The face behind the Access to trastuzumab campaign
Tobeka Daki (49), the face behind the Access to trastuzumab (Herceptin) campaign, affiliated to the Fix The Patent Laws (FTPL) campaign, lost her battle to metastatic breast cancer on 14 November 2016. In honour of this brave mother of two, who dared to stand up for the injustice of inequitable access to life-saving cancer treatment, we reflect on her courageous life and actions.
13 November 2013 – The single mother of two sons, who lived in Mdantsane, Eastern Cape, was diagnosed with HER2+ breast cancer. She had a mastectomy on 20 November 2013 with follow-up chemotherapy for six months.
March 2014 – Tobeka was informed she needed trastuzumab, however, due to the high cost of the drug, she was not able to access treatment.
December 2014 – The 47-year-old resigned from her job due to the side effects of treatment, and thus lost her medical aid cover.
January 2015 – After losing her medical aid, Tobeka accessed the public sector at the Frere Hospital in East London. She was never informed of the possibility of treatment with trastuzumab. This life-saving treatment is not offered in the majority of government hospitals.
October 2015 – Tobeka was trained in advocacy and lobbying by Advocates for Breast Cancer, to enable breast cancer survivors to become directly involved in the issues of distributive justice (see blogforbreastcancer.wordpress.com).
November 2015 – She was diagnosed with metastatic breast cancer (cancer that has spread from the breast to other organs in the body).
4 February 2016 – Tobeka was featured in a World Cancer Day video, highlighting the challenges South African women are facing when seeking treatment for HER2+ breast cancer. Simultaneously, Advocates for Breast Cancer sent a letter of appeal to the Minister of Health to make this treatment available to the public sector.
March 2016 – Tobeka gave testimony to the United Nations High Level Panel on Access to Medicines. The focus of this panel was to remedy the incoherence between patent rights and health rights.
Later in March 2016 – Tobeka led a picket in front of Roche’s offices, in Sandton, to protest the high price, charged by Roche, for trastuzumab. This high cost makes this essential life-saving treatment for HER2+ patients unaffordable to the public sector.
July 2016 – The mother of two shared her story at the International Aids Conference in Durban.
September 2016 – Tobeka led the picket to the Department of Trade and Industry’s offices, in Pretoria, with the FTPL campaign comrades (www.fixthepatentlaws.org), to call on the South African government to end delays in undertaking reform of South Africa’s patent laws to improve medicine affordability and access. FTPL, concurrently, released a report highlighting how South Africa’s patent laws impede on medicine access, in which Tobeka’s story was featured.
November 2016 – The Cancer Alliance provided the Minister of Health with a submission to motivate for provision trastuzumab in the public sector, in response to the Department of Health’s concerns regarding cost effectiveness of the treatment.
14 November 2016 – Our brave warrior died peacefully at her home in Mdantsane. This is three years and one day after being diagnosed with HER2+ breast cancer.
4 February 2017 – World Cancer Day. There is still no hope for women diagnosed with HER2+ breast cancer in the public sector to have access to this treatment. The Department of Health is still in the process of determining the cost effectiveness of this treatment, whilst Roche has made this drug available at a substantially reduced price.
FTPL officially renamed the Access to trastuzumab campaign as the Tobeka Daki Access Campaign. We trust that Tobeka’s untimely death will not be in vain and that in 2017 HER2+ breast cancer patients will have equitable access to trastuzumab. This life-saving drug is already listed by the World Health Organisation (WHO) as essential for treatment.
Information supplied by FTPL Campaign and Cancer Alliance.
*To read previous articles on the FTLP campaign, visit www.buddiesforlife.co.za