ZAMBIA: Access to ARV therapy - through the eyes of women
Members of NZP Plus confront the UN
Credit: WHO - RIACSO
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The World Health Organisation (WHO) has declared the lack of access to Anti Retroviral Therapy (ART) a global health emergency and set itself the target to ensure 3 million of the world's most deserving and vulnerable people are reached with ART by 2005. Emphasising "urgency, equity and sustainability" the '3 by 5' strategic framework has raised hopes for an intensification and integration of joint humanitarian efforts, both to ensure that lives are prolonged by closing 'the treatment gap' where it is widest, and to simultaneously change the harsh social, economic and political realities that millions of women and young girls in Southern Africa face: realities that are sharply described by this verbatim account of the situation that the members of the National Zambian Positive People's Association (NZP+) face. The 17 women related their story to members of the Secretary-General's Task Force on Women, Girls and HIV/AIDS in Southern Africa in September 2003.
“We women living with HIV and AIDS face challenges. We are not working because of the stigma that is everywhere. Businesses are looking at their profit, so it is difficult to find work, no matter how educated you are, because of fear that we are often sick and not able to work. The most serious problem facing us as women is poverty. Poverty is killing us. We know how we can live positively. Many organisations have taught us. But you can never live a positive life without money. Most of us are widowed. We are left with the burden of children, taking care of them, paying for their schooling and feeding them. We can’t even afford two slices of bread, not even a cup of tea. So it is very difficult to live a positive life. There are so many of us, but how can we support each other if we can’t even buy our own bread?
Members of NZP+ have spoken to the government, provided information, but we are not benefiting from ARVs. We hear that ARVs are supposed to be provided at the government hospitals, but no-one has told us where the line is! Yet we hear rumours that certain influential people are getting special treatment, secretly, at the hospital. And where are unemployed women supposed to find the 40% needed to contribute to the costs?
We have received skills training, but have no market. We make red AIDS ribbons and doormats to make an income. I even force them on my doctor in exchange for medicine.
We don’t know where to go once we have the skills. How do you get information about marketing possibilities without money, without transport, without even a telephone? We want to work. Money is coming into the country because of HIV, but why is this money not coming directly to us? Look at the number of children we take care of.”
A quick count was done to determine how many dependant children these seventeen women looked after. It worked out to 49.
COMBINING HARDWARE AND SOFTWARE
While the clearly defined focus of the ‘three by five’ initiative promises to address the right of the NZP+ members to receive affordable ART, what about the stigma, poverty and social exclusion that were also undermining their heroic efforts to “live positively”?
The sustainability imperative of ‘3 by 5’ depends on an enabling environment that empowers and affirms people like the NZP+ women; an environment that promotes ‘a positive state of physical, mental, and social well-being (the ‘software’) and protection from disease and infirmity (‘hardware’ implying drugs, clinics, food aid, transport logistics etc)’. Without the ‘software’ the ‘hardware’ is futile - the same futility that overworked doctors in rural hospitals feel when they discharge patients, healed at whatever cost, back into a sick environment, knowing that is only a matter of time before they will be back again.
The largest ARV treatment gap is in Sub-saharan African countries, with only 2% of people needing ART currently receiving it. WHO has thus set equity as an imperative, but as activist Alex de Waal of the African Civil Society Governance and Aids Initiative (GAIN) points out, “the real constraint in scaling up ART is not the price of the drugs, but the capacity to deliver and administer them.” He expresses doubts about whether the global target of three million, if reached by 2005, will reflect the proportion of African AIDs patients that it should. “This is field that cries out for democratic mobilisation,” he pleads.
Echoing de Waal’s views, Mark Heywood of the AIDS Law Project at the University of Witwatersrand says, “success of the '3 by 5' initiative depends on the meaningful participation of communities. In order to achieve it, we must take risks. It requires active advocacy from governments to support voluntary testing and counselling services. It also means that WHO must be prepared to side with communities against governments.”
Pragmatically, it is equally unlikely that the '3 by 5' initiative will succeed in Southern Africa without government support. While the equity and urgency imperatives compel WHO to engage as directly as possible with women like the seventeen NZP+ members crying out for practical humanitarian support, the sustainability imperative demands that WHO supports government in turning around the steady deterioration of health systems in the region. At a recent UN RIACSO Health Task Force seminar on the ‘3 by 5’ initiative, WHO Representative in Malawi, Dr Bill Aldis, pointed out that while civil society needs to continue to mobilise and advocate for cheaper medication, “the economic sustainability depends on complementary efforts to ensure access and encouragement. We need to have programmes that deliver results and shift both mindsets and resources. When the benefits can be shown, plenty of funds will follow. But government's role as the custodian of public health must be affirmed, particularly in ensuring that case management guidelines are in place for first line treatments and that practitioners are trained and certified. It is also essential that first line treatments be uniform throughout the country – even the region - to prevent cross-border confusion,” he said.
FACING THE FUTURE
Clearly people on ART will live longer, but not necessarily better, lives. IRIN News reports of an HIV positive social worker, a member of the Burundi National Association of HIV positive People (ANSS), who had a difficult choice to make. In 1999 she found that her CD4 count had begun to fall, indicating that ARVs were needed to keep her immune system functioning. She told IRIN she had either to sell all her possessions including her home to meet the costs of ARVs and run the risk of leaving nothing to her daughter, or die and miss the chance to provide her daughter with parental care, into the critical teenage years.
Eventually, she sold everything to go onto ARV therapy and has not regretted the decision. Her daughter is now 14 years old. "I believe many HIV+ people like me would prefer to get whatever additional period of time to their life to give a push to their children," she said.
This story illustrates that the '3 by 5' initiative can never be a sustainable or desirable solution in itself. Participants at the recent RIACSO Health Task Force Seminar agreed that prevention and treatment were not opposite ends of a continuum, but simultaneous programmes, which would be effective if pursued within an ongoing, holistic strategy that included:
- effective nutrition, including practical guidelines (both technical and operational);
- psycho-social counselling and support that maintains effective treatment regimens rather than a simple emphasis on confidentiality;
- ongoing prevention and education on safe sex;
- joint efforts to create conditions of social well-being and economic security.
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