World Lymphoma Awareness Day – Focusing on patients and their gratitude

Every year on 15th September, cancer organisations mark World Lymphoma Awareness Day to raise awareness about lymphoma and the particular emotional and psychosocial challenges facing patients and caregivers suffering from different forms of lymphoma. 

World Lymphoma Day was initiated in 2002 by the Lymphoma Coalition, a worldwide network of 83 lymphoma patient groups based in Ontario, Canada, whose mission is enabling global impact by fostering a lymphoma ecosystem that ensures local change and evidence-based action. One of their key activities is to provide a centralised hub of reliable current information and a platform for member organisations to share resources, best practices, policies and procedures.

Lorna Warwick, CEO of the Lymphoma Coalition, has been working in the cancer space since 2003.

What is particular about lymphoma in the way it affects patients, their families and the care and support they receive?

There is a huge scope of diseases categorised as lymphoma, over 80 different sub-types. Lymphoma is a cancer of the white blood cells, called lymphocytes, and can involve both B-cells or T-cells/Natural Killer cells. But they can be broadly separated in two main types: low-grade or indolent or chronic, where the cancer cells grow and spread slowly; and high-grade or aggressive or acute lymphoma, where the cells grow and spread quickly but that have better cure rates as chemotherapy can effectively kill the cancer cells.

While patients with low-grade lymphoma often react positively to treatment, the cancer is characterised by cycles of remission and relapse, which means that this type of lymphoma is generally considered incurable. However, it mainly affects patients over 60. This means that the person could die of other factors rather than directly from the cancer. So then it becomes a question of quality of life.

Lymphoma is characterised by fatigue and this is made even more acute with treatment, not only chemotherapy but also targeted medication and other new drugs that have increased survival rates but that also cause fatigue. Patients indicate fatigue has the biggest impact on their wellbeing overall.

There has been a lot of research in the lymphoma space, leading to a number of new treatments, which is good news. Often, however, these new therapies are very costly. This is a concern not only for individuals but also for society at large in terms of working towards greater equity in cancer care.

What are the primary activities of the Lymphoma Coalition in working towards better outcomes and greater equity?

The two pillars of activity of the organisation are information and advocacy. More than 735,000 people are diagnosed with lymphoma every year globally but there is a lot of misinformation around the disease and a great discrepancy in the quality of information among different regions. Our aim is to ensure that lymphoma patient organisations have the right information so that patients can make informed decisions about their treatment, lifestyle and other aspects of living with cancer that may not be immediately addressed by the medical community.

We also work on helping the medical community understand the patient experience. We do a global patient survey every two years and the 2020 survey had almost 12,000 respondents worldwide. Again, the primary medical issue affecting wellbeing that comes up is fatigue, which can last many years after remission. Yet many patients don’t talk about it with their doctors, they don’t really see it as part of the medical treatment and think they just have to cope. But there are things that cancer patients can do that can help, such as balancing their schedules and addressing other underlining causes with appropriate medication. Then there is the fear of relapse, especially in cases where relapses are common, which taints every visit to the doctor. 

Drawing on research from scientific journals, we address problems of fatigue and fear and other patient-centred concerns in reports aimed at the medical community. We highlight how they can help patients cope and provide knowledge on the different emotional and psychological stages of the disease that a patient goes through. For patients, the reports can provide them with questions for their practitioners to assist in their experience.

When and how did World Lymphoma Awareness Day (WLAD) begin? 

World Lymphoma Awareness Day was initiated by the Lymphoma Coalition in 2004 to address the information gap and raise awareness about this disease, whose symptoms – fever, fatigue, swollen glands – are often similar to less serious diseases like the flu. This led to patients sometimes getting diagnosed late as there was a lack of diagnostic knowledge in the medical community, in the sense that doctors would not always consider lymphoma when examining patients. One of our previous campaign themes for WLAD was “Know your nodes” – to inform the general public on what is normal and abnormal when it comes to swollen glands or lymph nodes, and when to see a doctor about them.

The theme this year is “World of thanks”. Can you elaborate a bit more on this theme and how it was chosen, and how it has been affected by the coronavirus pandemic?

This wasn’t the original theme we had chosen back in January, which was focused on an advocacy initiative and particularly on the use of the terms “Hodgkin” and “non-Hodgkin” in categorising lymphoma types.[1] The problem with these terms is that "non-Hodgkin lymphoma" does not give any relevant information for a patient and can even lead to misinformation, especially when patients look for it on the internet, as there are so many different subtypes that are grouped under this term. They really need to know and understand their specific subtype to have access to relevant information and make the right choices.

As coronavirus evolved into a global pandemic, the timing for such a campaign seemed wrong and there was concern that we would not be able to engage the right audience, as health systems were focused on the pandemic. We postponed it to next year and decided to choose a theme that our member organisations could engage with, and campaign and fundraise on, but that wouldn’t be too time-consuming or resource-heavy, considering how much cancer organisations have to deal with because of the pandemic. We also usually get good engagement with the medical community, but now they have been under stress and many have been overworked. We needed a campaign that didn’t overstress them either.

The idea is that each individual can decide who and what he or she is thankful and grateful for. So many people emerge from their cancer experience with life changes, a complete shift in how they view life and a profound sense of gratitude. We wanted to give them an opportunity to express that sense of thanks, to show gratitude to those who help people living with lymphoma, especially within the context of the pandemic.

We hoped to put some positivity into the world amidst so much negative news!

Indeed, this special day is currently taking place during the coronavirus pandemic, which has heavily disrupted many aspects is of cancer care, as we know from a recent report by WHO and the experience of cancer organisations on the ground. How has COVID-19 particularly affected lymphoma organisations?

Our patient organisations are completely disrupted, in their funding mechanisms and in dealing with a significant rise in patients and caregivers calling them for reliable information. Lymphoma patients have highly compromised immune systems and are therefore even more exposed to the pandemic, are more likely to be hospitalised and for longer times if they get coronavirus.

The information and messaging that were being conveyed were very confusing in the beginning. Treatments were getting switched to balance concerns between the risk of catching COVID-19 and the need to treat the cancer treatment. 

We have more information now but the data not yet been fully analysed, so it’s difficult to get a clear picture of the outcomes of some of these choices. 

It will also be important to understand how other developments, such as telemedicine, look like moving forwards. It has developed dramatically in the past few months and has been of great assistance, but lymphoma is a disease that relies a lot on physical feel and physical tests. Finally, a lot depends on where people live and the health systems they are able to access.

FOOTNOTE

[1] Lymphomas have been generally categorised either into Hodgkin lymphoma or non-Hodgkin lymphoma. This categorisation is based upon the name of the doctor, Dr Thomas Hodgkin, who first described what was then labelled Hodgkin’s Disease in the early nineteenth century. From www.lymphomacoalition.org.