Kenji is improving the quality of life of cancer patients and survivors in Mexico by making the health care system more responsive to their needs. Starting with a pioneering occupational leave system for parents of children with cancer, he is building the institutional infrastructure and accountability to address gaps that generate economic vulnerability, exclusion, and reduced life expectancy for patients with care-intensive illnesses.
Die neue Idee
Kenji is using the legal system to ensure that the rights of cancer patients and survivors do not remain on paper. His organization, Cancer Warriors, is promoting innovative uses of the law in the cancer space to enable access to quality health care, bringing together multiple sectors to address gaps, guarantee enforcement, and build accountability. Kenji is also putting the voices of those affected by cancer at the center of policy conversations, not only through advocacy and legal claims, but also by creating spaces to gain decision-making powers.
Other organizations have addressed the high costs of cancer treatment by providing direct financial support, health services, and campaigning for public funding. Yet Kenji noticed that care-intensive illnesses such as cancer affect families’ economic stability more fundamentally by disrupting employment. Through Cancer Warriors, he is creating the legal infrastructure to ensure that receiving treatment does not leave patients and their families vulnerable by de-linking employment status from access to quality, affordable healthcare. For example, Cancer Warriors played a seminal role in creating an occupational leave system in Mexico for parents of kids with cancer who work in the formal economy. This system allows parents to accompany their children during prolonged treatment while maintaining their health insurance and 60% of their salary, thereby protecting the continuity of treatment. Kenji is also working to inform patients, families, and public hospitals about this and other rights, as well as the legal mechanisms available to demand accountability from social security providers and employers.
Using both high-level and grassroots legal strategies, Kenji is tackling the broader institutional factors that exacerbate the economic burden of cancer, such as job loss, fragmentation, continuous cuts to the federal budget that limit the availability and quality of health services, and the stigma that affects survivors’ job prospects even years after recovery. These issues are not unique to Mexico, which is why he plans to scale Cancer Warriors across Latin America and is already building links with organizations throughout the world that can replicate his model.
Conditions that require prolonged hospitalization such as cancer place a significant time burden on patients and, particularly for minors, on their families. Paradoxically, this time demand often hinders access to treatment due to the economic cost it implies. Missing work for long periods during treatment means that patients or their caretakers must take pay cuts and even lose their jobs. In the Mexican context, being fired means losing not only their salary but also their health benefits and insurance, exacerbating families’ economic vulnerability and disrupting the continuity of care.
Mexico’s public health system is made up of distinct sub-systems with different levels of care, aimed at different groups, at different prices, with different outcomes. Critically, affiliation to a sub-system is determined by employment status rather than need. This means that persons with private salaried jobs – and their families – have access to one set of benefits and providers through contributory social security. If they become unemployed, they would have to enroll in publicly-subsidized insurance that includes different benefits and providers. Indeed, data from the OECD shows that nearly one third of social security affiliates each year are forced to change their provider network due to a change in employment status.
In the case of parents or guardians of children with cancer, for example, Kenji found that they face an impossible choice between losing their job to accompany their child or continuing to work to maintain their health insurance and benefits. The choice is not only emotionally significant; studies have shown that the presence of a parent can directly impact the wellbeing of hospitalized children, to the extent of improving the effectiveness of treatment. Additionally, changing insurance and hospitals due to job loss can complicate treatment, given the disparity in the quality and availability of services – particularly tertiary care.
Contributory social security systems in Mexico are far from perfect. However, switching to publicly-subsidized care means facing even longer waiting times; severe shortages in medicines, doctors, and other basic medical resources; limited services, and lower-quality care. Some areas of the country even lack physical health infrastructure and personnel, which entails travelling long distances to receive treatment. These structural problems are exacerbated for illnesses that require hospitalization and specialized services. Marked differences in accessibility and quality between sub-systems not only affects health outcomes, but also further entrenches socioeconomic inequality.
Fragmentation in the health system is exacerbated by low public spending and investment. According to the Pan American Health Organization, Mexico spent 2.5% of GDP on health in 2020, considerably below the 6.0% minimum recommended. Limited overall investment in health has resulted in serious shortages in key health resources; oncological treatment has been a paradigmatic case. The failure of the current system to provide high quality services is reflected in sustained, high levels of out-of-pocket spending. Despite efforts to achieve universal health coverage, out-of-pocket spending on health care in Mexico is among the highest in the OECD. It accounts for 4.0% of household expenditure, and 45% of health system revenue. Dissatisfaction with access and quality of services to which people are affiliated leads them to turn to private health providers, particularly those with high-risk (and high cost) illnesses. At the same time, the time burden of intensive care creates a vicious cycle whereby pay cuts or job loss make it more difficult to afford adequate care in the first place, leading many to abandon treatment altogether.
Kenji is working to build a health system that is more responsive, efficient, and accountable to cancer patients and survivors, and setting a precedent for other illnesses that require long-term hospitalization. His organization, Cancer Warriors, takes both a top-down and a bottom-up approach to reforming the structures surrounding cancer, focusing on the direct and indirect economic consequences of the illness.
At a top-down level, Kenji is leveraging the law to create an institutional infrastructure that enables access to quality health care for cancer patients, using two main strategies: driving reforms and creating mechanisms to build accountability. Cancer Warriors has been instrumental in positioning job loss, and economic vulnerability in general, as a key issue facing people with cancer. It has been a pioneer among citizen organizations in the cancer space by going beyond advocacy to draft, lobby, and support implementation of reforms.
Their first major win came in 2019, when the Mexican House of Representatives unanimously passed three federal laws proposed by Cancer Warriors. The laws created an unprecedented occupational leave system for parents or guardians of children with cancer who are formally employed, which has the potential to benefit 10,000 families at a national level. This system allows one parent of a child under 16 who is hospitalized, in a critical stage, or in palliative care to take an occupational leave of up to 28 days, with the possibility of extension to 364 days. During their leave, parents receive 60% of their salaries through welfare, as well as access to the health care benefits granted by their employers. This program will prevent parents from falling into the vicious cycle created by the time burden of treatment and increase continuity of care in the context of Mexico’s fragmented health system. To date, the program has already reached more than 5,000 children and resulted in a 70% decrease in treatment abandonment.
Additionally, Kenji is currently attempting to expand such financial assistance to another 13,000 children with cancer whose parents work informally and are thus ineligible for occupational leave. He is also working on a proposal to leverage tax incentives to address discriminatory practices that undermine job security and prospects for adults with cancer. The time burden it implies means that employers are often reluctant to hire cancer patients for fear of a relapse, even years after recovery. This program would establish a reward and penalty system to encourage employers to hire people with cancer and survivors, which would be complemented by awareness-raising in workplaces to shift stigmatizing attitudes.
To ensure that reforms and existing rights are truly executed, Kenji is instituting legal safeguards and cross-sector, multi-disciplinary monitoring bodies that ensure accountability and responsiveness. In the case of the occupational leave program, Cancer Warriors obtained warrants to compel the two main social security institutions to issue the necessary guidelines to grant occupational leave for affiliates. More recently, Kenji has advanced the creation of a surveillance commission within the Mexican government to enforce the rights of women with late-stage cancer. The commission would involve representatives of multiple sectors: health, Congress, the finance ministry, law, academia, civil society organizations and, crucially, women with breast cancer. Its purpose is to reform the Mexican General Health Law to clarify the execution of the rights it provides, prevent further budget cuts, and increase investment towards innovative treatments and better palliative care. Importantly, this would be an independent body to ensure continuity despite changes in administrations. The commission has the potential to foster more and higher quality health services across affiliation sub-systems, reducing the rate of treatment abandonment due to changes in employment status as well as the need for out-of-pocket spending on private care.
On the bottom-up side of things, Kenji employs individual and community level strategies that reinforce implementation of these legal reforms. For example, he empowers patients and their families with information that enables them to navigate the process of obtaining occupational leave. Kenji has handled over 100 cases since June 2019 through the counselling arm of Cancer Warriors, which educates patients and parents on their rights and available legal mechanisms to demand enforcement. To reach more families, the organization also provides advisory and capacity-building to hospitals, doctors, and NGOs so they can inform patients and hold social security providers accountable. Kenji plans to expand his awareness efforts by creating a call center and hosting forums in universities and hospitals nation-wide.
As the surveillance commission shows, moreover, he is mobilizing people with cancer and survivors to actively engage in driving and implementing legal change. By creating platforms for them to participate in high-level decision-making, Kenji is setting the foundations for a people-centered health care system. Increasing patient representation ensures that their interests and needs are consistently accounted for by policymakers beyond isolated campaigning and makes their agency visible. Kenji thereby aims to tackle the stigma and discrimination that cast them as passive victims at best and a burden at worst.
Through partnerships with international organizations, Kenji aims to position Cancer Warriors to serve additional countries in Latin America within the next five years and to support other organizations and institutions that can bring his ideas to global scale. In 2020 he was selected to join the Board of Directors of the Union for International Cancer Control (UICC), as well as the ABC Global Alliance for breast cancer issues. Further, he has joined the Global Alliance for Patient Access to share best practices with actors that promote responsive health policies and patient representation for multiple high-risk illnesses. Cancer Warriors has also been featured on global events and publications as a success case of using the law to promote health access for patients with chronic diseases.
Kenji developed his understanding of social issues through oratorical contests where, as state champion, he had the opportunity to engage with diverse topics from a young age. He carried this interest into his adolescence: as President of his high school’s Student Council, he launched a reading and support program for seniors in public care homes, and he continued this volunteering work at university by leading poetry courses at a nursing home. During his career in public service he was able to create social impact at a higher level through the National Commission for Human Rights and the UN Executive Team at the Secretariat of Foreign Affairs. Even when his core work did not involve social and environmental issues, such as at the Secretariat of Work and Social Provisions and the Executive Cabinet, he sought ways to further his commitment. For example, he initiated a program to address the low rates of awareness and uptake of the range of government social support through a one-stop system.
However, it was his mother’s breast cancer diagnosis in 2013 that galvanized Kenji into fully immersing himself in generating social change. At that point, he decided to “enter the fighting ring with her.” He began to volunteer with organizations focused on the battle against cancer, writing articles about risk factors and preventative measures, and pressuring lawmakers to maintain public budgets focused on cancer research and care. Visiting hospitals during his mother’s illness and through volunteering exposed him to the experience of numerous families dealing with cancer. With extensive experience in public service and a background in corporate law, Kenji’s understanding of political and legal structures allowed him to notice patterns that could be addressed by harnessing key institutions, regulations and mechanisms.
In particular, Kenji’s previous role at the Secretariat of Work and Social Provisions gave him in-depth insight into federal labor laws and the Mexican labor system. After hearing about the plight of parents of children with cancer, he understood how this system could be leveraged to improve access to health and finally decided to launch his own movement — Cancer Warriors.
After losing his mother to cancer, Kenji established Cancer Warriors as a formal organization in 2017 to effect deeper, long-lasting change. Only two years later the Mexican government unanimously passed his reform proposal to create the occupational leave system. This achievement led Change.org to select him as one of five leaders driving the most impactful initiatives worldwide. Beyond Mexico, Kenji has presented the occupational leave system at the Brazilian Senate and has shared his strategies with organizations in Latin America, Africa, Europe, and Asia at international fora such as the World Cancer Leaders’ Summit.