Sunday Times (Johannesburg) - September 9, 2007

The late Rev Fikile Mgcoyi dedicated the remaining years of his life, after retirement, to the struggle for antiretroviral treatment in the Queenstown area of the Eastern Cape. He was a school principal and Moravian pastor at Shiloh Mission near Whittlesea.

Like every religious minister, he was distraught at the number of funerals he had to conduct and was deeply affected by the burials of parents of young children. The tears of the children stirred his pastoral heart and when he heard about the Treatment Action Campaign, he decided to visit their offices in Cape Town to find out for himself if medication was really available.

He returned from Cape Town with hope and excitement and started to write letter after letter to partner churches in Germany. He explained the devastation caused by HIV/Aids in his parish, where many parents returned from the city gravely ill. Generous funding soon flowed in.

In 2003, the price of a month's supply of triple therapy was R720 for one person and public hospitals had no antiretrovirals. The minister approached a private doctor in Whittlesea to discuss treatment. The doctor was delighted to hear that the church was willing to pay for antiretrovirals. Some of his patients had medical aid schemes but, until then, others had no choice but to die.

While community members were not convinced that treatment was available against this killer disease, they respected Umfundisi (teacher or preacher) Mgcoyi and knew he was committed to the truth. His project became known as Masangane (embrace, in Xhosa) and it was a honour for a parish member to be recruited as a volunteer helper.

Patricia Dakana was one of Masangane's first patients. She knew she was going to die. She had learnt about HIV at her Johannesburg workplace. When she recognised the symptoms, she resigned and returned home to her village near Queenstown. She hoped that God might give her a few more months to say goodbye to her children.

While she was bedridden, she heard that Umfundisi wanted to help people with Aids. Patricia asked a Masangane volunteer to visit her.

From that day on, her life changed. There was joy among volunteers when Umfundisi arrived at her home to take her and two volunteers to the doctor.

Patricia was a bit bewildered by all the tests but the volunteers, who had recently attended a treatment literacy course run by the TAC and M decins Sans Fronti res (Doctors Without Borders), explained every detail. Patricia was impressed by their knowledge and so touched by their unconditional love that she overcame all fear of the unknown.

When the doctor revealed her very low CD4 count of 22, the volunteers tried hard to hide their shock.

Neighbours gossiped and some shunned her but Umfundisi and his nursing sister wife visited twice a week, armed with prayers and treatment lessons. One volunteer was assigned to visit Patricia daily to ensure that her medication was taken at the same time each day.

Patricia followed all the instructions but she did not get better. On the contrary, her health deteriorated. Her entire body was covered with very painful shingles. Relatives advised her to stop the treatment at once.

But Umfundisi realised that Patricia's symptoms were opportunistic infections. He explained, with much patience and using creative Xhosa words, that her immune system had started to fight again and that her fever and sickness were good signs.

He had learnt about the immune reconstitution syndrome at the treatment literacy course. He knew that patients with a low CD4 count often became ill before they got better. This knowledge turned out to be a lifesaver, as Patricia trusted Umfundisi and did not miss a day of treatment. She began to recover slowly. Three years later, her CD4 count had reached 480 and she was not suffering from any illnesses or complications. It was time to return to Johannesburg to find a job, as Social Services had taken away her disability grant. Her children begged her to stay.

Fortunately Masangane has become a solid project, with enough funds to employ Patricia as a treatment helper and care worker for orphaned children. Her husband was so grateful that he turned the land around the Masangane office into a vegetable garden. Masangane spinach has since become a big hit.

Umfundisi Mgcoyi can no longer see the radiant smile on Patricia's face. He died of throat cancer in 2005. In his last interview given to Aids researchers, he expressed his biggest wish - that one day HIV/Aids would be treated like any other chronic disease and people could share their status like sharing a diabetes or high blood pressure diagnosis. Will his wish ever come true? - Submitted by the Rev Renate Cochrane. Masangane volunteer project adviser Patricia Dakana and her family gave permission to share her story and her photographs as a tribute to the man who saved her life.

# Clinical psychologists Khumo Seopela and Kgamadi Kometsi offer HIV counselling free of charge every Saturday morning. Counselling is offered between 9am and noon at 4 Biermann Avenue, Rosebank, Johannesburg. To book, fax 011-280-5151 or e-mail: counselling@sundaytimes.co.za. Bookings are taken on a first-come, first-served basis. The sessions will take place in private.

# Everyone Knows Someone is a Sunday Times campaign that encourages people to know their HIV status. It aims to destigmatise the infection. We would like to publish the personal experiences (and, where the writer feels comfortable, photos) of South Africans living with HIV or caring for loved ones with the virus.

E-mail your story to: everyoneknows@ sundaytimes.co.za or fax it to 011-280-5151.

# A group of doctors involved in HIV/Aids management programmes are providing free antiretroviral treatment and follow-up blood tests and counselling for HIV- positive patients. The doctors will provide this service to 50 patients a month on a first-come, first-served basis. Patients must be HIV-positive and must have had a CD4 count already taken.

The service will be offered at the Primary Care Centre, Louis Pasteur Hospital, Schoeman Street, Tshwane CBD; and the Bambanani Medical Centre, 186 Cowen Ntuli Street, Middelburg CBD, Mpumalanga. Each site will accommodate 25 people.

Contact Sandra on 012-336-6031 for appointments at the Primary Care Centre and Sister Pretorius on 013-282-5218 for appointments at Bambanani centre.

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