Red tape limits transplants for Aids patients to 49 over 10 years

‘More of our brain-dead trauma patients were found to be HIV-positive’

ONLY 49 lifesaving organ transplants have been performed on HIV-positive patients in nearly 10 years in the province.

With the spotlight recently on World Aids Day along with the celebration of the 50th anniversary of the first human heart transplant, Professor Elmi Muller based at UCT’s Department of Surgery and at Groote Schuur Hospital highlighted the struggle she endured fighting for patients with HIV to have transplant surgeries.

Muller spoke during a conference honouring the work of Christiaan Barnard who performed the world’s first humanto-human heart transplant at Groote Schuur.

In October 2008 Muller was the first surgeon in the world to transplant a kidney from an HIV-positive donor to an HIV-positive recipient.

“When I started working in transplantation, my youngest son had just been born.

“When my son was four, I met a patient to who I will call Nomakhaya.

She was a 29-year-old mother also with a 4-year-old son, who accompanied her to the renal unit.

Nomakhaya was HIV-positive and had suffered renal failure about three months earlier.

“She was turned down for dialysis because she was HIV-positive.

“She was in the prime of her life, socially responsible in her duties of motherhood,” Muller said.

She then spoke about a second patient called Ali.

He was 36, living with his older brother in Cape Town selling sweets to make a living.

They fled Uganda just before the 2006 elections when President Yoweri Museveni was re-elected.

In July 2008 Ali started to feel unwell and was later diagnosed HIV-positive and with end-stage renal failure (ESRF).

He was presented at the Renal Unit Assessment meeting early in August 2008. He was just one of many patients in Category 3 – deemed unsuitable for transplantation based on his HIV-positive status– that would be turned down that week.

She said neither patient was looked at as viable economic projects for health budgets.

“Both came up against the logic of a system in which money decided what can and can’t be done to save their lives,” said Muller.

In September/October 2008, she performed transplants on four HIV-positive patients with HIV-positive kidneys.

Among these patients were Nomakhaya and Ali.

“The reaction from the hospital and the provincial administration was to impose a moratorium on these procedures.

“I was asked to do a detailed cost analysis, look at the impact of these patients on dialysis slots and report back to the provincial Department of Health.

“I also received a disciplinary warning for flouting the policies and procedures of the Western Cape Provincial Administration.

“Over the next 12 months my professional and personal life was dominated by the fall-out of my decision to perform the procedures.

“And yet, two years later, as a result of these transplants, the dialysis policies in the Western Cape were changed,” she said.

A major problem is that a large percentage of these people will develop HIVAN – HIV-associated nephropathy (kidney disease resulting from infection with the human immunodeficiency), according to Muller.

“In a country where more and more of our referred brain-dead trauma patients were found to be HIV-positive, it made sense to try and think about a way to incorporate this pool of potential donors into the pool of confirmed or utilised donors.”

Muller’s team is in the process of publishing their eight to 10-year medical results.

The cumulative patient and graft survival at five years is close to 80%, she said.

Provincial health department spokesperson Mark van der Heever said HIV-positive patients are offered transplantation from HIV-negative living donors as well as from HIV-negative and positive deceased donors at Groote Schuur Hospital.

“All patients with HIV are counselled to become part of the ongoing HIV-positive to positive transplant study or to remain on the HIV-negative waiting list (which is much longer) or to come forward with a living donor who is HIV-negative,” he said.

The waiting list for HIV-positive patients at Groote Schuur Hospital is short because of the HIV-positive to positive programme that has grown dramatically over the past few years, said Van der Heever.

This year six transplants were performed with nine patients on the HIV-positive waiting list at Groote Schuur Hospital.

The national Health Department did not respond to multiple requests for comment.