'People have died because of this' - cancer patient on price fixing allegations

Cape Town – Breast cancer patients says the cost of some medication is so steep many with the illness simply cannot afford to treat it and this leaves them without the drugs and facing death sentences.

Lilian Dube, a multimedia producer for MultiChoice in Johannesburg, was found to be HER2 positive in 2015.

HER2 is a specific type of breast cancer.

"But I thank God I am still employed and still have a home. It hurts me so much to think that there are people who don't even work because it means the drug is unaffordable and hence their days are numbered,” Dube told News24 on Wednesday.

Patients with HER2 have to cough up roughly R500 000 for drug treatment alone, while patients who rely on public healthcare may never be diagnosed. 

Price fixing probe

The Competition Commission on Tuesday revealed it will be investigating three of the largest pharmaceutical companies in South Africa for allegedly fixing the price of certain cancer drugs. 

HER2 is a specific gene responsible for breast growth. In cancerous scenarios, the gene doesn't work correctly and makes too many copies of itself which causes breast cells to grow and divide in an uncontrolled manner. 

It is estimated that 25% of cancer patients are HER2+.

HER2+ patients, speaking to News24 on Wednesday, said due to the alleged price fixing of the Herceptin drug, specifically used in the treatment of HER2, it was effectively unaffordable in the private sector and basically unavailable in the public sector. 

Herceptin is also commercially known as Trastuzumab.

Herceptin drug
Protestors protesting against drug price fixing in front of Roche offices in Johannesburg on February 7. (Supplied)                      

'People have died'

Dube's medical aid covered only three of the 19 Herceptin treatments she required. 

"Can you imagine, to put money first before life – people have died because of this [price fixing]. Can you believe that for this type of cancer there’s a cure for, but it can’t be used because these companies keep it unaffordable," Dube said. 

Claudette Moore, a public hospital patient who only found out she was HER2+ because she could afford a private blood test, said she feels like her days are numbered because she is unable to afford the Herceptin drug.

"It's heart breaking, it feels like you are worth nothing. It feels like there are things in this country worth more than you are – why does the state not care about me? What makes other people better?" she asked.

Moore, now in remission, was diagnosed with HER2 in 2015.

'Red devil' treatment

As a public health patient, Charlotte Maxeke Johannesburg Academic Hospital, formerly known as the Johannesburg General Hospital, refused to supply her with Herceptin and she was treated with a heavy mix of chemo called the “red devil” because of its colouring. 

"Who's to say that if I had access to Herceptin that my cancer could’ve been gone, if I was treated with the correct thing? In my case the cancer can come back any time. It is always in the back of my mind, there’s a voice saying: 'listen here, you’re living on borrowed time'," she said. 

Moore and Dube are members of the Cancer Alliance, which advocates for a change in patent laws to make life-saving drugs such as Herceptin affordable to patients. 

The association blames companies such as Roche Holding AG, which has a patent on Herceptin production in South Africa until 2020, for pushing up drug prices in the pursuit of corporate profit. 

Roche Holdings AG is one of the three companies under investigation by the Competition Commission. 

Cancer Alliance coordinator Salomé Meyer told News24 that currently Kimberley Hospital is the only hospital in South Africa dispensing the Herceptin drug.

Herceptin drug
Placard for deceased Tobeka Daki who died in 2016 without receiving Herceptin drug for her HER2+ cancer. (Supplied)

'No one cares'

"My question is, when has it not been cost effective to save a person's life? To save a person’s life is regarded as important enough when it's HIV, however if the same person gets HER2+ no one cares," she said.

Meyer, who started with cancer advocacy after her best friend passed away from breast cancer more than 20 years ago, said public hospitals do not test for HER2+ as they are unable to administer Herceptin. 

"It's not that they are not lying, they are just not disclosing the truth. The patient just doesn’t know any better, that's the reality of where we are." 

Meanwhile, the head of Charlotte Maxeke Hospital's therapy committee, professor Guy Richards, confirmed that tests for HER2+ were not conducted because Herceptin is unavailable. 

"No, the tests weren’t completed because the drug was unavailable," he said. 

Richards, who is also the academic head for critical care at the University of Witwatersrand, however said that Herceptin is not primarily used as a HER2+ cure.  

"It is not going to save people, it [only] results in a prolongation in a small group of patients," Richards told News24. 

Drug trial and 'no notification' of probe

He said the state has decided to roll out Herceptin to a small number of patients in trial centres starting in July. 

In written answers, Roche Holdings AG said they have received no formal notification from the Competition Commission about its investigation. 

"In case we receive a formal notification, we will be cooperating fully with the authorities, will provide all required information and will respond to the allegations," spokesperson Aadila Fakier said. 

Fakier did not respond to questions specifically asking whether price fixing occurred for the Herceptin drug. 

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