(Photo by iStock/chee gin tan) 

One billion people—15 percent of the world’s population—have a disability. Yet, a dearth of research and resources has cloaked the problem and compounded the disadvantages they face.

The Missing Billion initiative aims to end the health-care gap for disabled people by 2030—part of the United Nations’ Sustainable Development Goal 3 to “ensure healthy lives and promote well-being for all at all ages.” The project “arose from our recognition of the fundamental neglect of disabled people in global health care,” explains cofounder Hannah Kuper, an epidemiologist and director of the International Centre for Evidence in Disability at the London School of Hygiene & Tropical Medicine (LSHTM).

The inspiration for the initiative came from The Missing Billion Report, a 2019 study which Kuper coauthored with Phyllis Heydt, director at the Office of the World Health Organization (WHO) Ambassador for Global Strategy, with support from a steering committee of individuals from UNICEF, Special Olympics, UN Partnership to Promote the Rights of Persons with Disabilities, and other institutions. In addition to detailing the challenges that disabled people face in accessing and receiving health care, the report offers recommendations for governments to remove barriers to health services and ensure access to assistive technologies and rehabilitation services. 

The document includes a vast amount of data on the state of health care and health-care access in the global disabled community. “Disabled people are three times as likely to be denied health care and four times more likely to be treated badly—including discrimination and abuse—by the health-care system,” the report states. “They are 50 percent more likely to suffer a catastrophic health crisis or cost and between two and four times as likely to have a chronic illness necessitating constant maintenance, like HIV/AIDS or diabetes. And disabled people are twice as likely to die from lack of the most basic care as non-disabled people.”

A year after the report’s publication, Heydt and Kuper partnered with Mari Tikkanen, cofounder of the social innovation company Scope Impact, and Ola Abu Alghaib, policy and rights manager at the UN Partnership for the Rights of Persons with Disabilities, to establish the Missing Billion initiative. The effort seeks to transform health systems worldwide by 2030, setting the goal of 20 national governments making their health plans fully accessible and inclusive for disabled people, as well as ensuring that all health-care actors, investors, and funders approach their work through a disability lens that centers this marginalized community. 

In order to implement this disability lens, the initiative is working with disabled people to identify gaps, build evidence, and compile best practices to “cocreate new services and delivery models through an innovation accelerator as well as campaigning and mobilizing funds for this critical work,” Tikkanen says. The accelerator focuses on global mapping, capacity building, and scaling design to yield solutions.

The initiative aims to address the gaps in health access and care through its diagnostic and improvement tool kit specifically designed for government ministries and departments of health around the world to scale and prioritize interventions to increase health-care access. The tool kit, Heydt explains, “includes a health system framework and indicators that can be applied to assess and measure a country’s situation with regards to access to health care for people with disabilities, with a plan to build out best practices for each part of the health system framework that can then be used by governments to derive improvement strategies.” 

This year, the tool kit is being tested in what Heydt calls a “soft-piloting” of the initiative to assess the existing indicators of health-care service demands (accessibility and affordability) and supply (facilities and services). The testing is taking place “with LSHTM’s research partners in Brazil, the Maldives, and South Africa,” Heydt says.

For Tikkanen, the initiative is personal: “Witnessing health services continuously fail my disabled daughter and learning about the systemic neglect of the health needs of 15 percent of our global population led me to Phyllis, Hannah, and Ola and to cofounding the initiative.”

Currently, the cofounders are fully self-funding the initiative, but they are actively seeking investment through their personal connections and networks.

“This is more of a journey than a destination,” Kuper says. “We will never feel that we have reached the end point of inclusion, but we will constantly seek to do better.”

Read more stories by Victoria A. Brownworth.