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MMI 10 Year Anniversary
Multiple Myeloma Ireland was established in 2013, but its founders were helping people with the “little-known” blood cancer many years before that.
In 2008, Mary Kelly, advanced nurse practitioner in haematology at Tullamore Hospital, was responsible for setting up the first support group for multiple myeloma in Ireland.
Despite the fact that almost 400 people will be diagnosed with the cancer each year, it had stayed resolutely under the radar, with its vague symptomatology and low public awareness contributing to delayed diagnosis and lack of general support.
The success of the support groups and related awareness campaigns led to the establishment of Multiple Myeloma Ireland and it received charity status in July 2013. Co-founder, past chair and current vice-chair Kelly is thrilled to celebrate the 10-year anniversary of an organisation that has helped and supported hundreds of people with multiple myeloma, as well as their families and caregivers.
And this support filled what was a gaping chasm for multiple myeloma patients. Kelly acknowledges that for many people who receive a diagnosis of multiple myeloma, those words are “not part of their vocabulary or their lives”. “For the majority, the unknown nature of multiple myeloma adds an additional layer of concern or anxiety to their natural fears about their diagnosis.”
These fears could be expressed and discussed with other people in the same boat at the peer-to-peer support group meetings, which quickly sprang up in different counties and regions (there are now eight in total). According to Kelly, Multiple Myeloma Ireland was “very much developed from the grassroots, led by patients”. The activities of the first support group ultimately led to the establishment of a wider network of patients, carers and healthcare professionals. “We are all volunteers working in partnership towards the one goal, of advancing myeloma care.”
And these volunteers are many, all bringing their own expertise and skills to the table. “No charity exists without the commitment and dedication of its board members, with each bringing a different perspective and contributing to the successful organisation we are today,” notes Kelly, adding that over the past decade, more than 30 individuals have volunteered and served on the board, which consists of patients, carers, and healthcare professionals and is supported by four medical advisors. “I would like to thank all past and present board members for their unfailing passion and direction,” Kelly says.
The headline event for Multiple Myeloma Ireland is, of course, its yearly Patient and Family Information Day. “These are an annual opportunity for patients and families to meet and hear about multiple myeloma and now amyloidosis from experts,” Kelly explains. “Our aim is to provide information and support to assist people in managing their illness and making informed decisions about their treatment. What was very clear from our first information day was how much patients benefited and wanted to hear from other patients. We are grateful to all patients and carers over the past 10 years who have so bravely shared their lived experience.” On a day-to-day basis, the charity’s website and social media accounts provide a richly-stocked repository of information, links and interviews with multiple myeloma experts, clinicians and patients, as well as details of fundraising events.
Multiple Myeloma Ireland is also now playing a key role in shaping the research landscape in multiple myeloma; since 2019, it has offered educational grants, with €40,000 already awarded and a further €20,000 commitment for 2023. “Our recipients help raise awareness of MMI by presenting their research at local, national and international conferences and feature our logo on associated posters and presentation materials,” explains Kelly. Patient and public involvement (PPI) in research is also gaining momentum in Ireland, and MMI is working with clinicians, researchers, and industry to ensure multiple myeloma patients get to play their part. “PPI is now a necessary and indeed a critical component of all aspects of the research process as we recognise and appreciate that patients and carers are the end users of health services research.”
And it is thanks to clinical research that has meant significant progress has been made in the management of multiple myeloma in recent years. Professor Siobhan Glavey, Chair and Professor in the Department of Pathology at the RCSI and consultant haematologist at Beaumont Hospital, has been a long-time supporter of Multiple Myeloma Ireland. She emphasises the “major shift” that has taken place in the past decade when it comes to treating the disease.
Ten years ago multiple myeloma treatment consisted mainly of three types of drugs – proteasome inhibitors (bortezomib), immunomodulatory drugs (lenalidomide, thalidomide) and chemotherapeutic agents (melphalan, cyclophosphamide). “These were very effective treatments and in newly diagnosed younger patients, were typically followed by an autologous stem cell transplant,” explains Glavey.
“This treatment sequence produced very good outcomes in many patients but for patients that did not respond to these treatments options were limited. Despite the success of these treatments many patients with MM still did not achieve long term remission.”
Yet clinical research has led to the development of many newer types of treatments over the past decade, the most impactful of which were the advances in immunotherapies, Glavey says.
“This has brought hugely positive outcomes for patients with many types of cancer. In myeloma this has led to the development of monoclonal antibodies, like daratumumab and isatuximab, which directly target the myeloma cancer cell,” she explains. So-called “living” immunotherapies are the future of multiple myeloma care, she notes; these include sophisticated specially constructed immune cells (T-cells, NK-cells) that are capable of finding and killing myeloma cancer cells in the patient. “Examples are CAR-T cells and other forms of T-cell immunotherapies that are currently available in clinical trials in Ireland.”
These new treatments have led to unprecedented increases in survival for patients; the five-year survival of people diagnosed with multiple myeloma has increased from 27 per cent in the 1990s to 65 per cent in 2014-18.
Some things haven’t changed, however, Glavey notes that several clinical trials have shown that autologous stem cell transplant is still the treatment of choice for younger patients with multiple myeloma, after they receive their initial treatment. “This type of stem cell transplant has been part of the sequence of treatment for multiple myeloma for decades and for the time being it is still an important anti-myeloma strategy.”
With the growing complexity of treatment, and most patients now receiving at least three if not four treatments in combination, the role of Multiple Myeloma Ireland in terms of offering support and education to the growing patient cohort has become even more crucial, Glavey says.
“Multiple Myeloma Ireland facilitates patient education and advocacy,” she says. “Now more than ever before the voice of the patient is central to how multiple myeloma treatments are developed and how research is carried out. Patients need support and education to understand how they can advocate for themselves and other patients to enable best outcomes. Multiple myeloma is still an invisible disease in Ireland and patient voices are needed to change that. Secondly, given the complex nature of this cancer, and the many different treatments out there, Multiple Myeloma Ireland provides support to patients and their caregivers at the most challenging and distressing time in their lives.”
From that very first support group meeting in 2008, to achieving charity status in 2013, to celebrating its 10 year anniversary, Multiple Myeloma Ireland is proof that ‘sometimes small and modest things can become very large and impressive things with time”, Kelly says.
“It’s wonderful to be celebrating a decade of successful support, encouragement, information, and progress,” she says. “Through steadfast dedication and collaboration, we have accomplished a great deal and our vision is bold for the next 10 years and beyond.”