- Support for Ethiopian families affected by the AIDS pandemic has come from an unexpected source - local funeral associations, known as edirs.
An edir is a traditional 'burial society' to which members make monthly contributions and receive a payment to help cover funeral expenses in return. Nearly every modern Ethiopian is thought to be a member of at least one edir, either a neighbourhood association, one based at work, or operating along age or gender lines.
"I used to hate the edirs - they had the money to help the sick but did nothing," said Senait Tefra, 16, sitting beside her bedridden, HIV-positive mother. "They'd stigmatise people like my mother and wait for them to die before they offered support, but now that's changing and I'm glad."
Senait's mother, Aster Astatka, looks far older than her 48 years, but thinks she would not be here at all if it wasn't for the help she got from her edir. "I couldn't even walk into the hospital on my own," she said. The edir has helped with money, home care and finding medical treatment, including the antiretroviral drugs that have given her a new lease of life.
Until recently, the burial societies were focused solely on providing for a member's funeral, and in much of Ethiopia that is still the case. However, a number of them, shocked by the mounting toll of AIDS on their membership, started looking at what they could do to tackle the problem.
Policymakers believe that reformed edirs could provide the civil society involvement so vital to combating HIV in Ethiopia, where an estimated 1.2 million people are living with the virus and up to 130,000 have died from AIDS-related illnesses.
"Ethiopia is a very top down society," said Addis Ababa University's Dr Alula Pankhurst, a social anthropologist who has researched the role and history of edirs. "So, if you take as your premise that something as devastating as HIV/AIDS has to be tackled at the grassroots level, then the edir is the only answer."
Donors and NGOs agree. The United Nations Children's Fund (UNICEF), the World Bank and Care International have all included the societies in their HIV policies. "Edirs are in each and every village - even where there are no other institutions, when they call, the people will come," said UNAIDS's Gulelat Amdie.
With records dating back to 1916, the 'Lukanda Tra', on the western fringe of Addis Ababa, the capital, is believed to have been the first, and is again at the forefront of reforms. "Our people were dying - the edirs were having to pay out and we were all taking time off work to go to funerals," recalled the edir's Major Kasahun Feleke, looking the men and women queuing up to make their payments. "AIDS was killing both the young and the old - we felt we had to do something."
The edir changed its constitution to allow members to draw a quarter of their 2,000 birr (US$238) funeral payout before death, and permit a small extra fee to be levied to pay for additional social support from Tesfa, an organisation providing help, particularly in the area of HIV, to 26 affiliated edirs.
Besides giving awareness-raising talks at monthly meetings, Tesfa - meaning 'hope' in the local Amharic language - coordinates home-based care volunteers and provides income-generation schemes for HIV patients. Kasahun, one of the original drivers behind the organisation, said they wanted the edirs "to be for the living as well as the dead".
Tesfa receives additional funding from relief agencies like Care International and Help Age International to support 240 people living with HIV, and has 65 volunteers who give up to three days of their week to providing homecare.
"The volunteers help with everything - from counselling to washing people's bodies, to buying food, to first aid," said programme head Arega Gebrehilwot. "If people need referrals, we make sure they get proper treatment at the hospital. We support the family and train them to help their relatives."
This proactive attitude, involving much of the local community directly in care, has helped break some of the stigma against HIV/AIDS in Ethiopian society. Aster Astatka remembers that when she first fell ill seven years ago, "most of the community would stare at me and say 'look at her', but now my friends come over and eat my meals."
The organisation encourages HIV-positive people who can work to do so. They have provided funds to 150 people to start businesses, giving them both an income and flexible working hours. "They are selling injera [a cereal-based staple food], local beer, or doing metalwork - anything entrepreneurial," said Tesfa's Arega. "Those who borrowed 300 birr [$38] successfully are now borrowing more."
Modernised, federated edirs may be emerging in the city, but in the countryside they are almost nonexistent, yet it is in the rural areas where the edir may be able to play the biggest role. In urban centres there are schools, hospitals, factories and the media; in many rural areas healthcare information is far more difficult to spread and services are more difficult to provide.
Aster Astatka says she wants to see her edir continue to reform. "One day I hope they can provide proper health insurance - it will be too late for me, but not for my children."
Pankhurst said the continued development of the edirs would largely depend on whether donors, NGOs and the government allowed them to find their own ways of coming together and trusting them with AIDS funding.
"I think they can, and I think they must," he said. "The edir is really the only organisation that knows the locality and knows how to help in a sensitive way."
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