key: cord-0881586-x49rd0to authors: Munisamy, Murallitharan; Ndoh, Kingsley; Abdelbadee, Ahmed; Espejo, Isthar; Manjuh, Florence; Tamas, Alexandra; Salako, Omolola; Roitberg, Felipe title: Adapting Cancer Civil Society Organizations to Accelerate COVID-19 Vaccinations in People Living With Cancer in Low- and Middle-Income Countries—A Commentary date: 2021-07-22 journal: JCO Glob Oncol DOI: 10.1200/go.21.00195 sha: a26863428aa73fb82d2c09e479b3ee0bf107490c doc_id: 881586 cord_uid: x49rd0to nan More than a year since the onset of the SARS-COV-2 viral pandemic, the situation continues to be serious, with the latest data recording more than 160 million confirmed cases and almost 3.4 million deaths worldwide. 1 New waves of infection have emerged even in countries that looked to have brought their conditions under control, and in many countries, the outbreak continues unabated. 1 Reining in the pandemic and bringing it to an end will require multifaceted, multistakeholder approaches including public health risk-mitigation measures, community education and empowerment strategies, and successful development and deployment of vaccination programs worldwide. 2 Through a combination of global cooperation and innovation, the scientific community has managed to develop multiple vaccine candidates against SARS-COV-2. 3 Some of these have successfully completed phase III trials, received emergency authorization, and are already being used in multiple nations to reduce the spread of the pandemic. 3 Unfortunately, the development of safe and effective vaccines is only part of a comprehensive vaccination solution. 4 Challenges in vaccinating a country's entire population include the speed in which the vaccines can be manufactured and transported to wherever they are needed; the successful organization and management of vaccine delivery programs on the ground; and how well vaccines are accepted by potential recipients. 4 People living with cancer (PLWC) have been severely affected during this pandemic. Not only are PLWCs at higher risk of contracting COVID-19 infections, but they are also more susceptible to complications when infected with the disease. 5 Additionally, the pandemic has also caused a detrimental impact on cancer care services for PLWCs, with delays and disruptions tied to poorer outcomes. 6 For example, recent data projected that because of the pandemic, clinicians in Europe saw 1.5 million fewer patients with cancer over the past year, with an estimated one in five PLWCs in Europe not receiving the care they needed. 7 Cancer civil society organizations (CCSOs) have also been faced with numerous challenges connected to the pandemic, which have affected their ability to support PLWCs. 6, 8, 9 Many of them have adapted innovative solutions and new approaches to continue providing much-needed services, while quite a few have also taken on completely new roles to cater to the evolving needs of the PLWC communities they serve in the pandemic. [8] [9] [10] As vaccination programs begin to be rolled out across different low-and middle-income countries (LMICs), questions arise on whether CCSOs should take on new roles to support COVID-19 vaccination programs. This is especially relevant since successful rollout of vaccination has been suggested to be one of the ways to get cancer care back on track. 11 This commentary explores issues around potential roles CCSOs should play in COVID-19 vaccination programs in LMICs. There are some significant challenges in advancing vaccination efforts globally. 3 Chief among these is vaccine hesitancy. 12 The multifaceted determinants of vaccine hesitancy (as depicted in Figure 1 ) can be divided into (1) confidence in the efficacy and safety of the vaccines as well as the system tasked with the process of vaccination; (2) complacency-in which individuals are not motivated to be vaccinated if the perceived risk of the specific disease is low; and (3) convenience-in which the ease (or difficulty) of obtaining the vaccine affects the decision to get vaccinated. 13 Numerous studies have documented the continuing lack of confidence in the safety and efficacy of COVID-19 vaccines among the public, including PLWCs. 14 Author affiliations and support information (if applicable) appear at the end of this article. This has been attributed mainly to a paucity of contextspecific communications to relevant communities and active disinformation campaigns from antivaccine and pseudoscience groups. 14, 15 CCSOs, as trusted institutions among PLWCs, can use their trusted reputation and social capital to aid in confidence-building and acceptance in vaccines among the communities they work in. One way they could support PLWCs is to help them understand their relative risk. For example, in the United States, a part of the initial fear of taking the Pfizer-BioNTech vaccine a few weeks after its approval and use was attributed to reported cases of Bell's palsy. 16 CCSOs can play an active role in helping PLWCs to simplify and distil the plethora of news and studies, which can be one of the ways to boost confidence in vaccines. 17 PLWCs as well as health care workers working in cancer care may also be complacent toward COVID-19 vaccinations, with the unfounded perception by some of being at lower risk to contract the disease, while others may feel that vaccination is futile because of the complex emotional stresses and mental health issues they face currently. 14, 18 CCSOs, especially those working within the psychosocial landscape, can assist in identifying individuals with vaccine complacency as well as those with mental health issues, which may be affecting vaccine acceptance, and carry out individual or group-level interventions as and when required for this purpose. Vaccination programs will most likely need to be carried out via multiple modalities, with modifications to take into account varying geographical locations, local context, and even specific cultural mindsets. 3, 15, 18 PLWCs are diverse and heterogeneous, with individuals living with different cancers as well as being in different stages of survivorships on different treatment regimens. 19 Additionally, the clinical trials that led to the approval of a number of the vaccines did not include enough patients with cancer on active treatment to generate ample evidence for patients with cancer vis-à-vis the state of their immune cells. This has led to diverse recommendations and, in some instances, confusion among patients with cancer on whether or not to vaccinate against COVID-19. 20, 21 Large-scale mass vaccination programs may find it challenging to assess and manage these individual needs of PLWCs. CCSOs, by contrast, may be better suited to bridge this gap between health authorities, oncologists, and the patients themselves to facilitate vaccinations among PLWCs. PLWCs have been indicated as an at-risk group who need to be prioritized for vaccinations. 22 In the tussle between vaccine supply and the race for vaccination even within each country, concerns abound on equitable distribution of vaccines. 23 CCSOs are institutional advocates for PLWCs and can raise concerns to key stakeholders as well as play an oversight role over distributions to ensure PLWCs are indeed prioritized and provided with access to vaccines in a timely manner. CCSOs are well positioned to be able to address ethnic, sex, economic, geographic, and cultural diversities of the communities they work with and can use their institutional knowledge and social capital to triage and prioritize PLWCs within these communities for vaccination. 24 Some of the strategies in which CCSOs can play an active role in COVID-19 vaccination programs include the following. CCSOs providing clinical services would already have suitable infrastructure and resources for registering, administering, and subsequently risk-assessing and observing PLWCs for unintended postvaccination events. CCSOs can be contracted by specific governments or international organizations to act as vaccination centers specifically for PLWCs and will also confer additional benefits by acting to decrease the load on clinical systems already managing active COVID-19 infections as well as being low-risk centers, which are a safer avenue for PLWCs at risk for COVID-19 infections. In specific instances, CCSOs can also establish and carry out mobile vaccination camps to reach vulnerable PLWCs or those in geographically inaccessible regions. Integrating the care of communicable and noncommunicable diseases (NCDs) has been successfully carried out in Malawi, for example, where integrated HIV and NCD care was provided. 26 CCSOs Acting to Support Governments in Purchasing and Distributing COVID-19 Vaccines for PLWCs. In LMICs with fragile overburdened health systems, CCSOs may be able to support governments in purchase and distribution of COVID-19 vaccines, specifically for PLWCs. This could be done working together with larger global partners and prove to be a manner in which vaccines can be provided to PLWCs, who are a high-priority group to be vaccinated. In countries such as India and Tanzania, civil society organizations have played an important part in providing access to essential medicines, and also acted to exercise wider market influence by controlling competition and prices. 27 CCSOs Advocating for Equitable Vaccine Access for COVID-19 Vaccines for PLWCs. In LMICs, CCSOs can act as advocates to governments and other key stakeholders to ensure that PLWCs are prioritized in terms of vaccine access. CCSOs are perfectly positioned for this role since most already are in strong social partnerships with key public health stakeholders within their national settings. Additionally, CCSOs can act as public oversight bodies to ensure that the rollout of vaccines is being carried out in a systematic, transparent manner. CCSOs have successfully advocated for governments and other stakeholders to provide equitable access to medicines in various other disease settings, including in HIV. 28 CCSOs Providing Vaccine-Specific Health Education and Health Promotion. CCSOs can play an important part in building the confidence of PLWCs as well as their families and carers to COVID-19 vaccines. Most CCSOs already have strong scientific reputations and good working relationships with experts, as well as the implicit trust of their communities. CCSOs can act to bridge the gap between the evidence of COVID-19 vaccines and PLWCs who are grappling with these abstract scientific concepts via innovative and effective communication approaches. These may include simplifying vaccine and side-effect data using social media or even celebrities to increase vaccine confidence and utilizing of existing channels used for dissemination of cancer information to include vaccine health education and health promotion. CCSOs that are already in many instances actively involved in debunking cancer misinformation and pseudoscience should also extend these capabilities to counterbalance vaccine myths and the narrative of antivaxxers. One successful example of CCSOs acting to drive vaccine-specific health education and health promotion was during the promotion of HPV vaccination in Europe. 29 In specific communities, CCSOs can also work with community cultural or religious leaders to identify possible beliefs that may hinder vaccine uptake by vulnerable populations and work to address them. 30 The success of COVID-19 vaccination programs is one of the key checkpoints for ending the pandemic and, through this, provide a clear path to put cancer care back on track. 2 CCSOs can and should play a role in vaccination programs in their own communities, especially in LMICs with fragile health systems that are severely under strain fighting the COVID-19 pandemic. Weekly Operational Updates on COVID Future scenarios for the COVID-19 pandemic COVID-19 vaccines: Where we stand and challenges ahead Clinical outcomes of a COVID-19 vaccine: Implementation over efficacy: Study examines how definitions and thresholds of vaccine efficacy, coupled with different levels of implementation effectiveness and background epidemic severity, translate into outcomes Effect of cancer on clinical outcomes of patients with COVID-19: A meta-analysis of patient data Delays and disruptions in cancer health care due to COVID-19 pandemic: Systematic review European Cancer Organisation: Covid 19 & Cancer Data Intelligence Organisations for patients with cancer feel the brunt of COVID-19 pandemic World Pancreatic Cancer Coalition, Lymphoma Coalition, World Bladder Cancer Patient Coalition, ABC Global Alliance. The Impact of COVID-19 on Cancer Patient Organisations Impact of strategies for mitigating delays and disruptions in cancer care due to COVID-19: Systematic review How COVID-19 vaccines could help put cancer care back on track. in Union for International Cancer Control (UICC) Blog Vaccine hesitancy: Definition, scope and determinants The SAGE Vaccine Hesitancy Working Group: Report of the SAGE Working Group on Vaccine Hesitancy COVID-19 vaccine hesitancy worldwide: A concise systematic review of vaccine acceptance rates Attitudes toward a potential SARS-CoV-2 vaccine: A survey of US adults Bell's Palsy after second dose of Pfizer COVID-19 vaccination in a patient with history of recurrent Bell's palsy Considering emotion in COVID-19 vaccine communication: Addressing vaccine hesitancy and fostering vaccine confidence Cancer survivorship COVID-19 vaccine guidance for patients with cancer participating in oncology clinical trials The Advisory Committee on Immunization Practices' interim recommendation for allocating initial supplies of COVID-19 vaccine-United States The equitable distribution of COVID-19 therapeutics and vaccines A study of ethnic, gender and educational differences in attitudes toward COVID-19 vaccines in Israel-Implications for vaccination implementation policies Social determinants of infectious diseases in South Asia You can treat my HIV-but can you treat my blood pressure? Availability of integrated HIV and non-communicable disease care in northern Malawi Can NGOs regulate medicines markets? Social enterprise in wholesaling, and access to essential medicines Civil Society and Health: Contributions and Potential. World Health Organization Civil society: A critical new advocate for vaccination in Europe Intention to vaccinate against the novel 2019 coronavirus disease: The role of health locus of control and religiosity The authors would like to acknowledge the Union of International Cancer Control (UICC) for their invaluable assistance in supporting the Young Leaders program and in the production of this paper.