Ovarian Cancer (Gene Testing)

Baroness Ritchie of Downpatrick Excerpts

Tuesday 4th November 2014 Westminster Hall

[Ms Margaret Ritchie (South Down) (SDLP)]

I am pleased to serve under your chairmanship, Mr Caton, and I am grateful to have secured this vital debate on ovarian cancer, and more specifically on the implementation of genetic testing techniques for every woman diagnosed with the illness. Ovarian cancer affects more than 6,500 women in the UK each year, making it the fifth most common cancer among women. In fact, more than 150 women a year are diagnosed with the disease in Northern Ireland alone. It is most common in women—

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On resuming—

[Ms Ritchie]

Again, it is a pleasure to serve under your chairmanship, Mr Caton. I am pleased that the Minister is here to respond on this delicate, critical and vital issue for women.

Ovarian cancer is most common in women who have had the menopause, but it can affect women of any age. Notably, the symptoms can be difficult to diagnose, as they are common to many other less serious ailments. Sadly, that leads to many women not getting the treatment they need quickly enough. It is the most aggressive gynaecological cancer. Only about 40% of women are still alive five years after being diagnosed, according to research in the British Medical Journal.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Lady on securing this debate. As she knows, I do a lot of work in my constituency with the Mandeville cancer unit. When I visit it, I see a lot of younger women who have the disease. Hospital staff tell me that early intervention is one of the ways that it can be resolved, so I fully support the hon. Lady in her bid today.

[Ms Ritchie]

I thank the hon. Gentleman his intervention. I agree that it is all about early diagnosis. Women who are diagnosed in the early stages of ovarian cancer have a 90% chance of surviving the next five years, but if the cancer is found at a later stage the five-year survival rate is reduced to 22%—quite a startling statistic. Clearly, early diagnosis and treatment is vital.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this important issue to the House’s consideration. Some 39% of women carry the harmful BRCA1 gene and up to 70% carry the BRCA2 gene. Does the hon. Lady think that those with a family history of the disease should be tested earlier to ensure they have regular check-ups and screenings? Does she also think that those outside that 39% should have checks?

[Ms Ritchie]

I thank the hon. Gentleman for his intervention. I agree that early diagnosis of ovarian cancer is the key for women.

UK survival rates for ovarian cancer are among the lowest in western Europe, with one woman dying every two hours from the disease. Sadly, according to the Department of Health in Northern Ireland, survival rates for the cancer have not improved significantly since the early 1990s. Dr Miriam McCarthy of the Public Health Agency in Northern Ireland pointed out at a recent hearing in Stormont that the northern European and Scandinavian countries have five-year survival rates above 40%, so we could clearly do more to combat the cancer.

Anybody who has personal or familial experience of this dreadful illness knows the devastating impact it has. In Northern Ireland, a lady called Una Crudden courageously documented her fight with the disease and inspired many others to do the same. I know of a young lady, a teacher in my constituency called Oonagh Carson, who died last year shortly after diagnosis, which took her a long time to get.

[Paul Burstow (Sutton and Cheam) (LD)]

I congratulate the hon. Lady on securing this debate. My aunt died of ovarian cancer some years ago.

One of the areas that I am sure the hon. Lady wants to highlight is the role of genetic testing for ovarian cancer and the BRCA gene. Is she aware of the work that is being led by the Institute of Cancer Research in conjunction with the Royal Marsden on mainstreaming genetic testing in this area? That programme has already produced a free-to-access pathway that has already enabled 200 women to be tested and could be rolled out to other hospitals. It has been shown not to cost any more, but it can save many lives.

[Ms Ritchie]

I thank the right hon. Gentleman for his useful intervention, which highlights the need for genetic testing and the good pilot work that is being done at the Royal Marsden. It is a pity that that work cannot be rolled out in England, Northern Ireland and Wales. We must not forget that such work has already been executed in Scotland.

By better informing the public and GPs and implementing modern genetic testing techniques we can prevent many more women and their families having to live through the trauma of ovarian cancer. I want to focus on genetic testing techniques that have become available and will have a key role in the battle against this dreadful disease. Genetic techniques have rapidly moved out of the realms of science fiction and are having a significant impact on the way we approach and treat illnesses. Without overstating scientific advances and promising miracle cures, we have a responsibility to utilise those groundbreaking new techniques in everyday medicine. As we learn more about the genetic basis for diseases and certain cancers, this becomes not only a medical issue but an issue for society as whole.

There is an onus to manage and develop new information in a responsible, morally sound way that informs people, rather than distressing or panicking them. The public have been made more aware of those techniques by high-profile figures telling their stories. For example, Angelina Jolie has spoken about the tragic death of her mother from ovarian cancer and her decision to have preventive surgery. Mainstream awareness can only be a good thing, but we must harness it positively to empower women to make informed choices about their treatment. Speaking about her experience of genetic testing and of dealing with the illness, Angelina Jolie said:

“Wherever I go, usually I run into women and we talk about health issues, women’s issues, breast cancer, ovarian cancer. I’ve talked to men about their daughters’ and wives’ health. It makes me feel closer to other people who deal with the same things and have either lost their parents or are considering surgeries or wondering about their children.”

In the same way, women in Northern Ireland and elsewhere in the UK who have or are at risk of the disease are desperate to have access to the information that advanced genetic testing can reveal. The genetic testing normally involves having a sample of blood or tissue taken. The sample will contain cells containing DNA, which can be tested to find out whether someone is carrying a particular mutation and is at risk of developing a particular condition or illness.

Specifically, BRCA1/2 gene testing, which was referred to by the hon. Member for Strangford (Jim Shannon), has emerged as the leading genetic test related to ovarian cancer. We all have these genes, but a mutation on them can increase the risk of developing ovarian cancer from one in 54 to approximately one in two. Evidence shows that one in five women with non-mucinous epithelial ovarian cancer, which accounts for 70% of all cases, carries the BRCA1 or BRCA2 mutation, which dramatically increases their risk of developing the disease. The BRCA gene test at a time of diagnosis offers patients the best guidance for their treatment and should be a matter of priority to ensure that the optimal treatment pathway is selected, whether that is drugs or preventive surgery.

Critically, a BRCA test at a time of diagnosis can change the management of their treatment and save the lives of relatives, who can also be guided toward taking the test. Women in possession of this knowledge are able to make better decisions on their own treatment, as can their close relatives. They can make better informed decisions on surgical and drug treatment options. Indeed, the presence of the mutation points to a form of the disease that responds better to PARP inhibitor drugs, such as the new drug Olaparib, on which the European Commission is considering a recommendation for approval. Dr Sadaf Ghaem-Maghami, senior lecturer and honorary consultant in gynaecological oncology at Hammersmith hospital in London, has stated:

“PARP inhibitors are more effective at killing cancer cells and shrinking tumours in patients with BRCA 1/2 than those without. They are particularly important for BRCA1/2 patients who have a recurrence of ovarian cancer, and for whom there might not be many options.”

In short, I contend that it is clear that we need to implement a system across the UK and Northern Ireland where women diagnosed with ovarian cancer automatically receive a BRCA gene test and have the option for close relatives to take that test as well. I have no doubt that that would save lives and put women in a position where they can make decisions based on all the available scientific evidence. What is the Minister’s position on that?

On cost and commissioning, such techniques have unfortunately not received the attention or funding they deserve from NHS commissioners or the Department of Health in England and Wales or the Department of Health, Social Services and Public Safety in Northern Ireland. Despite qualifying under National Institute for Health and Care Excellence guidelines and despite the introduction of mandatory testing in Scotland, the tests are not uniformly available across the UK. It is also evident that clinicians and practitioners in Northern Ireland and England are unclear who is responsible for commissioning BRCA testing. Can the Minster provide clarification on those arrangements and confirm that testing qualifies under NICE guidelines?

BRCA testing has been highly selective and based largely on family history, which risks missing out on three out of four people with the gene, according to the charity Ovarian Cancer Action, which I commend on its work. It published a report some time ago and has been at the forefront of this campaign. It argues that all women with non-mucinous epithelial ovarian cancer should be considered for the test on diagnosis. It should be clarified and reiterated that the procedure is already in place in Scotland. Trials at the Royal Marsden hospital, which were referred to by the right hon. Member for Sutton and Cheam (Paul Burstow), show that such testing could be extended in a cost-effective manner to England, Wales and Northern Ireland.

[Paul Burstow]

The hon. Lady is absolutely right to emphasise that point. The research evidence shows that productivity is increased by doing the testing as part of an oncology appointment, rather than as something separate. The trials are delivering that in a way that is not costing the NHS more, and it is having huge benefits.

[Ms Ritchie]

I totally agree with the right hon. Gentleman. It is estimated that a BRCA1/2 gene test for someone already diagnosed with ovarian cancer costs the NHS between £600 and £850. Associated counselling can cost between £250 and £500. Together, that can amount to approximately £1,000 a patient. Some 15% to 20% of those tested are likely to receive a result that shows they have the gene mutation. There are likely to be additional costs for resulting tests on close family members, but the early diagnosis and treatment of those individuals will be especially beneficial. The evidence shows that BRCA gene testing is cost-effective in other countries. Modelling conducted in association with NICE guidelines on familial testing suggested that BRCA1/2 gene testing versus no gene testing was particularly cost-effective in women aged 35 to 55.

In conclusion, this disease is one of the most prominent threats to women’s health. It is particularly difficult to diagnose and treat early, and it is obviously devastating and very sad for sufferers and their families, but we are on the cusp of being able to treat it more effectively. Through the introduction and implementation of genetic testing on diagnosis, we can make a significant impact on survival rates and familial guidance. Will the Minister inform us what the Department’s position is on automatic BRCA gene testing for women diagnosed with ovarian cancer? What discussions has she had with NHS Scotland about its existing programme? What discussions does she plan to have with counterparts in Northern Ireland and Wales about such measures? It would be welcome if she could provide clarification on who is responsible for implementing BRCA testing, as there is a degree of confusion over the current arrangements.

In bringing forward modern genetic testing techniques, we can improve survival rates for this terrible and sad illness and put us, as women, in a more empowered position where we can make the best informed decisions on our treatment and the well-being of our close relatives. I look forward to the Minister’s response to the various issues I have outlined.

[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.