Dr Irene Patrick-Ogbogu, Executive Director of the Disability Rights Advocacy Centre is living with post polio syndrome. She is one of the numerous Persons with Disabilities (PWDs) in Nigeria who has not been vaccinated against COVID-19.
She believes that the National Primary Health Care Development Agency, NPHCDA, did not prioritize PWDs in the vaccine roll out in the country, especially providing information targeted at PWDs, to enable them make informed decisions about getting vaccinated.
As a woman with a disability, Patrick-Ogbogu has underlying health challenges that makes her susceptible to contracting COVID-19, but she has refused to get vaccinated because she is worried she could suffer some side effects, due to her disability.
There are other PWDs across the country who have not been vaccinated largely because of the non-prioritization of PWDs by the NPHCDA which resulted in inaccessible vaccination facilities and inadequate disability-focused information about the vaccines.
The Need to Prioritize PWDs
Persons with disabilities are more likely to get infected with COVID-19 because of underlying medical conditions, congregate living settings, or systemic health and social inequities according to a Centre for Diseases and Control report. The report affirmed that all people with serious underlying chronic medical conditions like chronic lung disease, a serious heart condition, or a weakened immune system seem to be more likely to get severely ill from COVID-19. Adults with disabilities are three times more likely than adults without disabilities to have heart disease, diabetes, cancer, or a stroke.
Given the vulnerability of persons with disabilities to contracting COVID-19, it is expected that the COVID-19 vaccine roll out would prioritize PWDs. However, the National Primary Health Care Development Agency, NPHCDA, the agency of government responsible for COVID-19 vaccination in Nigeria, did not identify PWDs as one of the priority groups in the vaccination programme in Nigeria.
By the end of 2021, the NPHCDA planned to have vaccinated 40% of its population that are eligible for vaccination among which are; Health workers, support staff, contingency etc. (1%), Adults >50+ (10%), Persons with comorbidity below <50yrs (17%) and Other risk groups (12%).
Speaking to BONews Service, the Deputy Director, Medical Social Services at the Lagos University Teaching Hospital, LUTH, Ms. Titi Tade explained that because of the limitation around accessing COVID-19 vaccines, the government has prioritized those who would be vaccinated without consideration for PWDs.
Ms. Tade noted that PWDs ought to be prioritized in the vaccination because of their vulnerability and high level of susceptibility to contracting the virus.
She said, “when we describe vulnerabilities, we should be clear and understand that PWDs are vulnerable and without a lot of help they are unable to access healthcare.”
The social worker also noted that it is important that the government understands that not all disabilities are visible because those with invisible disabilities are largely going to find it difficult to get help.
Reacting to the development, Usman Abdullahi, the Acting President, Joint National Association of Persons with Disabilities, JONAPWD, explained that the non-prioritization of PWDs in the COVID-19 vaccine roll out means that over 15% of the country’s population has been exempted from the vaccination programme.
Usman added that if PWDs were being be prioritized in the vaccination program “we would have been listed as one of the priority groups, there would have been information in accessible formats for all disability groups, PWDs inclusion by health stakeholders in vaccination program, consultation with the disability community and use of accessible venue as vaccination centres.”
He said it is not too late for the government to retrace its steps and ensure PWDs are not exempted in the COVID-19 vaccine roll out.
A report on PWDs’ Access to COVID vaccine in Abuja by the Centre for Citizens with Disabilities (CCD) captured PWDs’ lamentation about total exclusion, even when they presented themselves for vaccination.
The report reads in part that, “many PWDs recounted that no priority was given to them at the COVID-19 centre in Abuja, especially among the Deaf cluster. They went further to disclose Lack of PWD desk officers at the available health facility; Lack of PWD’s representative among the Covid-19 Presidential Task Force programmes/activities; and Absence of sign language interpreters and braille guide for the Deaf and Blind at the vaccination centres.”
Non-Disaggregation of Data by Disability
Prior to the roll out of the vaccine, the NPHCDA launched an Electronic Management of Immunization Data (EMID) registration portal to enable people enrol for the COVID-19 vaccine.
While the portal captures the age, gender and medical history of registrants, it does not capture the disability status of registrants.
This, according to the Executive Director, Disability Rights Advocacy Centre, shows the insensitivity of governments to be disability inclusive in the fight against COVID.
She explained that the inability to capture disability disaggregated data of persons applying for the vaccination would also make it impossible to map and design adequate interventions regarding COVID-19 for PWDs.
Speaking with BONews Service during a media retreat on disability-inclusion in Abuja, Dr. Patrick-Ogbogu explained that the government needs to consider disability disaggregated data in all sectors.
Ms. Titi Tade of LUTH explained that “disability status should have been collected at the point of capturing people who want to get vaccinated because that is the beginning.”
She lamented that the NPHCDA portal captures by age and gender but not by disability, noting that disability status is not also captured at the point of vaccination.
Ms. Tade explained that such actions reiterate how disability issues are being disregarded.
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Vaccine Hesitancy by Persons with Disabilities
Some PWDs who have had the opportunity to get vaccinated have declined because of the uncertainty of the side effects that could arise because of their underlying health condition.
Ms. Titi Tade said while it is true that there is vaccine hesitancy among PWDs, “the reality is that you can’t blame PWDs because they understand their health situation more than any other person and there are no targeted information to help them dispel some of the concerns they may have.”
She explained that some PWDs who have other medical conditions like polio survivors, Spina Bifida, Hydrocephalus, Intellectual and Developmental Disabilities, among other neurological disorders might be hesitant about the vaccine, because they are not certain how the vaccine would react to their existing condition.
Tade noted that, “the same way the vaccine has clear indication about people who might have some allergies, it should also be clear about people with different categories of disabilities.”
She therefore urged the NPHCDA to provide targeted and specific information for PWDs, stressing that, “the more accurate information they have, the more informed decision they’re able to make. If we do not communicate effectively to this group of people, we will be leaving a whole segment of Nigeria’s population out of our communication.”
Dr Irene Patrick-Ogbogu who said she is keen to get vaccinated against COVID but for the fear of the side effects, mentioned that she ensured that all her staff are vaccinated, thereby possibly reducing her chances of contracting the virus.
She however said that her decision to refuse the vaccine was supported by her medical doctor who understands her current health condition.
“My doctor and his colleagues abroad are currently doing some research to ascertain how the available vaccines can affect people who have PPS. Unfortunately, the NPHCDA is supposed to be leading on this type of research to enlighten people with different kinds of disabilities, because not all PWDs can afford to commission doctors to do research for them.”
She tasked the NPHCDA to delve deeper and understand why there is vaccine hesitancy among PWDs so that the doubts can be addressed.
Action Points for Stakeholders
Dr. Irene Patrick-Ogbogu charged the NPHCDA to lead on research that can help PWDs make informed decision which would drive vaccine confidence, while Ms. Tade of LUTH believes that it is important for the NPHCDA to engage disability and medical experts, who are termed as opinion leaders, to encourage PWDs to get vaccinated.
Mr. Usman of JONAPWD agrees that it is essential for the NPHCDA to work closely with JONAPWD, an umbrella body for disability clusters and organizations, which has a national spread across all the 36 states and over 500 Local Government Areas.
However, the CCD’s report on PWDs’ Access to COVID vaccine in Abuja gave recommendations to various stakeholders involved in the vaccination programme, to ensure that PWDs have unhindered access to COVID-19 vaccine. The group recommended that, “the NPHCDA authorities should collaborate with the National Commission for Persons with Disabilities (NCPWD) to build the capacity of managers, administrators and field health workers working on COVID-19 vaccination across the 774 LGAs. on how to respond competently and confidently to the needs of all PWDs’ clusters.”
“It was also recommended that the “NPHCDA authorities should work closely with the NCPWDs to design a stand-alone policy guideline that can support COVID-19 vaccine health workers during health service delivery for PWDs.”
For the NCPWD, the report wants the NCPWD to intensify efforts to engage and collaborate with NPHCDA, Nigeria Centre for Diseases Control, (NCDC), NAFDAC and other relevant health stakeholders to ensure PWDs are not left behind in the implementation of COVID-19 vaccine plans for PWDs.
It also wants “Civil Society Organizations and Organizations of Persons with Disabilities to jointly educate PWDs on proper information about COVID-19 vaccine to debunk the current misconceptions about the vaccine among PWDs community.”
“This OUTBREAK story was supported by Code for Africa’s WanaData program as part of the Data4COVID19 Africa Challenge hosted by l’Agence française de développement (AFD), Expertise France, and The GovLab“