By Wilson Kutamba and Richard Musisi
With an estimated TB incidence of 200 cases per 100,000, Uganda is one of the 30 countries with the highest burden of TB/HIV globally. For the estimated 86,000 people living here who fell ill with TB in 2019, TB treatment coverage reached 65 percent, and the treatment success rate was 72 percent
— both far below the 85 percent national target for 2019. In response, the Government of Uganda mandated the Ministry of Health, through the National Tuberculosis and Leprosy Programme (NTLP), to bring the disease under control by means of providing high-quality prevention, diagnosis, and treatment services to affected Ugandans.
Although the NTLP and other stakeholders appear dedicated to the effort to bring high quality TB and HIV services to all affected Ugandans, people with disabilities are too often left behind by such initiatives. There is a need to take bold action at national, regional, and district levels to prioritize people with disabilities and ensure they equitably benefit from all TB and HIV interventions.
The Association of Persons with Disabilities living with HIV (ADPHA Uganda, formerly known as Masaka Association of Persons with Disabilities living with HIV and AIDS) is a community-based civil society organization that advocates for the rights of persons with disabilities in the TB and HIV response. ADPHA began their operations in 2009 in the districts of Masaka, Kalungu, Lwengo, Bukomansimbi, and Rakai, eventually scaling up to include other districts, and set their sights on fighting for people with disabilities in TB/HIV programming nationwide. ADPHA Uganda is proud to be the first organized peer-support network of its kind in Uganda, with 387 current members in nine districts who are people with disabilities living with HIV, many of whom also have lived experience of TB.
ADPHA’s work confirms that people with disabilities face significant obstacles in accessing TB and HIV healthcare services, despite making up 12.4 percent of Uganda’s population. Their 2024 report on physical accessibility assessment of five health facilities indicated that health facilities at both district and subcounty levels are inaccessible, lacking ramps, elevators, and accessible toilets for persons with disabilities. Furthermore, the absence of sign language interpreters at all health centers keeps people with hearing impairment away from healthcare.
Ms. Prossy Nanyombi, a person living with disability and also a peer monitor in Lwengo district, revealed that poor data- keeping can also make effective service provision difficult. Although tools do exist for data collection on disability status, health workers often don’t ask for or capture this information. “Some of our members persist to make sure that their disabilities are registered but health workers rarely heed to their pleas,” Nanyombi explained.
The 2024 ADPHA Uganda Accessibility Report showed still other barriers to accessing necessary TB and HIV prevention, diagnostic, and care services. Surveys found these numerous challenges are compounded by stigma and discrimination. Healthcare providers hold biases against persons with disabilities and have limited awareness of disabilities. In turn, persons with disabilities have limited knowledge about HIV and TB and lack accessible transportation, struggling to reach healthcare facilities.
People with invisible impairments like mental or hearing impairments, epilepsy, and autism face discrimination in service centers and public offices, where they may struggle to be accepted as disabled at all. “People with invisible impairments are also locked out of healthcare, as health workers only appreciate visible disabilities and rarely acknowledge/ realize there are invisible ones, resulting in further exclusion in accessing public services including healthcare,” explains ADPHA Program Officer Nissy Namuyomba.
According to Mr. Bbaale Mudasiru, a community leader of persons with disabilities in the Masaka district, government policies have failed to address these challenges. “There are many good laws and policies, such as inclusive education and the Building Control Act of 2013, but they are not being implemented,” he explains, criticizing government officials, specifically the Office of Physical Planners, for issuing permits for building construction without ensuring compliance with the Building Control Act 2013 and other government policies. “This reinforces limited access for people with disabilities,” he notes.
Ultimately, ADPHA’s accessibility report findings highlight the need for urgent action to address the barriers faced by persons with disabilities in accessing healthcare. “Government and stakeholders must work together with people with disabilities’ communities to ensure that healthcare facilities are accessible and inclusive for all,” the report emphasizes.
According to Mr. Joseph Walugembe, a disability inclusion specialist, expert recommendations to address these barriers include accessible infrastructure such as renovated healthcare facilities and education and training for healthcare providers on disability inclusion and awareness. In addition, community outreach is needed to build demand for health services and to understand where and how to provide accessible transportation for persons with disabilities. He notes that partners, governments, the health minister, civil society, and people with disabilities must work together to allocate resources, develop inclusive policies, support advocacy organizations, and engage people with disabilities in decision- making processes.
There are recent examples of how such stakeholder collaboration can succeed. In districts like Bukomansimbi and Rakai, where ADPHA Uganda conducted its first accessibility assessments and recommended what can be done, authorities took action by constructing accessibility ramps on toilets and other buildings at Kyetume Health Centre IV in Lwengo and added adjustable beds at Butega Health Centre IV in Bukomansimbi. Unfortunately, ADPHA advocacy can face barriers in this realm because the political will to allocate limited budgets toward accessibility doesn’t always exist, according to Dr. Happy Tukrinawe of Rakai Hospital.
ADPHA has also been working with Dr. Stavia Turyahabwe, assistant commissioner health services — Tuberculosis Leprosy Control Program of the Ministry of Health, Uganda. She noted that efforts are underway to enhance inclusivity in the fight against TB, but that there is a need for all citizens to coordinate nationwide and fight tuberculosis and leprosy. “This should not be the responsibility of only health workers. We urge the public to also be part of promoting inclusivity in health among persons with disabilities and other special groups,” she said.
ADPHA Uganda believes that people with disabilities themselves must play a key role in making change, and they strive to demonstrate leadership in their own communities. The association supports persons with disabilities living with HIV and affected by TB to advocate to make changes in their lives in many ways. These include community peer support on access to HIV/TB information and services, mentoring and coaching leaders to advocate for their rights, livelihoods and emergency support, information sharing and trainings in prevention of gender-based violence and sexual reproductive health rights as stipulated in the Convention on the Rights of Persons with Disabilities.
In fact, many of ADPHA Uganda’s advocacy efforts and regular trainings aim at empowering persons with disabilities to understand and assert their rights. Through continuous training from ADPHA Uganda, people with disabilities in the Masaka region have become actively involved in all government programs and have taken advantage of the available opportunities for persons with disabilities in both the government and private sectors. This includes government livelihood programs, such as the Parish Development Model, Emyooga, Youth Livelihood Fund, and the National Special Grant for Persons with Disabilities. “Although the Government of Uganda allocates 10 percent of all livelihood interventions to persons with disabilities, these grants have remained underutilized due to fear and lack of awareness among people with disabilities,” explains Namuyomba. It’s a policy in Uganda that 10 percent of all government programs should go to special categories including people with disabilities, elderly, youth, and women.
Finally, fighting for better healthcare for people with disabilities will require a broader social movement for people with disabilities writ large. As Juliet Nalubwama Mabike, chairperson of People with Disabilities in Kalungu and a peer monitor with ADPHA notes, apart from healthcare, even accessing education for children with disabilities is a faraway dream. “The Government of Uganda started to implement special needs and inclusive education policy five years ago where all children have to study together regardless of their disabilities. But, much like healthcare facilities, schools lack basic reasonable accommodations for children with disabilities, including assistive devices and accessible facilities, among others,” she says. Uganda, like many other countries in the world, still face challenges implementing disability- inclusive frameworks and policies. Part of ADPHA’s mission is to improve this.
More inclusive HIV and TB services for people with disabilities would save lives and reduce inequality. We need to build a health system that provides equitable access to quality healthcare for all regardless of age, gender, disability, or socioeconomic status and focus on the social determinants of health that keep people from getting public resources and care.