Erin McGreehan (Fianna Fail)
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I welcome the Minister of State. October is breast cancer awareness month, which is why I want to highlight this important matter. The importance of investing in the facilitation of breast cancer, BRCA, gene testing and the consequential support for those who receive a positive result is an issue that not only affects individuals but also entire families. We must strive to empower women and men to prioritise their health and well-being, and support them on what can be an incredibly difficult journey.

The BRCA gene is known as the breast cancer susceptibility gene and it has been one of the most significant discoveries in modern times. It facilitates people to identify the gene and helps to determine a person's susceptibility to breast or ovarian cancer, enabling earlier intervention and potentially life-saving measures. However, despite the potential, many individuals are unaware of their genetic disposition, exposing them to unnecessary risks. The Government, the State and the HSE must promote and facilitate further BRCA gene testing, which will empower individuals to take control of their health. By providing accessible testing options, we can encourage people to understand their genetic make-up and make informed decisions regarding their future. Knowledge is power and, in this case, the power lies in a person understanding the potential risk and taking proactive steps to address it.

For those who receive a positive BRCA gene result, the journey does not end with that diagnosis. Rather, it is the beginning of a new chapter. It is our duty to provide the necessary care, guidance and support for individuals to make those decisions about elective surgeries and subsequent care, which includes mastectomies, oophorectomies and the associated reconstructive procedures.

There is a huge cost barrier for someone trying to get a BRCA gene test. I have heard of individuals paying €1,300, another paid €500 plus €300 for a consultant, and another lady I know paid a private hospital €1,400. To get that knowledge and to be able to take control of their own health is costing people. This means only wealthy people can empower themselves by getting this test, or perhaps those who can get a loan for €1,400.

There is a waiting list of up to two years or potentially longer to get a test if someone is considered by a consultant to be in a high-risk category. That is two years on a public waiting list to even know whether they are at risk and whether they are potentially a ticking time bomb, but they do not know whether they have the BRCA gene during that time. We know the BRCA gene test will prevent people from getting sick. I have lost two aunts to breast cancer. It is so important. It is curable yet we are not getting to people quickly enough. We have potentially thousands of people walking around with a BRCA gene and we are not supporting them to get tested. I would like to see huge investment in our public waiting lists in this regard, with support from GPs right up to consultants in hospitals like St. James's and the Mater. This will support women, families and men, and given that men can often develop breast cancer through the BRCA1 gene, it is important for both men and women.

I look forward to hearing the Minister of State's response. It is a very important issue and important that we highlight it in October, which is breast cancer awareness month.

Martin Heydon (Kildare South, Fine Gael)
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I thank Senator McGreehan for raising what is a very important issue. It is timely, given the significance of this month for promoting the risk in this area.

The use of genetics and genetic testing in cancer care has developed and changed in recent years. The focus has shifted from that of prevention to a more holistic approach to cancer care. Developments in genetic and genomic medicine mean a greater understanding of the cancer a person has. This, in turn, leads to more precise diagnosis and treatment.

The potential for cancer genetics services is identified in the National Cancer Strategy 2017-2026. In line with recommendations in the strategy, a model of care for hereditary cancer was launched in June of this year. This will inform the development of services for the identification and management of people with an inherited cancer predisposition.

There have been several recent positive developments in genetic and genomic medicine in Ireland. The national strategy for accelerating genetic and genomic medicine in Ireland was published by the Department of Health and the HSE at the end of 2022. In 2023, the Government allocated €2.7 million to the implementation of this strategy. This allocation included the establishment of the national office of genetics and genomics and the appointment of front-line staff. Work under this strategy will enable and facilitate the implementation of the model of care for hereditary cancer. A steering group for the implementation of the national strategy for accelerating genetic and genomic medicine in Ireland was set up in April. This multi-stakeholder group is responsible for ensuring the effective delivery of the strategy’s implementation.

In terms of broader supports for patients at high risk of developing cancer, the national cancer strategy provides for the further development of a programme for hereditary cancers. This will ensure evaluation, counselling, testing and risk reduction interventions are available, as appropriate, and that services are available to patients on the basis of need. Genetic counsellors continue to be recruited to the cancer genetics services, providing support to people on their genetic testing results.

The Government’s commitment to the implementation of the national cancer strategy is evidenced by significant investment in recent years. New development funding of €20 million was allocated in 2021 and a further €20 million was provided in 2022. This funding has facilitated work in a number of areas affecting those with a BRCA gene alteration. This includes the completion of a needs assessment for those with a BRCA gene alteration, the development of a GP referral guideline for breast cancer family history, including pathways from primary to secondary care, and the development of online training for healthcare professionals delivering genetic testing embedded in oncology services. This funding has also facilitated the development of recommendations on universal tumour testing in certain types of cancer. This focuses on identifying possible Lynch syndrome, an inherited condition which causes people to have a higher risk of developing certain colorectal cancers.

The national cancer control programme will shortly commence active data collection at the locations currently providing preventative surgeries for people at high risk of developing cancer. This review will focus on patient activity and available resources.

Erin McGreehan (Fianna Fail)
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I thank the Minister of State for his response. I acknowledge that the Minister and Ministers of State with responsibility for health said they were unavailable this morning, and I got a nice email from them.

The steering group is important. It is very welcome that €2.7 million has been made available for the implementation of the strategy. I will keep advocating for the women on the ground who are worried about a family history of breast cancer and do not know whether they are BRCA gene-positive and whether they can pass that on to their daughters.

While a lot is being done, I have some follow-up questions that can be brought back to the Minister for Health. What is changing on the ground today? What has changed since the implementation strategy? How many women will be waiting and how long will they be waiting for elective procedures? How long will it be until it is not only the wealthy who are able to afford to be empowered by knowing their genotype? We want to know that for all of the population. Those are my follow-up questions.

Martin Heydon (Kildare South, Fine Gael)
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That is the nub of it.In my initial response, there was a point regarding the development of GP referral guidelines for those with family histories of breast cancer, including pathways from primary to secondary care. That is ultimately what we are talking about. Primary care is where people who have such a concern about their family history but who do not have any symptoms and who want to get checked as a purely preventative measure should go. People can be saved the pain and suffering of going through treatment for a preventable cancer by means of early intervention. Treatment can be much less invasive and those affected can have a much better quality of life. In cold economic terms, it also results in a big saving for the State and reduces pressure on our health system where these conditions can be prevented or where early intervention can help. It therefore makes economic sense as well as providing an obvious benefit for individuals and their families. We have all had family members affected by cancer and we are all personally very keen to see the national cancer strategy progressed. I will bring the specific points the Senator raised in her supplementary question back to the Ministers.