The other trailblazing HIV miracle that went undetected
This unsung SA surgeon has, through her persistence and courage, saved the lives of countless HIV transplant patients
The world’s eyes were fixed this month on a team of Johannesburg doctors who announced a medical breakthrough – a successful liver transplant from an HIV-positive donor to a critically-ill HIV-negative recipient. But in an operating theatre 1,500km away and 10 years earlier, another groundbreaking transplant took place that has largely flown under the radar.
On September 23 2008, Professor Elmi Muller transplanted HIV-infected kidneys from a single donor into two HIV-positive men at Cape Town’s Groote Schuur Hospital, the site where the world’s first heart transplant took place in 1967.
Muller’s operation was not only trailblazing. It was also courageous because it took place at the height of the Aids-denialism era, when HIV-positive patients with renal failure had no option but to die.
In a country with about 3,000 people waiting for transplants, HIV-positive people were at the bottom of the queue. In fact, they weren’t even in the queue at all. These patients were not eligible for dialysis in the state sector and didn’t make it onto the transplant lists.
“For the clinician, there were a few options available: let the HIV-positive people with end-stage renal failure (ESRF) die; plead for dialysis for these people; or use HIV-negative donors to transplant the patients – as had been done in the United States,” Muller said this week.
Because of the country’s limited health resources, letting patients die had become the default position chosen by physicians, surgeons and society, she said.
“I am not aware of a single enquiry by an ethics committee nationally about whether it was ethically acceptable to let these patients die. As one nephrologist put it, they had to limit dialysis for patients, and HIV was one of the clear-cut ways to do this. Because of the stigma the disease carries, the fact that very few patients in SA are prepared to make their status known and the reality that HIV-positive patients are generally poor and have limited access to resources like the media, this situation was never questioned and never debated.”
Muller was not prepared to let her patients die so she came up with a fourth option – find a new source of donors: HIV-positive donors.
“More and more of our referred brain-dead trauma patients were found to be HIV-positive, so it made sense to try to think about a way to incorporate them into the pool of donors,” she said.
In 2008, HIV-positive patients were barred from donating organs, but Muller knew that using organs that otherwise would have been discarded was the only opportunity for survival so she launched the Positive-to-Positive programme.
“We had all these patients with HIV who we couldn’t give dialysis and who needed transplants, and we were refusing organs from patients because they had HIV? It just didn’t make sense,” said Muller.
She figured HIV-positive donors donating to HIV-positive patients was a “simple” way of solving the problem.
One of the barriers she had to overcome was resistance from her own institution.
“When I started the programme, I went through a very difficult time. I had to justify my decisions and was heavily criticised for transplanting HIV-positive recipients with HIV-positive organs. There was resistance because people thought these patients would have poor clinical outcomes.”
Muller wanted to show that using HIV-positive organs was a safe and valuable treatment option for people living with HIV.
Many questions were raised, but the most crucial was whether the recipient would become infected with the donor’s strain of HIV.
“I initially did regular viral loads on these patients, worried that a new strain would flare up or that a new recombinant strain would form and that this new HIV strain would have resistance to antiretroviral drugs. However, this did not happen. Nobody had clinical effects of the new viral strains,” Muller said.
Her surgical intervention extended the lives of the two men who received the kidneys on September 23 2008. The one died five years after the transplant – his graft was functioning, but he had lung cancer. Ten years on, the second man is alive and well with a functioning kidney. Two more HIV-positive patients had kidney transplants that year and both are still doing well.
Since Muller started the Positive-to-Positive programme, 51 people have received transplants – that’s five out of about 60-70 kidney transplants performed at Groote Schuur every year.
Muller monitors her transplant patients and most are thriving.
“These transplants would not have happened without using HIV-positive donors. We have given at least 40 patients a new lease on life,” she said.
In 2015, the Transplant Journal called Muller’s work “a game changer”. She wrote a thesis on her research, and in his recommendation that the surgeon be awarded a doctorate – making her “Professor Dr Dr Muller” – the examiner took the unusual step of attaching a photograph to his evaluation report: a picture of then US president Barack Obama signing the HIV Organ Policy Equity (HOPE) Act in 2014, ending the federal ban on the procurement of organs from donors infected with HIV. He attached the photo because it demonstrated the global impact of Muller’s work.
The Transplant Journal said it was because of Muller’s perseverance in pushing this lifesaving innovative approach forward in the face of initial resistance that had an impact on US laws.
It added this was a “welcome change to the usual unidirectional ‘game’ of exporting innovation from the developed to the developing world”.
Professor Dorry Segev, an epidemiologist and transplant surgeon at Johns Hopkins Medical Institute in Baltimore, told the Nature Medicine journal that if Muller hadn’t had success there was no way the HOPE Act would have been passed.
“She’s opened the door and given us a glimpse, but it’s for us to walk through,” he said. Back in South Africa, Muller’s initiative has increased the donor pool, improved awareness of transplantation and shifted attitudes towards HIV-positive people to become both donors and recipients.
Fulbright Scholar Komal Kumar came to SA to do research in the HIV transplant field last year.
“Prior to my arrival, what I knew of Dr Muller’s pioneering procedure was limited to the scarce reports by the media and a handful of publications in the literature, but she has laid the foundation for scientific discovery, impacted legislation beyond the borders of her country, and has made a significant contribution towards health equity,” said Kumar.
Kumar has started making a documentary about the Positive-to-Positive programme to tell more people about this landmark procedure, highlight women in surgery, promote organ donation and honour Muller.
For Muller, though, it’s not about recognition.
“One of my very early HIV-positive transplanted patients came to the clinic one day with her young son to visit me. She introduced him to me. He was the same age as my youngest son and I realised what an impact his mother’s transplant had. Even if I could just do this for one patient, this was enough for me.”