In-depth: 'Lazarus Drug': ARVs in the treatment era
AFRICA: Treatment criteria - deciding who gets to live
Ugandan Augustine Kishangaki visits Elly Tumusine, a nurse and HIV-positive activist who just recently started on ARVs after being very ill
JOHANNESBURG, 30 August 2005 (IRIN) - Every Saturday a bus brings prisoners under armed escort to a clinic in Machava, on the outskirts of the Mozambican capital, Maputo, to get their antiretroviral (ARV) pills.
The clinic, run by the Italian Catholic charity, Santo Egidio, treats over 2,500 patients, among them 100 inmates from the local jail.
This has caused friction between the charity and the ministry of health, which has complained that it was not informed of the decision to treat prisoners. Santo Egidio has responded that it was up to the department of correctional services to inform the ministry.
But the real issue at stake is: when the need for antiretroviral therapy (ART) exceeds supply, which patients have priority?
The problem arises because Mozambique has been slow to develop national criteria for patient selection: in their absence, non-government ART providers have been making their own choices.
The medical criteria to start treatment - a CD4 count under 200 or stage III/IV of AIDS - are defined by the World Health Organisation, but additional social criteria can vary widely.
The Santo Egidio clinic employs one yardstick, and that is geographical - it will treat any patient in its catchment area. As a Catholic institution, Santo Egidio "places central importance on each and every life", according to its booklet, 'Dream: Treating AIDS in Africa'.
"Every sick person deserves treatment," said Dr Noorjehan Abdul Magid, who works at the Machava clinic. The booklet, however, mentions "priority-setting" for pregnant women, single mothers, teachers and health workers.
The Mozambican networks of people living with HIV/AIDS argue that inmates are unable to live healthy lives and support treatment with good nutrition, exercise, and safe sex, given the prevalence of unprotected anal sex in jail.
"With our scarce resources, it would be better to treat those who have support for compliance from family and associations of HIV-positive people," said Julio Mujojo, executive secretary of the National Network of Associations of People Living with HIV/AIDS.
WHO COMES FIRST?
Social criteria for patient selection in resource-poor settings differ greatly. Botswana, which provides universal free ART through its public health service, prioritises patients with TB, pregnant women, and their children and spouses.
In Uganda it took long debates for members of The AIDS Support Organisation (TASO) to agree that, after medical criteria, seniority of membership would count. TASO, a model support group for HIV-positive people founded in 1987, has 30,000 clients and began providing ART this year.
At the Medecins Sans Frontieres (MSF) AIDS programme in Khayelitsha, South Africa, a committee comprising health professionals, social workers and representatives of people living with AIDS and the community assesses a number of criteria: residence in the catchment area, regular attendance at the clinic for three months, number of dependents, health and income.
A clinic worker visits the prospective patient at home to check residential stability, alcohol abuse, family support, ability to disclose to at least one family member, and preferably to live openly with HIV, and the degree of community activism.
"Patient selection potentially challenges equity in the delivery of services and, therefore, requires clearly defined and transparent procedures," said an MSF study on Khayelitsha.
Gender disparities also determine who gets treated. The experience in several African countries shows that when treatment is free, more women and children access it. When there is co-payment, however small, men are the majority of patients.
On average, in free ART programmes, 60 percent of the patients are women, 10 percent are children, and 30 percent men. When co-payment is involved, 60 percent are men and 40 percent women.
"In ART, gender should be a constant preoccupation, an obsession," the UN Special Envoy for HIV/AIDS in Africa, Stephen Lewis, told IRIN/PlusNews.
Abundant literature also documents the plight and vulnerability of widows: dispossession of home, land and children, ritual cleansing and poverty.
Polygamy is another tricky issue. "If only two adults per family can be treated, who has priority - the senior or the junior wife?" asked Florence Mahoro, an HIV-positive activist at a Parliamentary Forum on HIV/AIDS in Kampala, Uganda, earlier this year.
HIV-positive activists often seek preference as a reward for their contribution to the fight against AIDS.
Mali and other West African countries grant fee waivers for ART to activists who disclose their HIV status in public as part of AIDS prevention and de-stigmatisation efforts. Associations of people living with HIV/AIDS see an influx of new members seeking treatment as a result.
In her study, 'Equity in Access to AIDS Treatment in Africa: Pitfalls Among Achievements', author Aline Desclaux wonders if "public disclosure is not a second payment to access treatment, and a form of confession of having a disease still frowned upon."
But rewarding activists reinforces their key roll in treatment programmes, and helps them gain social acceptance. The drawbacks, observers note, can involve power struggles and conflict within organisations.
"It's a terrible position to decide who lives and who dies, and we should leave it to doctors, who make those decisions daily in operations," said Dr Francis Omaswa, director of health at Uganda's ministry of health.
The networks of people living with AIDS in Uganda disagree. They want to be represented in patient selection committees in hospitals, and they want activists to have preference.
"We give a lot back to society," noted Musisi Josephus Gavah, coordinator of the Mukono District Network of People Living with HIV/AIDS (Mudinet) in central Uganda.
Mudinet has 600 members and is a force for community health and welfare in the district. It offers counselling, AIDS prevention, home-based care and treatment adherence; hands out condoms and mosquito nets for malaria control; provides uniforms, school fees and support to orphans; training in making wills and economic planning, and has 50 groups in income-generation schemes.
Some West African countries require a co-payment for ART proportional to the patient's resources. Senegal, which started Africa's first public treatment programme in 1997, experimented with sliding fees but dropped them in 2001 because the sums collected represented only 12 percent of the costs incurred by the state, and processing the fees was expensive and cumbersome.
Furthermore, studies have shown that co-payment reduced adherence and increased the number of dropouts. The best adherence rates were recorded among patients treated free of charge, and surveys in Burkina Faso and South Africa have shown similar results.
"In Africa, neither patients nor their families can afford this cost," said Dr Bernard Taverne, medical anthropologist at the Institute for Research on Development in Dakar, Senegal.
If ART becomes a financial burden to patients, the risk is that they will abandon treatment - potentially generating drug resistance - or turn to the informal market for ARVs, traditional medicine and non-approved drugs, or migrate to neighbouring countries offering cheaper ART.
This conclusion led a coalition of relief and development agencies to launch an international campaign in November 2004, called Freeby5, urging all ART-related costs to be free to all patients.(www.heard.org.za
"User fees are barriers to equity, efficiency and quality in AIDS treatment," said the campaign's manifesto.
In Mali, Senegal, Burkina Faso and Cote d'Ivoire, ART schemes grant fee exemptions or reductions to certain individuals or groups, such as health professionals, children, HIV-positive activists, patients previously included in research programmes, widows, orphans, pregnant women, retired or destitute persons, and students.
The logic is based on merit, social productivity, dependency, ability to pay, and ethics in research programmes.
The decision-making process includes consensus among programme supervisors, political decisions by health experts, examination of individual situations by multidisciplinary committees, and pre-selection by health professionals, social workers or associations of HIV-positive people.
What emerges from experience and in the literature is the need for checks and balances - otherwise, ART will reproduce existing inequalities, where people with connections have access.
A case in point is Angola, where the state provides free ARVs to about 3,000 patients. Since the programme is government-funded, with no external donors, the selection process is less than transparent.
"There are no controls whatsoever in this programme," Rafael Marques, country director of the Open Society in Angola, told IRIN/PlusNews.
As ART expands in Africa, there will be difficult choices about who gets access to life-saving services, and why. The critical issue of eligibility needs ample discussion among all stakeholders.
"Human rights, law and ethics provide guidance to expanding services in a just and equitable manner," concluded a study by the UN-appointed Commission on HIV/AIDS and Governance in Africa.