Patients break law to get TB drug

FILE - In this Friday, Nov. 9, 2007 file photo, a nurse attends to patients at a tuberculosis clinic in Gugulethu, Cape Town, South Africa. The spread of a virtually untreatable form of tuberculosis in South Africa is being fueled by the release of infected patients into the general community, according to a new study published online Friday, Jan. 17, 2014 in the journal, Lancet. Scientists tracked 107 patients with extensively drug-resistant TB, also known as XDR-TB in three South African provinces between 2008 and 2012. (AP Photo/Karin Schermbrucker, File)

FILE - In this Friday, Nov. 9, 2007 file photo, a nurse attends to patients at a tuberculosis clinic in Gugulethu, Cape Town, South Africa. The spread of a virtually untreatable form of tuberculosis in South Africa is being fueled by the release of infected patients into the general community, according to a new study published online Friday, Jan. 17, 2014 in the journal, Lancet. Scientists tracked 107 patients with extensively drug-resistant TB, also known as XDR-TB in three South African provinces between 2008 and 2012. (AP Photo/Karin Schermbrucker, File)

Published Oct 2, 2014

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Cape Town - The high cost of drugs for extensively drug-resistant tuberculosis (XDR-TB) has led some medical aid schemes to be selective in providing coverage and left patients with a tough choice: break the law or die.

During the dark days of Aids denialism, activists smuggled antiretrovirals (ARVs) into the country in suitcases and airfreight cargo.

Now some XDR-TB patients are looking at ways outside the law as Linezolid continues to cost more than R700 for a daily pill. While a generic equivalent costs about R80 a pill, drug regulatory body the Medicines Control Council (MCC) has failed to register it for use in the country, according to Médecins sans Frontières (MSF).

By the time Andaleeb Rinquest-January was diagnosed with XDR-TB in late 2010, she had wasted away to 29kg. She had also lost her medical aid cover. In 2011, she spent seven months at the UCT Private Academic Hospital. Her family has about R300 000 in unpaid hospital bills.

Rinquest-January was readmitted to the hospital in 2013, by which time she had joined Discovery Health Medical Scheme, which refused to pay for more than one month of Linezolid. The scheme suggested she seek public sector care. Rinquest-January recently lodged a complaint with Discovery with the help of public interest law organisation Section27

.

“It’s a serious problem for medical schemes to push people with the disease on to the public sector,” said Section27 legal researcher John Stephens.

Discovery chief executive Dr Jonny Broomberg said: “We were not provided with all the clinical data required to justify approval of extended treatment with Linezolid.”

According to Broomberg, additional information had led its medical review team to fund Rinquest-January’s treatment.

Health-e News asked Discovery Health, the Government Employees Medical Scheme, Fedhealth and Momentum what their policies were.

All schemes noted that while they had previously paid for some patients to receive the drug, the decision was taken on a case-by-case basis.

While Linezolid is not part of South Africa’s initial standard drug-resistant TB treatment regimen, guidelines say that the drug should be considered for patients with few other options if cost permits.

Most of the XDR-TB patients in a government-run programme offering patients access to a new XDR-TB drug, Bedaquiline, are also receiving Linezolid.

One XDR-TB patient reported trying to order a generic Linezolid product through online pharmacies. This shipment was stopped at customs.

Erica Lessem works with the US-based health advocacy organisation the Treatment Action Group. She says the high cost of the Pfizer drug is pushing patients internationally to take risks.

“There are some areas in which (these ways) might not be legal. It’s crazy.”

“Both Linezolid patents (in South Africa) have lapsed,” MSF Advocacy Campaign Officer Julia Hill said. “In the case of Linezolid, the blocking factor to more affordable access is the registration of a generic by the MCC.”

Health-e News Service

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