More than 140 men and women affected by the BRCA1 or BRCA2 gene attended the sixth annual Marie Keating Foundation BRCA conference in Dublin today, at a time of uncertainty with delays in accessing genetic testing and reconstructive surgery reported.
29th April 2022: The Minister for Health, Stephen Donnelly has opened the Marie Keating Foundation’s sixth annual BRCA conference, sponsored by Astra Zeneca and MSD in the Clayton Hotel, Dublin Airport, discussing the unique needs of BRCA carriers in Ireland.
Opening the Conference via video link the Minister for Health discussed the continued commitment of the Marie Keating Foundation to the needs and support of those affected by a BRCA mutation, thanked members of the Foundation BRCA support network for sharing their experience with the National Cancer Control Programmes Health Needs Assessment Report, and for using their voices to shape the development of future BRCA services in Ireland.
Due to the impact of the COVID-19 pandemic, and many years of under-funding long waiting times for essential services such as genetic testing, reconstructive surgery and cancer surveillance services are becoming a regular occurrence in the public system, with some people waiting between two to four years for an initial referral.
Speaking at the days event, Director of Nursing Services Helen Forristal explained, ‘Testing positive for a BRCA gene alteration not only impacts those tested, but also their families and wider circle. As a genetically inherited alteration, passed down through family lines, a BRCA gene significantly increases a person’s risk of developing cancer in their lifetime. To have this information, and then to be told you could be waiting up to and beyond two years to be seen or even tested for the alteration leads to undue anxiety, emotional distress and uncertainty for this already vulnerable community. This is why support services like the Marie Keating Foundation’s annual BRCA Conference, and our Peer to Peer Volunteer Support Service is so vital and why we are seeing an increase in demand for this kind of support and information.
Due to demand for support and information created after their 2020 BRCA Conference, the Marie Keating Foundation created their first online support group for those affected by a BRCA gene mutation. Available free of charge to members across Ireland, this community beginning with just 9 members has grown by 777% in the last two years. Dr Triona McCarthy from the National Cancer Control Programme, a speaker at the Foundation’s annual conference, applauds the Foundation’s commitment to those affected by a BRCA gene mutation in Ireland, stating 'The support services the Marie Keating Foundation offers, including information about BRCA, peer support and a BRCA Support Group, are an invaluable resource to those identified with a BRCA gene alteration. The NCCP is particularly grateful to the Marie Keating Foundation BRCA Support Group for their input to the NCCP BRCA Needs Assessment undertaken between 2021 and 2022, which will inform future service developments.'
The theme of this year’s conference is “Engaging with BRCA in the family way”. Those attending the conference in person and via Zoom link heard from expert speakers such as Yvonne O’Meara, Women’s Cancer Survivorship Co-ordinator, surgeon Dr Reem Salam and experts in family planning Dr Eithne Lowe on egg freezing and Dr Deirdre Lundy on menopause, addressing the emotional turmoil as well as coping mentally with the impact of a positive BRCA alteration,
Leaders in the field of BRCA support in Ireland, two members of the Marie Keating Foundation nursing team and patient advocates from our online support group were selected by the National Cancer Control Programme to be a part of Ireland’s first BRCA steering committee to assess the unmet needs of those affected by a BRCA gene alteration.
As there is no national registry for those that test positive with a BRCA gene, this steering committee is the first step in the right direction for adequate and timely supporters for BRCA carriers in Ireland and their families.
To help provide much needed immediate support to this community, , the Foundation trained and introduced six new BRCA peer to peer support volunteers together with four of our existing trained volunteers, at today’s conference who will help to provide community support and peer to peer guidance to those effected which is free and open to anyone in Ireland to avail of.
Newest member of their Peer to Peer network, Krista Costello shares her excitement at being able to provide the support she didn’t have when originally tested, stating “I initially came in contact with the Marie Keating Foundation because I was looking for a community of people that could help me on my journey. There are so few reputable sources of information out there for people with a BRCA gene mutation, so when I discovered the Foundation’s support group, their Whatsapp group chat and went through the Peer to Peer process with Bernie and one of their volunteers myself, I became aware of the importance of simply having someone to speak to that understood what I was going through. That’s why I have decided to become a BRCA Peer to Peer volunteer, to help support others like me that just need a listening ear or someone to share their experience. It really can make all the difference.”