South African Aids patients who took part in drug trials have been dumped by the company that used them. Ruaridh Nicoll and Mungo Soggot report
MORE than 150 Aids patients in South Africa were encouraged into a drug-testing programme run by the Swiss pharmaceuticals giant Roche after Johannesburg Aids experts falsely claimed they would be given free drugs for life.
The 80-week programme, run in collaboration with Wits University and Johannesburg Hospital, dramatically halted the deterioration in the patients’ conditions. But the patients discovered the treatment was to end – in February this year – as Roche prepared to register the drug for market.
The price of the drug – about R1 800 a month – is way beyond the reach of most South African Aids and HIV patients, as well as state health resources.
Roche said this week its contract with the 160 South Africans, part of a global group of 3 500 human “guinea pigs”, had stipulated the treatment would end when the drug, Saquinavir, became available on the open market – an agreement it employs worldwide.
But the deputy chairman of Wits’s ethics committee, John Kalk, said there had been a “verbal agreement” with Roche that the patients’ treatment would continue until it was no longer useful.
Roche dismissed such talk. “I don’t accept that there was such an agreement,” says Roche South African representative Dr Mike Brown.
“What is important is what is in the contract. The patients want an indefinite supply of free drugs. We are not of a mind to do it.”
The company has now agreed to continue treating the patients for free until the end of the year, and was discussing the issue with the university this week.
But, Brown added, “Our responsibility is to discover new drugs and not to sponsor health care … in most other countries the state pays for Aids drugs.”
The Roche programme has raised fresh ethical concerns about the guinea-pig trials undertaken by multinational pharmaceutical groups in developing countries. Many local doctors say patients are often unable to understand the terms of the contracts they are signing, but are desperate to try the treatment.
And, according to United States Aids information group Project Inform, the treatment of Aids patients could be adversely affected by taking them off such a drug regime. Patients can easily develop a resistance to drugs like Saquinavir if they keep changing their dosages, making treatment with the drugs less effective at a later stage.
“Companies from abroad come to this country to circumvent ethics,” Wits ethics committee head Professor Peter Cleaton-Jones told the Mail & Guardian’s sister newspaper, The Observer, in London.
Vincent Hlongwane, representative for Health Minister Nkosazana Zuma, dubbed as “grossly inhuman” the practice of using and then dumping guinea-pig patients.
Other groups were more philosophical. Mark Decker, a representative of Friends for Life, which counsels some of the patients, said that “somewhere along the line someone erred and did not follow the correct procedure.
“The blame is being put on a verbal agreement. Patients who were promised free drugs are now losing out.”
He said patients should read the small print before signing up, and ensure every agreement is put in writing.
Dr David Spencer, the head of the Johannesburg Hospital’s infectious diseases clinic, which ran the drug trial, could not be reached for comment.