From referral to treatment and follow-up: CLL in focus

The second Annual Conference of the Chronic Lymphocytic Leukaemia (CLL) Alliance took place at the Gibson Hotel last month.

CLL Ireland is a patient-led advocacy group designed to help anyone affected by the condition to access the support, advice, and information they need.

The event featured a number of distinguished national and international speakers, including researchers, clinicians, and patient representatives.

The conference was opened by Dr Amjad Hayat, University Hospital Galway, and President of the Irish Haematology Society, who delivered an address and co-chaired the opening session with Prof Ruth Clifford. 

“To have a society like this in modern medicine is absolutely indispensable,” Dr Hayat told the meeting. He briefly described how medical treatments for CLL have evolved, saying “we need to work together and we have to work with the patients and advocacy groups to promote what we want to achieve as doctors”.

“In Ireland, I think we have made real progress, working together and working with the [National Cancer Control Programme]. But as clinicians and as a professional society, we remain committed to working on behalf of our patients to get access [to therapies],” he continued.

“It is important that we continue to work together and to have these meetings and to continue to put pressure on authorities to allow us access to these drugs.”

The conference featured a wide selection of fascinating clinical vignettes presented by doctors and patient representatives that touched on important aspects of CLL, including a talk on the healthcare needs and quality-of-life for patients with CLL in the HSE Mid-West region, delivered by Dr Kornelia Marie Dembicka, University Hospital Limerick. There were also a range of case studies, including a rare case of CLL with CNS involvement by Dr Carina Meyer, University Hospital Limerick, and CLL with borderline immunoglobulin heavy-chain mutational status, delivered by Dr Andrew Hindley (PhD), Belfast Health and Social Care Trust.

Ms Jan Rynne, Chairperson, CLL Ireland Trustee Board, discussed the importance of patient advocacy, while Prof Anne Fortune, Consultant Haematologist, Cancer Trials Ireland, provided an update on cancer trials. Ms Melissa Martin, St James’s Hospital, Dublin, spoke about a pilot programme for ‘vaccination passports’ for CLL patients, and Ms Kluivert Boakye Duah, Queen’s University Belfast, presented on the standardisation and quality control of data on Irish lymphoid blood cancers.

Additional vignettes included prospective immunophenotyping at referral by Dr Sam Grennan, St Vincent’s University Hospital, Dublin, among many other intriguing and relevant presentations and topics.