Hive Cancer Support invites you to a special screening of the People’s Emergency Briefing at Féile Festival on 14th August 7pm, in The Nerve Centre This powerful and accessible short documentary sets out the real and immediate impacts of climate and nature breakdown on our health, food systems, economy, and communities. It brings together expert insight with a clear message: this is not a distant threat. It is happening now, and it affects us all.
As an organisation committed to community health, we believe this conversation is essential. This Screening offers an opportunity to engage with the evidence, reflect on what it means locally, and consider the actions needed to protect our future.
We strongly encourage you to attend and be part of this important moment.
Tickets are free but limited, so book now using the QR code attached.
Hearing the words acute myeloid leukaemia, or AML, and acute lymphoblastic leukaemia, or ALL, can be frightening. For most people, it is not just the diagnosis itself. It is the speed of it all. New words, new tests, the need to make urgent decisions. A lot of fear, and often not nearly enough of this is provided in plain language. AML and ALL are both acute blood cancers, which means they usually develop quickly and need fast specialist care. AML is more common in adults, especially older adults. ALL is seen more often in children, although adults can develop it too. On a global level, studies based on 2021 burden data estimate roughly 144,645 new AML cases worldwide in that year, while the global age-standardised incidence rate for ALL was estimated at 1.37 per 100,000 people, (1,2). It is worth pausing on two words that often come up in discussions like this: incidence and prevalence. Incidence means the number of new cases diagnosed over a set period of time, usually each year. So when we talk about incidence, we are talking about how many people are newly told they have AML or ALL. Prevalence is different. That means how many people are living with the disease at a given point in time, whether they were diagnosed recently or years ago. In simple terms, incidence tells you how many new doors this disease knocks on each year. Prevalence tells you how many people are living with its impact overall. In the United States, for example, the rate of new AML cases is 4.3 per 100,000 people per year, and an estimated 79,317 people were living with AML in 2022 (3,4). AML and ALL are not tiny, obscure conditions affecting only a handful of families. They are serious diseases with a real global footprint, yet, to most people, they are still poorly understood until they arrive uninvited into their own lives. One of the reasons these diseases can be so difficult is that the early signs may not look dramatic at first. People may feel unusually tired, become short of breath, bruise more easily, get frequent infections, develop fevers, notice bleeding from the gums, nose or feel generally unwell.
In ALL, some people may also have swollen glands or bone pain. These symptoms do not automatically mean leukemia, of course, but when they persist or start to build up together, they need proper medical attention. Once diagnosed, treatment usually starts quickly. This is where people often hear the phrase standard of care. That simply means the treatment doctors currently use as the accepted starting point, based on the best available evidence today. In adult AML, remission rates vary by age, but for many younger adults remission is achieved in well over 65 percent of cases after induction treatment. Induction treatment is the first phase of treatment given soon after diagnosis to try to bring the leukemia under control as quickly as possible. Its aim is to push the disease into remission, which means reducing the leukemia cells to a very low level so the bone marrow can start making healthy blood cells again. It is worth noting that in adult ALL, around 60 to 80 percent of adults usually achieve complete remission after initial induction therapy (5,6). Getting into remission is hugely important, but remission does not always mean the disease is gone for good. Some people do not respond as hoped to first treatment. Others respond well and then relapse later. This is one reason doctors pay such close attention to the exact subtype of leukemia, the genetic findings, and how deeply the disease has responded to treatment. AML and ALL are not single diseases with one fixed story. They are broad groups of disease, and what happens next can vary a great deal from one person to another. That is exactly why it helps to look beyond standard treatment alone. This does not mean standard treatment is not important, it absolutely is. However patients and families should know there may be more to discuss. The very encouraging thing for patients and families is that research is constantly evolving. New targeted drugs are being developed, new combinations are being tested. And better ways of identifying who may benefit from which treatment are being studied all the time. This is really important for patients of today and tomorrow. We must accept though that the phrase clinical trial can sound intimidating when people first hear it. It can make families think of risk, uncertainty, or being experimented on. In reality, clinical trials are how medicine improves. They are how doctors learn whether a newer therapyworks better, works more precisely, or causes fewer side effects than what came before. They are also one of the ways some patients may gain access to the latest treatments earlier than they otherwise would. While research can sound scary from the outside, it can also represent something genuinely hopeful. It can mean access to cutting-edge therapies. It can mean another option if the first one does not work as hoped. It can mean a treatment approach that is more closely matched to the biology of the disease. For some families, it can mean a sense that every sensible avenue is being explored, not just the obvious one. The problem, of course, is that finding and understanding this information is not easy. When someone is dealing with the shock of an AML or ALL diagnosis, asking them to trawl through technical trial listings and complicated eligibility criteria is a bit ridiculous. It is hard enough getting through the day without trying to decode a small forest of acronyms. That is where clearer tools can help. A platform like pRxTrialPort can give patients, families, and caregivers a more accessible starting point for exploring what research may be available in AML or ALL. It is not a replacement for a hematology team, and it is not a substitute for medical advice, yet it can help people understand what may be out there, feel more informed, and have better conversations with the clinicians caring for them. When someone is facing AML or ALL, they need more than jargon and more than a rushed explanation. They need clarity, support, and a clear sense of what options may exist now, what could come next, and where research might open another door. In a situation like this, people should not be left wondering whether anyone remembered to look beyond the obvious. They deserve to know that every reasonable path is on the table.
There is a vast amount of research taking place around the world, but many people never see what may be available to them.
This hub, provided by pRxEngage, allows you to explore trials by condition and location and access clearer, plain language trial information to support decision making.
It provides structured, plain language guidance so individuals can understand what a study involves, what participation may look like, and what questions to ask.
The aim is to help people decide whether a trial feels right for them personally, based on their needs and circumstances.
In doing so, pRxEngage supports informed choice and patient agency, bringing a more human lens to a process that can often feel technical and overwhelming.
Maureen Collins, Project Manager at Hive Cancer Support said: “Cancer doesn’t discriminate and it has always been a cornerstone of our work to challenge and redress inequalities in cancer prevention, diagnosis and treatment experienced by people in marginalised and under resourced communities .
“We know first hand from our members who have taken part in clinical trials what a life line they can be, but we also know how challenging and stressful it can be trying to find one that’s the right fit.
“By hosting the pRxEngage clinical trial hub on our website, we’re helping to make reliable clinical trial information more accessible for people living with cancer and their families.”
Hive Cancer Support and Team Sorcha team up every January to mount a month long public campaign to raise awareness of issues around cervical cancer.
This year, they are using their platform to ask the government to hold a full statutory enquiry into misread smear tests which affected women across the North, including Derry.
There is a long standing history of collaboration between Hive Cancer Support and Team Sorcha, stretching back over 10 years.
Team Sorcha was set up in memory of Derry woman Sorcha Glenn who passed away from cervical cancer aged 23.
Sorcha’s request for a smear test was refused because of her age and she went on the receive a cervical cancer diagnosis.
She spent the final months of her life raising public awareness around this issue and after she passed away her family vowed to continue her crusade and set up Team Sorcha in her memory.
Together, Hive Cancer Support and Team Sorcha have campaigned on cervical cancer issues such as access to smear tests on demand and screening for HPV and have taken these campaigns to Stormont, Westminster and the Dáil.
In 2023 a quality assurance review found a significant number of smear tests — some dating back several years — in the Southern Trust may have been incorrectly read. This meant some women’s cervical cancer went undiagnosed and untreated. In other cases pre cancerous cells went undetected and the women affected went on to develop cancer.
A UTV investigation revealed that the Western Health and Social Care Trust held a small review into the work of one under-performing screener in 2018.
A Serious Adverse Incident report was compiled in 2019 focussing on this review.
Hive Cancer Support is currently supporting a number of women whose smear tests were misread.
Maureen Collins, Project Manager at Hive Cancer Support, said: “This isn’t just about test results — it’s about real women, real lives, and the trauma of finding out you might have been failed by the very system meant to protect you.
“We owe these women honesty, transparency, and swift action.
“This misreading of smear tests has been catastrophic for women who have gone on to develop cervical cancer but it has also reignited public concern over patient safety and transparency in our health system.
“Together with Team Sorcha we are demanding a full, independent investigation.
“This is about accountability, trust, and the right to safe healthcare.”
