Six years, five months and six days after suffering a stroke that paralyzed her left side, Madeline Niebanck shared her story of recovery at World Health Organization (WHO) headquarters.

Niebanck, 28, spoke to delegates on Monday gathered for a global summit to strengthen financing for and access to rehabilitation care in health systems. She called on governments to use the conference to make investments that can provide what she says people going through rehabilitation need most: “hope”. 

“The past six years have been filled with learning how to adapt and to live a new life,” said Niebanck. “Rehab is not easy. It is hard, and it’s a lifelong journey.” 

Twenty-two at the time of her stroke, Niebanck had just graduated from the University of Georgetown when an arteriovenous malformation – a tangle of abnormal blood vessels – ruptured in her brain, damaging her brainstem. She was rushed into emergency surgery, and doctors told her parents they were not sure she was going to make it.

“The neurosurgeon saved my life that night, but what I realize now is that surviving the brain hemorrhage was not the finish line,” said Niebanck. “It was just the beginning of a very long rehabilitation journey.”

The high-level WHO meeting is the first since a watershed resolution on boosting access to rehabilitation care passed in the World Health Assembly with unanimous support from WHO’s 193 member states in May.

The resolution – the first to directly address rehabilitation in 75 years of the World Health Assembly – found that global rehabilitation needs are “largely unmet”. In many countries, less than half of people receive the care they require. 

The non-binding document commits to expand financing, integrate rehabilitation into national healthcare systems, minimize the prohibitive costs of assistive technologies like hearing aids, promote research and include rehabilitation in emergency preparedness and response plans. 

“The need for rehabilitation is far, far greater than most people assume,” said Dr Jérôme Salomon, Assistant Director-General and head of Universal Health Coverage at WHO. “More than 2.4 billion people, almost a third of the global population, have health conditions that could benefit from rehabilitation.

“[Madeline’s] story reminds us the core of rehabilitation is winning the fight to restore health, functioning and dignity,” said Salomon. “It also underlines that winning this fight is as critical as the fight to survive.”

The number of people requiring rehabilitation has climbed by nearly 70% since 1990, driven by an increase in musculoskeletal disorders like lower back pain, neurological disorders and sensory impairments. 

Leading causes of disability vary from country to country, from hearing loss in China to fractures in Russia, vision loss in India and lower back pain in the United States. 

“The challenge and the tragedy is when rehabilitation services are not available or are not provided,” said Alarcos Cieza, who leads WHO’s vision, hearing, disability, and rehabilitation unit. “In many countries where people don’t receive rehabilitation, people die.”

WHO defines rehabilitation as a range of interventions and technologies designed to help people with disabilities regain their independence. These include assistive technologies such as hearing aids, glasses, wheelchairs and prosthetics, and physical, occupational, and psychological therapies.

“Rehabilitation is about our everyday life, how we communicate, how we move around,” said Cieza. “It’s about sleeping, it’s about breathing, it’s about our relationships – it’s really about our lives.”

Rehabilitation still out of reach for millions

Four decades after the WHO recognized rehabilitation as an essential health service, millions of people still lack access to these  life-altering interventions.

Health systems across the world suffer from significant funding shortfalls, but gaps in access are especially large in low- and middle-income countries. WHO estimates 20 to 40% of health resources are wasted through inefficiencies and corruption. Rehabilitation is especially hard hit by this problem. 

“With the rising prevalence of noncommunicable diseases, ageing populations, and improved survival from injuries, the need for rehabilitation services is expected to increase significantly,” WHO Director-General Dr Tedros Adhanom Ghebreyesus said. “Low investment and awareness persist, driven by pervasive misconceptions that rehabilitation is too costly, or simply unfeasible to deliver in low-resource settings.”

More than one-third of national health expenditure in low- and middle-income countries comes from out-of-pocket expenses, a major source of financial hardship for families. Assistive technologies such as glasses, hearing aids and wheelchairs are particularly expensive, and many low-and middle-income countries do not have any national service for these products. 

Many people cannot access, or choose to forgo, the assistive devices they need because they are too expensive. More than one billion people – one in eight globally – cannot see properly because they cannot afford glasses. 

The high costs of rehabilitation often prevent people from accessing the care they need, which can have serious impacts on their health and well-being. It can also lead to poverty, as families may have to sell assets or take on debt to pay for assistive devices.

“For most people, rehabilitation services, including necessary assistive technologies, are often out-of-pocket expenses that they cannot afford – this is unacceptable,” said Salomon. “Anyone with rehabilitation needs must have access to quality services whenever and wherever they need them without facing financial hardship.” 

Rehabilitation is also badly affected by the ongoing global shortage of healthcare workers, which is projected to hit 10 million by 2030. The staffing crisis is most acute in low- and middle-income countries and the rural, hard-to-reach areas within them. 

Meanwhile, the COVID-19 pandemic accelerated the migration of trained health workers to high-income health systems in search of higher pay, worsening the shortage in the already struggling health systems of poorer countries. 

Progress is progress: WHO pushes ahead 

WHO has significantly increased its technical assistance to countries for rehabilitation services since the Global Rehabilitation 2030 agenda was adopted in 2017. In that time, WHO has provided technical assistance to 37 countries, up from zero when the agenda was adopted. Twenty-five low- and middle-income countries have so far implemented strategic plans on rehabilitation with WHO assistance.

On the first day of the rehabilitation summit on Monday, WHO published two policy guides for governments seeking to improve rehabilitation care. 

The first guide, a package for rehabilitation interventions with contributions from over 700 experts from 90 countries, is to assist countries on the “planning, budgeting and implementing of rehabilitation in their health systems.” 

The second provides guidance on how to ensure that people with disabilities have access to rehabilitation services during disasters and other emergencies – the difficulties of which were brought into sharp focus by COVID-19, the war in Ukraine, and the Turko-Syrian earthquake. 

WHO is expected to launch further technical guidance in the areas of workforce, information systems, financing, and health service delivery over the course of the Global Rehabilitation 2030 conference, which ends on Tuesday.

Image Credits: Marina Raspopova/ Unsplash, CC.