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Acting on BRCA

Ovarian Cancer Action Voices 2017

At Ovarian Cancer Action, we know that taking action on BRCA saves lives. We’ve been leading the fight since 2013, and in 2015 we launched our BRCA Cancer Prevention Strategy.

In 2017,  our latest policy paper, Acting on BRCA: Breaking down barriers to save lives, revealed that the NHS is still missing the opportunity to use BRCA testing as an effective cancer prevention strategy, and women are dying as a result. Our report highlights seven areas where the Government must take action, from making sure those who are eligible are offered testing, to providing every patient with good quality information to help them make life-changing decisions. We’ve made recommendations in each of these areas to improve services and fulfil BRCA testing’s potential as a cancer prevention tool. 

What do we want?

  • We want those with a BRCA1/2 gene mutation to have a clear and easy to use care pathway. This should include not only testing, but also relevant advice and guidance.
  • We want the NHS to find a mechanism to reach out to individuals who may be unaware of their BRCA status, so we can maximise cancer prevention opportunities.
  • We want BRCA affected families to have the best possible information, advice and guidance on cancer risk reduction and prevention so that they can be empowered to make the best decision for themselves.
  • We want the NHS to demonstrate its commitment to delivering on its ambitions for cancer prevention. This means active monitoring of the take up of BRCA1/2 testing across the country via an audit of Genetics Centres, and quickly identifying and remedying any barriers to BRCA1/2 testing.

How do we get it?

  • We will develop and provide patient guide materials to help family members’ access existing genetic services and cancer prevention options. Visit our BRCA hub.
  • We will lobby the government, and the devolved assemblies and parliaments, to deliver a life-saving cancer prevention strategy across the UK.

  • We will monitor international advice and protocols through our extensive global connections with supporting international forums.

  • We will monitor the roll out of the current NHS England commissioning policy to ensure consistent and high quality services are available to all BRCA families in England.

  • We will help women understand their risk through our online BRCA risk tool.

What have we done?

In 2013 Ovarian Cancer Action began campaigning for all women with non-mucinous epithelial ovarian cancer to be offered testing for BRCA1/2 gene mutations at the point of diagnosis, to ensure the best possible outcome for patients and their families.

The clinical guidelines changed in July 2015 and we are thrilled to have played a part in making this happen. However, although ovarian cancer patients are now immediately eligible for BRCA testing, this is not always happening and the picture across the UK is patchy.

What are we doing now?

We will continue to campaign on this matter and provide those affected by BRCA1/2 gene mutations with accurate information on their options and rights. We want BRCA testing to be easily and equally accessible for ovarian cancer patients across the country.

Are you an ovarian cancer patient who has had trouble accessing BRCA testing? We want hear your story! Please email brca@ovarian.org.uk

Visit our BRCA hub for advice, support and information on BRCA gene mutations and inherited risk.