Ovarian Cancer (Gene Testing)

Paul Burstow Excerpts

Tuesday 4th November 2014 Westminster Hall

[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.