[Ip-health] In loving memory of Tobeka Daki

Catherine Tomlinson crtomlinson at gmail.com
Wed Nov 16 05:39:43 PST 2016

It is with great sadness that the Fix the Patent Laws (FTPL) coalition
shares news of Tobeka Daki’s death. Tobeka, was a single mother from
Mdantsane in the Eastern Cape, a daughter, a friend, a woman living with
HER2 positive breast cancer, a support group member and an advocate for
equal and affordable access to medicines for all.

Tobeka was diagnosed with HER2 positive breast cancer in 2013. At this
time, Tobeka was told by her oncologist that she needed trastuzumab – in
addition to chemotherapy – which would increase her chances of beating
cancer and living a long and healthy life. Trastuzumab is recommended by
the World Health Organisation as an essential treatment for HER2 positive
breast cancer – a more aggressive type of cancer, with higher recurrence
and mortality rates than HER2 negative cancer.

Despite being a good candidate for trastuzumab, and being a member of a
medical scheme, Tobeka was unable to access this treatment due to its
extremely high cost and inaccessibility in most public sector facilities.
The cancer spread to her spine and, on 14 November 2016, Tobeka died in her

As an advocate for medicine access, Tobeka spoke out about her inability to
access trastuzumab in the FTPL campaign for affordable and equitable access
to trastuzumab. On World Cancer Day (4 February) 2016, Tobeka was featured
in a short video <https://www.youtube.com/watch?v=Vl5AJa7_pDY> that
highlighted the challenges facing women in South Africa seeking treatment
for HER2 positive breast cancer. In March of 2016, Tobeka told her story
<http://bhekisisa.org/article/2016-03-18-un-access-meds-follow-up>in front
of the United Nations High Level Panel on Access to Medicines, which
pledged to remedy incoherence between patent rights and health rights.
Later that month Tobeka led a picket
front of Roche’s offices in Pretoria to protest the high price charged by
Roche, which prevented her from accessing the potentially life-saving

In July, Tobeka shared her story
<http://tac.org.za/news/roche-stop-booby-trapping-access-medicines> at the
International AIDS Conference in Durban during a disruption of Roche’s
conference display booth. And, as recently as September, Tobeka led a picket
of the Department of Trade and Industry’s Pretoria offices 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.

Roche is currently the only company marketing trastuzumab in South Africa.
Patents granted in South Africa could extend Roche’s monopoly until 2033 –
long after it has ended in other parts of the world.  In the private sector
a 440 mg vial of Herceptin costs ZAR 25,835 – or approximately ZAR 516,700
per 12-month course. Trastuzumab is unavailable to the vast majority of
women seeking care in the public health care sector – except in rare cases
where motivated oncologists have successfully advocated for facility level
budgets to be allocated for trastuzumab.

The FTPL coalition has repeatedly called on Roche to lower the cost of
trastuzumab to ensure it is accessible to all people that could benefit
from the treatment, and to publicly disclose the price it has offered to
the Department of Health. To date, they have failed to do so.

Today, the Cancer Alliance (20 cancer organisations that are members of
FTPL) made a submission
the Department of Health motivating for the provision of trastuzumab in the
public sector, and calling on the Department of Health to explore and
utilize all available tools to secure an affordable price for its

We further reiterate our call to the Department of Trade and Industry to
end delays and act with extreme urgency in reforming South Africa’s patent
laws to improve medicine access in the country.

FTPL has set up a fundraiser
raise money to support Tobeka’s family with funeral costs, and in caring
for the two sons that she left behind. All money donated will go directly
to Tobeka’s family. See fundraiser at:

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