on the use of hormone therapy as birth control, which may not be the central issue for women. According to Project Inform [Discussion Paper 1999] the study of HRT is at an early stage. They state that there are many unanswered questions about the relationship between hormone levels and the immune system, drug metabolism and body composition.

Anemia is very common in 70 – 80% people living with HIV. There are many causes of anemia – low red blood counts, low vitamin B12, iron deficiency, a thyroid that may not be functioning correctly, heavy menstruation or the effects of medication. There is a gender dimension to anemia in that many women grow accustomed to feelings of fatigue and may not report symptoms to their health care providers. Alternatively, health care providers may not realise the impact that anemia has on women’s health in general [Women Alive 1999 – [email protected]].

4.3.3 Gynaecological Problems


Anderson [2000] notes that gynecological problems are common among women living with HIV/AIDS and are often present at the time of initial presentation for care and evaluation. Symptoms of gynecological problems may include:

unusual or odorous vaginal discharge
lower abdominal pain
irregular menstrual periods
genital warts
pain and itching around the vagina
painful sex
burning or pain when urinating

It is important that women with HIV/AIDS have regular gynecological examinations and that women are encouraged to seek treatment at the onset of symptoms.

I] HIV and Menstrual complications


A normal menstrual period should occur every 21 – 35 days and last between 2-6 days. According to Marks, many HIV-positive women report changes in their menstrual cycle – including longer, shorter, heavier, irregular or painful periods. These irregularities are also found in HIV negative women. However, one difference is that HIV-positive women may experience the absence of any menstrual cycle [amenorrhea] at a much younger age. According to Project Inform [1999] many doctors view abnormal menstrual cycles as an inconvenience rather than a serious medical condition, and thus do not address them aggressively, for example with HRT, which may lead to longer survival. Problems with menstrual bleeding can cause or can be a symptom of anemia; it is thus vital to monitor regularly.

HIV infection may result in abnormal menstrual cycles as a result of weight loss, chronic disease, substance use and treatments used for appetite stimulation or contraceptives. According to Anderson [2000] the effect of antiretroviral therapy on menstruation has not been well studied – however, excessive menstrual blood loss has been reported with ritonavir.

A study of ten women, who were on HAART and had normal menstrual cycles before initiating HAART, showed that some women experienced disturbances in their menstrual cycles with excessive menstrual bleeding [hypermenorrhea] making them at risk for anemia.

A report from 6th Conference on Retroviruses and Opportunistic infections presented a study, which reviewed the menstrual diaries from 800 women, living with HIV and 270 HIV negative women. The study found that being HIV-positive slightly increased the chances of having a menstrual cycle shorter than 18 days or longer than 90 days. Early HIV infection has little effect on menstrual cycle. However when immune deficiency advances this pattern changes and women experience shorter than average, longer than average and more variable cycles.

II] Human Papilloma Virus


The Human Papilloma Virus [HPV] is a sexually transmitted virus that causes genital warts. Genital warts are linked to developing cervical and anal pre-cancerous dysplasia and cancer.

Women living with HIV, particularly women who have a low CD4+ cell count, have both a higher rate of, and severity of HPV related cervical dysplasia.

Furthermore, anal HPV and dysplasia is common in women living with HIV, and is linked to anal cancer. It is suggested that regular anal examinations are done to detect dysplasia.

III] Cervical Cancer


A large study conducted by the National Institute of Child Health and Human Development in Bethesda, Maryland has revealed a significantly high prevalence of low-grade cervical dysplasia in HIV positive women. Cervical dysplasia is characterised by abnormal growth or alteration of cells on the cervix. In some cases this may lead to cancer of the cervix.

It is also important to note that pap smears performed on HIV positive women are more likely to give false negative results than those given to HIV negative women [Dr Goodman, reported by
[email protected]] There is a strong motivation that more sophisticated tests – such as the use of colposcopy should be advocated for women living with HIV. At the very least, women living with HIV should have a Pap smear every 6 months. Women with abnormal pap smears should be tested even more frequently.

IV] Pelvic Inflammatory disease


Pelvic Inflammatory disease [PID] represents a range of inflammatory disorders of the upper genital tract which would include fallopian tubes, uterus, ovaries and in advanced stages, abdominal lining. According to Project Inform [2000], PID appears to be more prevalent, severe and resistant to treatment in women living with HIV/AIDS. Furthermore, studies indicate that the relapse of PID occurs more in women with compromised immune systems. The Centres for Disease Control recommends hospitalisation of women with PID, as intravenous antibiotics should be administered.

V] Vaginal Candidiasis

Fungal infection of the vulva and vagina is one of the most common opportunistic infections in women. It is the most common initial manifestation of HIV and it increases as CD4+ cell counts decline. In women with compromised immune systems the primary location of the candida infection may shift from the vagina to the mouth.

Vaginal candidiasis can be successfully treated through the use of topical creams and suppositories. If the candidiasis is unresponsive to treatment the use of an antifungal drug fluconazole can be used.

4.3.4 Pregnancy related issues

I] HIV and fertility

Recent studies in Africa highlight that HIV may have an adverse effect on fertility in women who are asymptomatic and symptomatic. [Anderson 2000 cites studies by Desgrees 1999, Lee 1998 and Zaba 1998]

In Uganda a study revealed a hierarchy of likelihood of pregnancy:

Most likely: HIV negative women
Less likely: HIV positive [asymptomatic]
Least likely: HIV positive [symptomatic]

The study also revealed that pregnancy loss was more common in women living with HIV [Anderson 2000].

II] Pregnancy and its effects on women living with HIV/AIDS

In both HIV positive and HIV negative women there is a decline in absolute CD4 counts in pregnancy. Studies have shown that there is no difference between women living with HIV who are pregnant and those who are not when CD4 counts have been tracked over time. This suggests that pregnancy does not accelerate decline in CD4 cells. [Anderson 2000]. However, added variables such as younger pregnant women, nutritional status may impact on the effects of HIV/AIDS. Further study is needed.

Late stages HIV or AIDS may result in certain pregnancy complications as noted in Table 5

Table 5: Pregnancy outcomes and relationship to HIV infection

Adverse outcome

Relationship to HIV infection

Spontaneous abortion

Limited data but evidence of possible increased risk

Perinatal mortality

No association in developed countries, but data is limited
Evidence of increased risk in developing countries

Pre-term delivery

Evidence of possible increased risk, especially with more advanced disease.

Fetal malformation

No evidence of increased risk

Source: Anderson 2000

Pregnancy is associated with various conditions that may have specific treatment implications for women living with HIV:

increased yeast infections
bacterial vaginosis
primary HSV infection during pregnancy associated with spontaneous abortion and pre-maturity

Furthermore, common opportunistic infections in women living with HIV may impact on the pregnancy:

Genital warts
Syphilis

4.3.5 Emotional / psychological issues
As discussed previously the World Health Organisation definition of health includes mental health as an important component of well being. Discussing treatment issues that affect women should also extend to psychological and emotional health. The management of HIV/AIDS requires a holistic response where the mental health is as important as the physical health. It has been well documented that mental illness can impact negatively on physical health and physical illness can in turn impact on mental health.

Mental illness can take many forms and can often be successfully treated. Stress and trauma often bring on mental illness. These are some of the realities of living with HIV/AIDS. The South African response to HIV/AIDS has focused on the training of health care workers, usually nurses as counsellors to do pre, post test and ongoing counselling. Often counselors and doctors are not sufficiently trained to recognise mental illness and it may be necessary to get treatment from a social worker, psychologist or psychiatrist. For the purpose of this paper the most common mental problem in women living with HIV/AIDS, depression, is discussed.

Depression


Women are more likely to suffer from depression than men are. Signs of clinical depression can be mistaken for advancing HIV disease. Clinical depression causes changes in both the body chemistry and the brain. Certain HIV medications can contribute to mood changes or depression. Also low levels of testosterone, or vitamins such as B-12 will contribute to depression.

There are warning signs, which may include loss of interest or pleasure in activities, irritability, social withdrawal, loss of energy and changes in eating habits and in sleeping patterns. It is important to educate both women living with HIV as well as health providers, caregivers and counselors to recognise the signs and to treat women holistically.

Depression can be treated in many ways depending on the severity. In some cases attending support groups and/or attending individual counselling as well as being supported by family and friends may be sufficient. In other cases it may be necessary to take medication specifically for depression. It is important to discuss the implications for medication on any other treatment that a woman may be on.

D. Issues for the Treatment Action Campaign


Non-governmental activist organisations have been at the forefront of making treatment issues and information accessible to people living with HIV and their carers. Recently, due to successful global activism and advocacy, there is an increase in research to highlight and promote understanding of the differences between men and women in respect to treatment issues – anti-retroviral therapy and treatment and prevention of opportunistic infections. However, more studies that focus on women living with HIV/AIDS in developing countries are needed, in order to improve the care and treatment women receive. Such research would investigate gender, age, racial and ethnic differences and implication of these for treatment.

This section highlights issues, taken from the paper, that require attention. The issues divided into four categories capacity building, service delivery, research needs and advocacy. Within these categories women’s practical needs have been distinguished from strategic interests.

Capacity Building


Build skills in women so that they are able to live more positively with HIV. This would include:
recognising and responding to opportunistic infections through the treatment literacy programmes
changing women’s health seeking behaviour
Enabling women to interact with more confidence with health care providers.

Educate health care providers in:
differences in the way HIV/AIDS manifests in men and women
distinguishing between physical and mental illness
treatment issues for women
adequate screening to diagnose gynecological problems

Service Delivery

Practical needs

Improve women’s access to health care:
Increased services for general / HIV specific health that is not only focuses on reproductive issues.


Improve the quality of health care that women receive:
better access to drugs and treatment
more focus on preventative treatment
address the attitudes of health care workers
holistic approach integrating physical, social, psycho-emotional services
Assess and respond more effectively to symptoms such as fatigue, difficulties sleeping, skin problems, cough,etc.
Specific Services
Annual PAP smears

Research

Strategic Interest

Challenge the male bias in research

Practical needs

Increased ethical research on women in Africa to ensure that disease is understood and properly managed.

Focus on follow-up studies to confirm findings around women and HIV

Greater access for women into clinical trials, ensuring that women give informed consent

Identification of specific treatment issues for women

Advocacy

Strategic interests

Challenge gender inequality at all levels, but with a focus on the health and welfare sectors

Challenge the notion that women’s key role in society is reproduction, and promote a more holistic approach to women living with HIV/AIDS

Practical needs

Advocate for strategies that will reduce the feminisation of poverty

Identify key issues in the Department of Health Plan. For example, challenge the Department of Health’s latest strategy to allow women to have only 4 pap smears in the course of her life. Advocate for more pap smears and for the use of more sophisticated equipment for women living with HIV/AIDS.


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