The coronavirus pandemic has shed a new light on the gaps, fragilities and inequalities in healthcare systems around the world. In this new article voicing the experiences of UICC members amidst COVID-19, Salomé Meyer of the Cancer Alliance in South Africa, Udie Soko of the Zambian Cancer Society and Benda Kithaka of Women4Cancer in Kenya, share the difficulties they face as volunteer organisations in providing care and support - and how these have become even harder to address with the pandemic.
Volunteers working at cancer organisations are themselves impacted by confinement measures and the economic as well as public health fallout from the coronavirus pandemic. This reduces the resources of cancer organisations heavily reliant on volunteers to continue their services. Furthermore, volunteers are often themselves cancer survivors and therefore must refrain from activities that expose them and others to contagion.
Community outreach for awareness and early detection services, as well as patient navigation at treatment centres and palliative services, have been curtailed or put on hold. Fundraising activities have been suspended and donations have dried up. And while authorities allow essential cancer treatments to continue – indeed, in Kenya the government has included routine immunisation, including HPV vaccines, as essential treatment – and while cancer patients may travel to receive them, this is not always easy in practice.
Salomé Meyer is a member of the Executive Committee of the Cancer Alliance in South Africa and the Project Manager for the Access to Medicines Campaign. It addresses the high cost or unavailability of several essential cancer medications and the fact that the 84% of patients who are treated in the public sector often see their access to these medicines blocked. As a result of this campaign, Cancer Alliance’s advocacy efforts are being heard by the government, with access to medicines now placed in the national cancer plan. The pandemic, however, threatens to curtail effective access to essential medicines for cancer patients.
In Kenya, Benda Kithaka, Cofounder and Chair of Women4Cancer, pointed to the problem of redeployment of health workers to the coronavirus response. “They are doubling their workload since they continue to respond to other diseases, not only cancer but also hypertension, diabetes and cardiovascular problems that are potential risk factors for COVID-19,” she said. Cancer patients are seeing their access to care restricted.
Another major concern for Women4Cancer is the ability to pursue its primary focus of eliminating cervical cancer through HPV vaccination and early screening, as much of this is done through community outreach. A medical camp in normal times can screen up to 200 women in a day – but with social distancing guidelines, no more than 15 people can gather at a time, which is already less than the required staff.
“Cervical cancer claims nine lives every day in Kenya. I am afraid these numbers now will only go up,” said Ms Kithaka.
Salomé Meyer also evoked coronavirus-related disruptions in South Africa. “We had to find accommodations for a patient with advanced metastatic cancer who was in palliative care but had been discharged from the hospital as it made space for coronavirus cases.” The patient's family could not manage palliative care and she was ultimately found a place in a small hospital.
The Cancer Alliance engaged with the South African Ministry of Health on how to deal with cancer amidst the pandemic with a letter endorsed for the first time by the clinical community. In Kenya, authorities have been responsive in addressing and testing for COVID-19, relying on the solid experience of the Kenya Medical Research Institute (KEMRI), and providing a reassuring and positive voice while communities have come together and largely accepted the imposed measures.
The constant flow of information on the coronavirus pandemic, however, has monopolised the communication channels for health messaging. Consequences include difficulties in travelling to receive treatment, in informing and advising patients on the necessity to pursue treatment and in reaching out to communities more generally on cancer prevention and diagnosis.
Salomé Meyer talked about patients unable to go for scheduled appointments as travel in South Africa was monitored by the police and the army, who were not always informed on their rights and need to travel. Ms Meyer also shared the harrowing experience of a woman at a shop forced to wait in line and exposed to additional risks and fatigue because her condition as a cancer patient was not seen as a priority.
The ability to do effective advocacy work is also compromised, further compounding problems of communication and lack of information. Reduced mobility and social distancing means that it is no longer possible to walk into a legislative office or do face-to-face lobbying. “Technology has been touted as a solution,” said Ms Kithaka, “but rural areas are not nearly so well enabled as urban centers."
Navigation to the appropriate treatment (as well as help in overcoming any barriers that prevent patients from accessing treatment), information on networks for complementary and supplementary diagnosis and treatment (such as blood transfusions for late-stage cancer), linking patients with the hospital insurance funds to ensure payment, advising patients on alternative accommodations outside cramped hospital settings, are all services that have been disrupted.
Udie Soko, Founder and Executive Director of the Zambian Cancer Society, spoke for her part about some patients’ reluctance to seek care despite the fact that essential treatment was still being given and that travel is allowed (though transportation costs are rising). As for the disruption to the organisation’s work and the impact on patients, the Zambian Cancer Society employed a Patient Navigation Officer at the hospital in Lusaka who disseminated information, provided counselling services, arranged for patient visitation and helped with appointment management. “Now that service has been suspended to help protect the Officer from the pandemic, we are not even sure we will be able to hire someone later due to lack of funds.”
Volunteer organisations especially rely on crowdsourcing and community-based events to raise money and these have been impossible to hold in current circumstances – and probably for the foreseeable future. Corporate sponsoring and individual donations have also dried up as the impact of the pandemic on the economy is being felt financially by everyone.
The coronavirus further diverts funds, as Benda Kithaka explains. “As an NGO, we rely on goodwill from well-wishers and Corporate CSR Budgets through organised CSR Activities. Even then, we used to have to compete with other organisations doing similar fundraising events for scarce resources, including organisations dealing with other disease areas such as HIV/AIDS. But then we found ways to coordinate and piggyback on each other’s efforts and do comprehensive, integrated medical outreach. Now, with reduced capacity to congregate as a group, we cannot coordinate this.”
Over and above this, the organisation has often relied on volunteers to coordinate these fundraising events, but with the capacity for volunteers limited by travel bans and the ability to congregate, Women4Cancer faces additional challenges to raising funds and sustaining certain programmes.
The Zambia Cancer Society has used some of its available funds to obtain protective equipment for medical personnel at the Cancer Diseases Hospital, cancer patients and their caregivers. For the most vulnerable patients, it has also purchased contrast imaging dye that is critical in determining the extent of the disease and ensuring that appropriate management measures are implemented (the hospital will waive the cost of a scan if patients can supply the dye). Whilst the Zambian Cancer Society can currently cover its basic overheads, it is now operating on the worst-case scenario that no significant monies will arrive this year to help patients as it usually does.
Udie Soko said that she has been thinking constantly for ways to raise revenue independently of donations. But for a non-profit volunteer organisation that operates on providing free services not having them paid for, this is a “difficult nut to crack.”
For decades, cancer has not been regarded as a priority disease in Africa, according to Salomé Meyer, as the focus has been on HIV/AIDS, malaria and tuberculosis. Yet the prevalence of cancer is growing, as sub-saharan Africa has recorded a 45% increase in related deaths since 2000 – the disease now kills more than half a million people each year. The risk is high that coronavirus will further close funding sources for cancer – either at the government level or from the donor community – forcing many cancer organisations to close.
Udie Soko, Benda Kithaka and Salomé Meyer all agree that the pandemic should encourage a greater concentration of forces within civil society to enhance collective action, and may reshape the way the cancer community mobilises to speak with a stronger voice. It could be an opportunity reinforce networks within the community and with other NGOs, UN agencies and the government, and build an even greater capacity to respond to the coronavirus and similar challenges.