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Self-help the best help for living with Aids

Juliana Brobbey thought she was 'no longer human' when she learned in 2004 that she was HIV positive. In her West African country of Ghana, the stigma linked to the virus that causes Aids is so powerful that some see it as a stain of immorality.

Rail-thin and weak, 42-year-old Brobbey's physical and emotional health had plummeted by the time she arrived at an HIV/Aids support group in Ghana's capital, Accra. But at the group she found camaraderie and hope and was persuaded to seek medical help.

'Now I take ARVs [antiretroviral drugs]. I work. I travel. I can do anything,' said the mother of six through a radiant smile.

As Aids ravages Africa, where 26 million people are infected with HIV, and no cure has yet been found, a ray of hope for those living with the disease is increasingly coming from support groups founded and run by the patients themselves.

In the past it was mostly the formal health sector and non-governmental organisations (NGOs) that assisted people living with HIV/Aids. But a rising trend is for HIV-positive people to support each other through organised groups.

Typically numbering several dozen members, the support groups might meet several times a month, promote 'positive living' and provide a sense of community, counselling and income-generating activities. Professionals are invited to meetings to speak on health issues and group leaders often attend local workshops.

The groups also complement formal health services by acting as an organising hub for financial aid, food donations and government-subsidised medicine.

People living with HIV/Aids were more comfortable speaking about their issues with other patients, said Francis Collins, programme manager for Network of Persons Living with HIV/Aids (or NAP+) in Ghana. 'They have common problems, a common vision and a common mission,' he said.

While Ghana had only one support group in 2001, the country now has nearly 200. In Kenya there are more than 300 such groups and in Uganda more than 400, according to NAP+, which has national affiliations in 50 African countries.

The emotional and physical impact these groups have on their members is profound. Many patients come after being rejected by family and after their health has significantly deteriorated. But within months they are often strong again, working and filled with hope for their futures.

Lucy Mensah plotted to kill herself when she learned in 1999 of her positive status. If she was run over by a bus, she reasoned, no one would ever know.

The nurse that gave her the test result advised her not to tell her family, fearing a backlash, and sent her packing with little medical or emotional support.

But not long after, Ms Mensah, now 49, attended a workshop in Accra that transformed her outlook. She learned how to live a positive life, how to stay healthy and strong. Inspired by her new knowledge, she began giving testimonies at schools and churches.

'Anytime I shared my experience, I felt relieved and it gave me strength,' said the mother of three. 'I decided that going to outreach programmes would be my life.'

But in 2000, Ms Mensah volunteered for a nationally broadcast radio commercial that brought attention to the epidemic - and broke the news of her status to her family. 'My father and brother said that I had disgraced the family and they kicked me and the kids out of the house,' said Ms Mensah, who with the help of friends found alternative housing.

But as successful as many support groups are, they lacked professional staff for effective management and fund-raising, said Bernice Heloo, executive director of the Ghana-based NGO Pro-Link. More educated and wealthier patients tended to go to private clinics for treatment where they could keep their status private, she said.

'I see it as division of labour,' said Ms Heloo. Governments procure medicine, handle logistics and provide medical facilities; the patients themselves form and run support groups; and NGOs build their capacity to thrive,' she said.

In 2004 Ms Mensah won an international award for courageous leadership but her family still hasn't welcomed her home. 'I don't think about it. I'm going forwards, not backwards.'

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