Op-Ed: Tobeka Daki died fighting Roche. Her death will not be in vain.

Tobeka Daki was a single mother from Mdantsane township in South Africa who was diagnosed with HER2+ breast cancer in 2013. Following her diagnosis, Tobeka was informed that she needed trastuzumab, in addition to a mastectomy and chemotherapy, to improve her chances of survival. A chance of survival that Tobeka was denied – not for medical reasons, but because she could not afford to buy it. Her cancer spread to her spine and on November 14, 2016 she died in her home.

Today, it is impossible to definitively say whether Tobeka’s life would have been saved if she had been able to access trastuzumab treatment. However, there is clear evidence that trastuzumab would significantly have improved Tobeka’s chances of survival.

Multiple monopoly patents, combined with the slow market entry and registration of biosimilar products globally, have allowed Roche to charge exorbitant prices for the life-saving treatment for far too long.

In South Africa, a 12-month course of trastuzumab costs approximately R516,700 ($38,000) – or around five times the country’s average household income. Given its unaffordability, trastuzumab is not available in South Africa’s public health sector where more than 80% of the country’s population seek care. Additionally, high co-payments required by medical insurers to access the treatment are simply unaffordable for many who use the private sector.

Yet, despite very limited access, Roche is able to generate significant income from the sale of trastuzumab in South Africa. In 2015, trastuzumab was the second highest driver of expenditure on a medicine in South Africa’s private sector. During the same year, Roche earned more than $8.9-billion in profits globally.

The excessive amounts of income and profits generated by trastuzumab reflect the excessive price mark-ups commonly applied by pharmaceutical companies in order to maximise their profits – at the expense of patients’ access to the medicines they need.

Recently UK-based economists estimated that a full 12-month course of trastuzumab can be produced and sold for as little as R3,300 – a mere fraction of prices charged by Roche. This low figure includes a 50% mark-up on the cost of production for profit and is similar to estimates for producing trastuzumab provided confidentially from a competitor company in 2013.

Recognising the injustice faced by herself and others who are unable to access trastuzumab while Roche reaps massive profits, Tobeka threw herself into advocating for equitable medicine access for all during 2016. In February 2016, she was featured in a short video in which she noted: “If I can get [trastuzumab] treatment, it will give me a chance to see my two sons and my grandson growing.” Even as the likelihood of her being able to access trastuzumab diminished, Tobeka’s determination to ensure other women could access the medicine only grew stronger.

Tobeka went on to lead several demonstrations, calling on Roche to drop the price of trastuzumab, and gave testimony regarding her inability to access trastuzumab treatment in front of the United Nations’ High Level Panel on Access to Medicines.

Finally, less than two months before her death, Tobeka led a march calling on the South African government to end delays in reforming South Africa’s patent laws to improve medicine access.

On World Cancer Day 2017, the Fix the Patent Laws coalition renamed its campaign the Tobeka Daki Campaign for Access to Trastuzumab – to remember Tobeka, to recognise her inspirational leadership and to pledge ourselves to continue her struggle for access to affordable medicines.

Starting in February, activists across the world will highlight the excessive price of trastuzumab and Roche’s unconscionable profits as women continue to die as a direct result of their prices. We will demand access for every woman who needs it.

The campaign will call on Roche to drop the price of trastuzumab so that all women living with HER2+ breast cancer who need it can access it; to immediately cease all litigation against biosimilar versions of trastuzumab; and to stop abusive patenting practices that needlessly extend their patent monopoly on trastuzumab. DM

Photo: Tobeka Daki (TAC)

Mavasa is the National Chairperson on the Treatment Action Campaign (TAC). Tomlinson is a Researcher with the Cancer Alliance in South Africa.

To follow the campaign in South Africa, visit @FixPatentLaw or www.fixthepatentlaws.org and follow hashtags #ForTobeka and #RocheGreedKills