Around the world, the prevalence of diseases is substantially higher for the 1.3 billion people (16 percent of the population) with disabilities. For example, among adults with disabilities living in the United States, 10.4 percent have heart disease, compared with 3.7 percent of those without a disability. The disparity in communicable diseases is similarly stark; globally, adults with disabilities are twice as likely to have HIV/AIDS, and children in sub-Saharan Africa with a disability are more likely to experience acute respiratory infections, diarrhea, and fever.
The aggregate effect of these health inequities on human life is shocking: globally, people with disabilities have a mortality rate that is 2.24 times higher than those without disabilities, with a mean life expectancy 13.8 years shorter.
Although people with disabilities often have greater healthcare needs, they also experience more and higher barriers to care, often rooted in failures through the health system. For example, people with disabilities are 2.5 times more likely to report skipping or delaying care because of cost. Additionally, they are more than twice as likely to have difficulty securing transportation to a health facility, and when they do arrive, they often encounter inaccessible facilities or healthcare workers with inadequate skills or flexibility to provide quality care. Moreover, people with disabilities are 2.5 times more likely to not receive care because it is unaffordable. Finally, weak laws and policies against discrimination, limited representation of persons with disabilities in health sector decision making, and poor data and evidence pose additional barriers to receiving holistic and accessible care.
The McKinsey Health Institute (MHI) is working with the Missing Billion Initiative to address health system challenges and close gaps in health equity (see sidebar, “About the Missing Billion Initiative and the McKinsey Health Institute”). In 2022, the Missing Billion put forward a framework for disability-inclusive health systems with examples of actions and good practices that stakeholders could implement across health systems. In 2023, the Missing Billion and MHI explored how a data equity gap limits the ability of health systems to meet the needs of people with disabilities and outlined actions stakeholders could take with respect to data collection and usage.
While efforts to remove systemwide barriers must increase, it is also important to identify and address specific challenges faced by people with disabilities along the patient care pathways of specific health conditions.
This article examines inequities at each stage of the patient care pathway for people with disabilities, using examples of a noncommunicable disease and a communicable disease. It offers two personas, a patient with cervical cancer and a patient with HIV, to provide insights into disease-specific inequities and potential interventions to overcome them. Finally, it offers a three-step approach to reduce health inequities across disease types as well as an approach to analyzing care pathways to inform national disease program designs.
Analyzing patient care pathways reveals the stark compounding effects of disability-related barriers to quality healthcare that patients experience at every step and identifies opportunities to implement changes (Exhibit 1).
Exploring inequities in patients with cervical cancer
The care pathway for cervical cancer illustrates both the barriers that women with disabilities face related to sexual and reproductive health and the barriers that people with disabilities often face in cancer care (Exhibit 2).
Prevention, screening, and diagnosis. Parents of children with disabilities may assume people with disabilities are asexual or not sexually active, which could impede care quality. For example, the human papillomavirus (HPV) vaccination has proven highly effective at reducing the incidence of advanced-state disease, but vaccination uptake is substantially lower in schools specifically serving students with disabilities than in mainstream schools.
Likewise, cancer research organizations recommend a highly effective screening for cervical cancer every five years for women aged 25 through 65. Yet a meta-analysis of 22 studies showed that women with disabilities are 35 percent less likely to be screened for cervical cancer.
Treatment and follow-up care. Cervical cancer patients with disabilities are less likely to receive treatment, including chemotherapy and surgery, for a variety of reasons. Clinicians may limit treatments with high toxicity for people with worse baseline health, or they may lack awareness or exhibit bias when treating patients with disabilities. Additionally, cancer is detected at later stages, on average, for people with disabilities, and hospital rooms and equipment may be inaccessible.
Furthermore, when developing treatment plans for various cancer types, physicians often use standardized scales (for example, the Karnofsky Performance Scale) to assess patients’ ability to tolerate cancer treatment; however, these scales are not designed with disabilities in mind—which some physicians are publicly criticizing as a problem—resulting in the following challenges:
- Certain impairments (such as mobility) artificially sway results to underestimate patients’ ability to withstand chemotherapy treatment, resulting in a lower likelihood chemotherapy will be suggested.
- Language such as “requires occasional assistance” or “disabled” may lower the chances of being deemed a good candidate for more-aggressive care plans for people with a wide variety of impairments.
The bottom line: as a result of combined health inequities, women with disabilities who are diagnosed with cervical cancer are half as likely to complete a successful cervical cancer patient journey (Exhibit 3). This leads to a mortality risk that is 1.4 times higher for people with disabilities and a mortality risk that is 1.7 times higher for people with severe disabilities.
Examining health inequities in patients with HIV
Despite established health interventions, HIV is a chronic, infectious disease that leads to nearly one million deaths each year globally from AIDS.
Social stigma remains a substantial barrier for patients in general to seek care, increasing their risk of contracting the disease and developing secondary disabilities. For people with disabilities, the risks are compounded (Exhibit 4). Because of abuse risks and correlation between poverty, exclusion, and disability, people with disabilities are often at higher risk for contracting HIV. An estimated two-thirds of those with HIV have a mental health disorder, compared with 31 percent of persons without HIV. The World Health Organization’s recommendations to ensure access to HIV treatment for those with mental health, neurological, and substance use conditions lists a wide range of interventions, including helping health and HIV service providers have more knowledge and skills to identify, screen, and manage mental health conditions; and giving those with mental health conditions access and referrals to HIV prevention, testing, and treatment.
Preventive care and prevention. Awareness of preventive methods—for example, clean-needle sharing, use of contraception, and pre-exposure prophylaxis medication—reduces the risk of contracting HIV before or after exposure. People with disabilities, however, typically have lower access to healthcare and less autonomy. At a global level, according to the United Nations, they are more vulnerable to sexual assault or abuse, are less likely to be enrolled in school and receive sexual or reproductive health education, and are often assumed to not be sexually active. Collectively, this puts those with disabilities at higher risk for HIV and AIDS.
Testing and diagnosis. Testing at least once a year is recommended for individuals with certain risk factors for HIV. Because of a lack of awareness, people with disabilities are less likely to know where to go for testing or to have been tested before. Economic vulnerability, physical limitations, and stigma further impede patients from seeking testing.
Treatment. Antiretroviral therapy using a combination of daily medicines is a standard treatment for patients with HIV. Difficulty gaining access to information about HIV and traveling to treatment centers, combined with social stigma, often result in patients with disabilities delaying medication refills and checkups.
Monitoring and ongoing care. The chronic nature of HIV forces patients to experience fluctuating episodes of illness, wellness, and disability, which requires varying levels of care, adding a layer of complexity to the care of people with disabilities. Service delivery models for disability-related issues are either limited or nonexistent in many low- and middle-income countries, where the prevalence of HIV is highest but resources are less available.
A call to action
Healthcare stakeholders can take specific actions to reduce or eliminate health inequities across disease areas.
Analyze care pathways as part of the design phase to identify specific barriers. Government entities, funders, and implementers of disease programs can adopt a structured approach to identifying gaps and intended outcomes at each stage of care through available quantitative data and new qualitative data gathered through consultations with experts and people with lived experiences.
They can also understand the specific barriers facing people with disabilities throughout the care journey. Healthcare worker training programs can be designed with a multi-lens approach toward general disability awareness and knowledge of pathways for specific diseases. It is essential that healthcare workers feel empowered to provide high-quality consultations and care for people with impairments, with nuanced understanding of disabilities and their impact on care pathways.
Additionally, stakeholders can ensure healthcare facilities and equipment are accessible and can provide access to assistive technologies, rehabilitation, and mental health and social support services.
Education, raising awareness, and tackling stigma are likely to be important levers for improving uptake of services. HIV programs also are more likely to need to account for secondary impairments that could create barriers to completing treatment. (See sidebar, “Three steps for developing an insightful, equitable care pathway.”)
Enable system-level changes as foundations for inclusive care pathways. Governments can make system-level changes to healthcare that set the foundation for tailored, inclusive programs by, for example, including people with disabilities in national health sector plans and national disease plans.
Consider care pathways as an important tool for targeted advocacy. Civil societies and patient advocacy groups for specific disease programs can use care pathways to build a holistic picture of compounding inequities and gaps at every stage for people with disabilities. This can enable effective convening of relevant stakeholders and efficient use of available resources to close the equity gap.
