Ovarian Cancer (Gene Testing)

Jane Ellison Excerpts

Tuesday 4th November 2014 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

I thank the hon. Member for South Down (Ms Ritchie) for bringing this important issue to the House today. She has a long-standing interest in health issues and she has made the case very well for why we need to look closely at this important disease. I will come back to her after the debate on any point that I am not able to respond to now, particularly the technical aspects. I want to give the House a bit of the picture on what else is happening on ovarian cancer, as well as addressing the specific issues that she raised.

As the hon. Lady said, ovarian cancer is the fifth most common cancer for women in the UK. The current five-year survival rate is 44%, but we know that if we get the critical early-stage diagnosis, up to 90% of women survive for at least five years. We know that we could save 500 additional lives each year if we matched the best European survival rates. The debate comes at a poignant time for me, because I lost a very dear friend to ovarian cancer less than three weeks ago. I am well aware of the pressure that the disease brings to bear on the families of those affected. We are investing an additional £750 million over four years in England to improve early diagnosis, and I will discuss the details of that and of treatment later.

The hon. Lady’s speech focused on testing and the BRCA1 and BRCA2 genes. As she rightly said, a family history of cancer is one of the most important risk factors for ovarian cancer, with about one in 10 ovarian cancers being caused by an inherited faulty gene such as the two to which she referred. Incidentally, the genes also increase the risk of breast and prostate cancer. We know that women with a mother or sister diagnosed with ovarian cancer have three times the risk of ovarian cancer of women without such a family history.

NICE’s most recent guidelines recommend offering genetic testing to people with a 10% risk of carrying a BRCA mutation, which is lower than the 20% risk previously recommended. I remind hon. Members that NICE clinical guidelines represent best practice and that we expect NHS organisations in England to take them fully into account when designing services to meet the needs of the population. As a result of their complexity and the different states of readiness for implementation in the NHS, clinical guidelines are not subject to the same statutory funding regulation as technology appraisals. Clinical guidelines therefore have a slightly different status, but it is none the less important that NICE has revised them. NHS England is considering the new recommendation in developing and publishing a single national clinical commissioning policy to confirm the routinely funded NHS threshold for testing.

Like the hon. Lady, I thank Ovarian Cancer Action for all its work in this area. The recently released report on BRCA testing raises important issues, some of which were aired in the hon. Lady’s speech and in interventions. NHS England has said that moving to routine testing at a 10% risk would require a significant capacity and funding investment in genetic testing, diagnostics, counselling and treatment. NHS England is currently considering the potential for funding a revised 10% testing threshold in 2015-16 as part of its annual funding prioritisation process. I will draw NHS England’s attention to the strength of feeling in this debate and to the interesting points that my right hon. Friend the Member for Sutton and Cheam (Paul Burstow) and the hon. Member for South Down made about cost-effectiveness. I will also stress that Parliament continues to have considerable interest in the subject.

The hon. Lady touched on groundbreaking techniques, which provides me with an opportunity to refer to the 100,000 genomes project. We can see the potential of genomics to understanding cancers and rare illnesses and finding new treatments. In 2012, we launched the 100,000 genomes project, through which 100,000 whole genomes from NHS patients will be sequenced by 2017. The project will focus on patients with a rare disease and their families, as well as patients with cancer. Ovarian cancer is in the programme’s scope, and it will hopefully enable us to continue our record of groundbreaking cancer research here in the UK.

I will update hon. Members on the two major screening trials for ovarian cancer taking place in the UK. The first is looking at two possible techniques: trans-vaginal ultrasound and a blood test for cancer antigen CA125. Both of them are being tested as part of the UK collaborative trial of ovarian cancer screening. The study is being funded by the Medical Research Council and Cancer Research UK, with the Government funding the NHS costs of the study. The first phase of results was promising for both techniques, and the final results are due in January 2015. The UK National Screening Committee, which advises the Governments of England, Scotland, Wales and Northern Ireland on screening matters, is preparing to assess the results of the trial against its internationally recognised criteria for a screening programme and to make a recommendation on that basis, which could be a significant move forward. A second study, the United Kingdom familial ovarian cancer screening study, which began in 2005, is also looking to develop an optimised screening procedure for ovarian cancer in high-risk women, such as those to whom the hon. Lady referred.

Returning to early diagnosis, there is cause for encouragement, but we must continue to consider early diagnosis at every possible moment. The hon. Lady is right to draw attention to the impact of early diagnosis on survival rates. The Government have committed £450 million to achieving earlier diagnosis and improving survival. The funding supports improved direct GP access to four key tests, including non-obstetric ultrasound, to help with speedier diagnosis of ovarian cancer. Those tests are being used; in June 2014, GPs requested more than a quarter of all tests that may have been used to diagnose cancer under the direct access arrangements. The test with the highest proportion of GP referral was ultrasounds that may have been used to diagnose ovarian cancer, 46% of which were requested by GPs.

I also want to update the House on the “Be Clear on Cancer” preventive work in England. We want to improve outcomes for women, which is what Public Health England is working towards. With the Department and NHS England, it ran a regional “Be Clear on Cancer” ovarian pilot campaign early this year to raise awareness of the symptoms of ovarian cancer. Like other cancers with poor survival rates, many of the early symptoms can be similar to those of benign conditions, making early diagnosis difficult. The next step is to assess thoroughly the data from the regional pilot, which will help us make informed decisions about which cancer and symptom-awareness campaigns to take forward in 2015-16.

On research, the National Institute for Health Research’s clinical research network is currently recruiting patients to more than 30 ovarian cancer clinical trials and studies. In partnership with Cancer Research UK, the NIHR is also funding 14 experimental cancer medicine centres across England, six of which have a focus on ovarian cancer. A good amount of research is ongoing.

In addition to giving some sense of where NHS England is on BRCA testing, I hope that I am also providing a rounder picture of what else is going on in the field, including screening, diagnostics and awareness campaigns. It is important that the matter gets this level of attention.

[Ms Ritchie]

Has the Minister had any discussions with the NHS in Wales and in Northern Ireland? Like her, I have personal experience from knowing people who have died. Perhaps their situation could have been made easier had they had much earlier diagnosis.

[Jane Ellison]

Although the decision is one for NHS England, the debate has highlighted the fact that interesting work is going on in Scotland. The scale of the challenge is smaller in numerical terms, but I am interested in finding out more about what is going on. I will certainly initiate a conversation to understand what is going on in the four countries of the United Kingdom. I have regular conversations with Health Ministers from other nations for other reasons, as the hon. Lady knows. It may not be possible to raise this specific issue in those conversations, but I will ask for more information to see whether lessons can be learned and to understand the points identified in studies about the cost-effectiveness of early testing, in order to ensure that we have bottomed that out.

I hope that this short debate has served to highlight the issue’s importance. I am always grateful for an opportunity to discuss such important issues and to ensure that the House expresses its interest in making better progress on cancers with the poorest survival rates. I hope I have also updated the hon. Lady and other interested Members on what else is going on to try to improve outcomes for family and friends and to achieve better results in future. I thank for bringing the debate to the House today.