Joining forces to help patients during the Covid-19 pandemic: International cancer patient groups
In this series, we’re sharing a handful of examples of how health campaigners across the world work together to provide exceptional support to patients and their loved ones during difficult times.
Often, the valuable work of patient groups can be overlooked or underestimated, especially when the news cycle is dominated by vaccine rollouts and broader healthcare stories. As we come to the close of two turbulent years resulting from the Covid-19 pandemic, PatientView would like to recognise some of the valuable contributions made by these health campaigners by focusing on three case studies.
The examples provided, however, simply illustrate the breadth of activities patient groups undertake for the good of all. This week we’re looking at the impact that a huge collaboration among international cancer patient groups (the Global Cancer Coalitions Network) has had and how it’s evolved over time.
International cancer patient groups join forces to minimise the devastating Covid-19 impact on patients
Prior to the pandemic, death rates in some types of cancer had started to stabilise, or even decrease, as patients took a more active role in primary and secondary prevention and their own care. Real progress was visible as cancer services were improving and more treatments were becoming available.
The pandemic, however, has severely disrupted cancer detection and care services globally. As a result, the first year of the pandemic (2020) saw an approximately 40% drop in diagnoses of cancer. (Source: Joint letter on COVID-19 and cancer from the European Cancer Patient Coalition, 2021).
Patient groups know that cancer will not simply wait for Covid-19 to pass, so in the wake of the pandemic the Global Cancer Coalitions Network (GCCN) formed.
In May 2020, five international and umbrella cancer patient groups came together as a joint initiative to launch a survey of their member organisations. Their aim was to document the concerns around, and impact of, Covid-19 among their member groups.
The initial survey by the five umbrella groups, who represent 400 cancer patient groups around the world, uncovered stark insights such as:
- Every aspect of cancer diagnosis, surgery, treatment, follow up, clinical trials and support has been affected. For some, treatment has been withdrawn altogether, for others it has been altered.
- Almost all (89%) organisations have had to alter their services for people with cancer.
- Only 5% of those surveyed say they are confident of their financial position at the time of the survey.
(Source: The Impact of COVID-19 on Cancer Patient Organisations June 2020 ©World Ovarian Cancer Coalition, World Pancreatic Cancer Coalition, Lymphoma Coalition, World Bladder Cancer Patient Coalition, ABC Global Alliance, 2020.)
The survey in June 2020 gave an insight into challenges faced by the member organisations that provide a wide range of services including research funding, advocacy, raising awareness, health professional education and information services for patients.
Today, the Global Cancer Coalitions Network has developed into a collaboration of nine global cancer coalitions and alliances, representing 750 patient organisations working on behalf of 14 million cancer patients around the world.
These include the ABC Global Alliance, the Global Colon Cancer Association, the Global Lung Cancer Coalition, the International Brain Tumour Alliance, the International Kidney Cancer Coalition, the Lymphoma Coalition, the World Bladder Cancer Patient Coalition, the World Ovarian Cancer Coalition, and the World Pancreatic Cancer Coalition.
Since the first survey in June 2020, the pandemic has shown to be both persistent and aggressive, causing these efforts to shift from identifying initial problems to ‘building back better’, seeking solutions that can withstand a new health landscape that’s unlikely to change soon.
Follow-up work included another survey in December 2020 in which 104 organisations from 46 countries participated. The GCCN wanted to learn whether the grim predictions of June 2020 had materialised, and how the vital organisations it supports were coping. Unfortunately, the second survey revealed that six months on little had changed. Some key insights uncovered at this point in time were:
- All forms of fundraising were affected.
- Over one in ten organisations closed temporarily.
- Staffing numbers decreased by nearly 20% on average and volunteer numbers by 70%.
- Demand for services increased during waves of the pandemic.
- Only one-third of the organisations that fund or undertake research saw their projects unaffected by the pandemic.
(Source: COVID-19: Impact on Cancer Patient Organisations Worldwide in 2020, Global Cancer Coalitions Network 2021.)
At the beginning of 2021 the GCCN took a step beyond research and surveys, holding their first ‘Coalition Connection’ virtual event coinciding with World Cancer Day on 4th February 2021. This interactive session explored the effects that the COVID-19 pandemic has had on the global cancer community and released the ‘COVID19: Impact on Cancer Patient Organisations Worldwide in 2020’ paper.
Their work continues – only a couple of months ago on 23rd November 2021 the GCCN held their second (virtual) event, ‘Coalition Connection 2: COVID19 Vaccines & Cancer’. Focus has shifted and become more advanced, as the event covered vaccine hesitancy in racialized and immigrant communities, the dispelling COVID19 vaccine myths, and the results of a recent COVID 19 Vaccine and Brain Tumour Patient Survey.
The establishing of the GCCN, their research and events all validate the widespread and shared experiences of those (patients and non-patients) going through cancer diagnostic-and-treatment pathways. Beyond creating an evidence base for pushing the cancer patient agenda forward, those going through diagnosis and treatment can take comfort in having their voices heard and not feeling alone in their experiences.
To summarise, and echo the words of the groups involved, cancer will not wait for COVID-19 to pass, if it ever will, and the patient organisations are the key to minimising the devastating impact on people with cancer.
If you are a health campaigner, you can share your experiences and views in our 2021/2022 Corporate Reputation of Pharma survey.
You can also read more about how PatientView works with patient groups.