Holding up the end of the line: our role as cancer civil society organisations

On 16 March 2020,  Prime Minister Tan Sri Muhiyiddin Yassin announced that Malaysia would go into a state of lockdown termed as a “Movement Control Order” (MCO). One of my medical colleagues texted me, saying “well since you are not on the frontline, enjoy your couple of weeks at being at home.” But I wondered: do we have a role to play as civil society organisations (CSOs) working in the cancer space? Are we part of the frontline in this fight against the coronavirus? If not, do we Or should we take a backseat and let our communicable disease and public health colleagues lead?

On the eve of the lockdown, the senior management team at the National Cancer Society of Malaysia (NCSM) met. Sitting together with the Society’s President and Chairperson, Dr Saunthari Somasundaram, we did some soul-searching to answer these questions.  Interestingly, the answer arrived quickly: cancer was not going to come to a halt during this pandemic – and neither could we. If anything, this was going to be a more trying time for cancer patients. What were we going to do?

First, we reviewed and determined the client-facing services that we needed to carry out at this time. At the top of this list was NCSM’s subsidised clinical services, including nuclear medicine diagnostic services, which is primarily utilised by the public sector and low-income groups. Running a close second was the children’s halfway home, which allows children from all over the country to receive treatment at the country’s largest public-sector paediatric oncology centre. Realising that halting these services would cause delays in cancer treatment for certain public sector hospitals, we strengthened our internal safety procedures, such as instituting alternate work teams and regimented disinfection methods to lower the risk of infection for our personnel.

Second, we estimated that the lockdown was going to create a lot of mental stress and anxiety, especially among cancer patients. They had to deal with the fear of getting infected with Covid-19 as well as treatment issues they were facing, including delays in hospital consultations and postponement of surgery and chemotherapy. We took our psychosocial support service fully online; enabling our clinical psychologist, counsellors and peer supporters to be able to respond to any calls from all over the country; as well as to enable video counselling sessions to be accessible.

In addition, NCSM began organising FB live sessions in multiple languages with coping strategies and mental health tips. Our cancer hotline colleagues also actively navigated patients, helping them obtain new surgery appointments, directing them to different hospitals not involved in the Covid-19 response and, in one case, even arranging for a terminal patient to return home from overseas to be with her family.

Third, NCSM tackled the misinformation and “fake news” being propagated on Covid-19, much of which has confused the general public and cancer patients alike. We switched our communications channels to running a structured programme of information provision, myth-busting and health promotion focused on cancer and Covid-19. We have also been actively working on educating our healthcare professionals, organising, for instance, an open webinar between Malaysian cancer stakeholders and an on-the-ground oncologist from Wuhan to obtain insights on how care was delivered amidst this crisis.

Fourth, we were quickly drawn to the plight of many of our low-income patients who are now stricken with financial difficulties during the lockdown since they could not work. This was especially worse for those in the informal sector who now had no source of income at all. The impact of the pandemic and lockdown has been devastating, and working with our wonderful supporters we have put in place a network providing many patients with much-needed daily necessities.

Fifth, during the lockdown, we continued advocating for cancer patients and protecting their interests. The government announced that no one would be allowed to travel over long distances. Unfortunately, since oncology units in the public sector are only in specific locations, many patients had trouble complying with the rule. During the first few days of the lockdown, patients were held up in roadblocks or even not allowed to reach the treatment centre. Working together with other colleagues and organisations, we advocated for an exception of the travel ban for cancer patients. Thankfully, in a matter of days, the government granted exceptions for sick patients.

 Lastly, we still also felt that we had to do our bit for our frontline colleagues who faced at the time a shortage of Personal Protective Equipment (PPE). Working hand in hand with our supporters and friends, NCSM initiated the purchase and delivery of needed PPEs to various public sector health institutions.

What is clear for all of us is that while cancer CSOs may not be on the frontline per se, it is critical for us to continue to function and even increase our activities to ensure that cancer care is maintained. Not only would we otherwise be putting patients at risk, but also our health systems would be swamped after the pandemic response by cancer patients presenting even more severe conditions. 

We need to be on the frontline in order to ‘hold up our end of the line’.