For those who may not be familiar with you – what is PALEMA, and what unmet need are you seeking to address?
PALEMA is a Swedish non-profit patient association representing individuals affected by some of the most aggressive cancers of the upper abdomen: pancreatic, liver, bile duct, gastric and esophageal cancer. These diagnoses share extremely poor prognoses, and progress in healthcare and research has been significantly slower compared with many other cancer types.
The association was founded in 2015 and is currently the only organization in Sweden with a unified focus on these diagnoses. Together, they account for approximately 20 percent of all cancer-related deaths in Sweden, with pancreatic cancer alone representing around half of this figure.
PALEMA works both with immediate support — through information, community and counseling for patients and their relatives — and with long-term advocacy. The goal is to improve care pathways, increase access to clinical trials, and drive the development of new treatments for these severely underserved diagnoses.
You use the term “Blåljuscancer ”. What does it mean – and why is an umbrella concept needed?
“Blåljuscancer”, or “blue-light cancer” is named after the blue lights used by emergency services in Sweden, and is PALEMA’s umbrella term for the most acute, aggressive and difficult-to-treat cancers of the upper abdomen. The term reflects the reality that patients face: the disease progresses rapidly, is often detected late, and every day can be decisive for survival and treatment opportunities.
The purpose of the term is to make clear that these diagnoses must be managed as acute conditions already at the stage of suspicion. Despite this, treatment pathways are often generic, with time targets that do not reflect the aggressiveness of these diseases. The result is delays, lost treatment windows and, in the worst cases, poorer survival.
By bringing these diagnoses together under a single concept, it becomes easier to highlight unmet needs, drive change, and argue for faster and more differentiated care pathways — including improved access to specialist expertise and clinical trials.
From a patient perspective, what is the greatest medical need in pancreatic cancer and other “Blåljuscancer”?
The greatest medical need is access to more effective oncological treatments. In pancreatic cancer, surgery is currently the only potentially curative option, yet only around 25% of patients are operable at diagnosis. Even after surgery, the disease recurs in the majority, contributing to a five-year survival rate of approximately 7%.
Current systemic treatment options mainly consist of a limited number of chemotherapy regimens with modest benefit. Immunotherapies and targeted therapies — which have transformed treatment in other cancers — are, in practice, available to only a very small proportion of these patients.
From a patient perspective, this is not acceptable. We believe that molecular tumour profiling should be carried out systematically for all patients with Blåljuscancer, not only to identify potential treatment options and enable more individualised care, but also to build a knowledge base for future research, innovation and the development of new therapies. This should not be regarded as a cost, but as a necessary investment if survival outcomes are to be improved.
Given the seriousness of the prognosis, the balance between efficacy and side effects takes on an added urgency. Many patients are willing to accept intensive treatment for the chance of extended survival — provided decisions are made in dialogue, with clear information and respect for the individual’s priorities.
How do you view clinical trials and innovation – what needs to improve?
For pancreatic cancer and other Blåljuscancers, clinical trials are often the only realistic pathway to improved survival. Despite this, trial access is limited, and too few patients are given the opportunity to participate.
Sweden needs to strengthen its attractiveness as a country for clinical trials, particularly in neglected diagnoses. This requires faster and more predictable regulatory processes, stronger research infrastructure within healthcare, and clear incentives for both academia and industry to invest.
Today, diagnoses with larger patient populations and better prognoses tend to attract more resources, while diseases with high mortality are pushed into the background — not because the needs are smaller, but because patient groups are fewer, voices are weaker, and healthcare systems are better designed for success stories than for the most difficult challenges. Without targeted investments, this imbalance risks persisting, despite the fact that the medical need is greatest precisely here.
What message would you like to send to decision-makers and healthcare providers?
Blåljuscancer-diagnoses must be prioritised according to their true severity. A “one size fits all” model for cancer care does not work when diseases differ so dramatically in aggressiveness and prognosis.
We want to see clearer national accountability, faster care pathways, and the systematic integration of research and clinical trials into routine care for diagnoses with extremely high mortality. Passivity is not an option. When every day matters, delays can mean lives lost.
Our hope is that increased awareness will lead to action. Only when healthcare, decision-makers and society at large prioritise Blåljuscancer according to its actual medical need can we begin to see real improvements in survival and renewed hope for those affected.
Watch the recording of the Webinar
Alligator participated in PALEMA’s webinar on World Pancreatic Cancer Day, November 20, 2025, and spoke about “Mitazalimab – a promising immunotherapy for the treatment of metastatic pancreatic cancer”. You can watch that session via the button below.
