The 79th World Health Assembly in 2026 became a battleground not just for policy, but for principle. As world leaders convened in Geneva, a quiet but resolute voice cut through the noise: Pearl Lüthy, a Special Olympics Switzerland athlete and World Winter Games Switzerland 2029 Athlete Ambassador, reminded the room that “nothing about us without us” is not a slogan—it’s a demand. For those who live at the margins of global health systems, inclusion isn’t a perk; it’s a right. Yet, as the assembly debated vaccines, pandemics and health equity, the deeper question remained unasked: Who gets to define “equity” in the first place?
The Origins of a Movement
The phrase “nothing about us without us” traces its roots to the 1990s disability rights movement, where activists rejected the paternalism of policymakers who crafted laws without consulting the people they claimed to serve. By the 2000s, the mantra had seeped into global health, particularly after the UN Convention on the Rights of Persons with Disabilities (CRPD) was adopted in 2006. Yet, as Lüthy’s presence at the WHO Assembly underscored, the gap between rhetoric and reality remains wide. WHO data from 2025 reveals that 80% of people with disabilities in low-income countries lack access to basic health services—a statistic that has changed little since 2010.
The 2026 assembly marked a turning point. For the first time, a formal resolution was introduced by the European Union, mandating that all future WHO initiatives include representatives from marginalized communities in their design. But as Dr. Amina Jallow, a Senegalese public health economist, noted in a 2025 Lancet analysis, “The challenge isn’t just inclusion—it’s power. Too often, consultative bodies are rubber stamps, not decision-makers.”
Data and Disparities
Consider the case of Kenya, where a 2024 study by the African Population and Health Research Center found that people with intellectual disabilities were three times more likely to experience maternal mortality than their neurotypical peers. The root cause? Health workers lacked training to accommodate their needs, and data collection systems failed to track their outcomes. “We’re not invisible,” said Lüthy, who has spoken publicly about her own struggles with accessibility in sports medicine. “We’re just not counted.”
This data gap isn’t confined to disability. UNICEF reports from 2026 highlight similar patterns for LGBTQ+ communities, where 60% of transgender individuals in Southeast Asia avoid health care due to fear of discrimination. The WHO’s 2025 Global Health Security Index, which evaluates countries’ preparedness for pandemics, also omitted specific metrics for marginalized groups—a omission that critics argue left entire populations vulnerable.
Voice from the Field
“Inclusive health isn’t about charity,” said Dr. Elena Torres, a Mexican epidemiologist and founder of the Global Health Equity Collective. “It’s about recognizing that the people most affected by health crises are also the ones with the best solutions.” Torres pointed to a 2023 pilot program in Colombia, where community health workers from indigenous groups led malaria prevention efforts. The result? A 40% reduction in cases in six months—a success that traditional top-down approaches had failed to achieve.
“When we exclude people from the conversation, we don’t just deny them dignity—we weaken the entire system,” said Dr. Torres. “Health is a human right, but rights mean nothing without representation.”
This philosophy is gaining traction. In 2026, the WHO announced a new framework for “participatory health governance,” requiring member states to include civil society representatives in national health planning. Yet, as Lüthy noted during a side event, “The real test isn’t in the policy—it’s in the implementation.”
A Global Imperative
The stakes couldn’t be higher. Climate change, pandemics, and aging populations are converging to create a perfect storm for health inequity. By 2030, the World Bank projects that 100 million more people could fall into extreme poverty due to health-related costs—a crisis that will disproportionately impact marginalized groups. “Inclusive health isn’t just moral,” said Dr. Jallow. “It’s economic. Excluding people from care doesn’t save money; it costs it.”
The 2026 assembly’s resolution was a step forward, but as Lüthy’s presence reminded the world, the work is far from done. For every policy adopted, there are countless stories of people who still
