Deaf people’s nightmare of accessing HIV care services

Charles Nyagilo and his wife Caroline Achieng will both be going to Marindi Sub-county Hospital in two weeks’ time. It’s a trip they have been making every three months – to collect antiretroviral drugs (ARVs).

The two are discordant couples. While Charles, 55, is HIV-positive, his wife is negative. 

Charles, who was diagnosed with HIV in 2014, says he strives to remain virally suppressed by religiously taking his ARVs so as not to infect his wife. 

Caroline, on the other hand, has been taking Pre-exposure prophylaxis (PrEP), a drug used by HIV-negative individuals to prevent getting the virus.

“We both plan to have another baby,  and we want it to be free from HIV. We must therefore take all precautions and suppress the virus,” says Caroline.

 Their trip to the hospital is always full of fun as they get out of the village set-up to an urban area, where they interact with people from different backgrounds. 

But their joy is sometimes short-lived due to communication barriers.

Charles and his wife are both deaf. They use sign language to communicate.

When seeking health services, they struggle to pass messages as most of the health workers they interact with do not understand sign language.

The couple has two children, including a two-months-old infant.

“I had three children, but one died. The other two are healthy,” says Caroline through a sign language interpreter.

Despite trying his best not to transmit HIV to his partner by maintaining an undetectable viral load, Charles says he faces unique challenges while seeking HIV care services.

While healthcare providers engage people living with HIV in health talks when they go to hospital to pick their ARVs —   counsellors talk to patients about adherence to drugs while nutritionists advise them on the types of food to eat to stay healthy — ,  it’s never the case for Charles  and his wife.

He notes that deaf people often face barriers as most healthcare staff do not communicate in sign language and need to use an interpreter.  “I am unable to receive and access information that I need directly through a healthcare professional so I can make health-related decisions,” he says.

Charles notes that he usually misses important information on nutrition and other emerging trends on HIV. 

“I have learned to stay strong by engaging in farm activities and eating organic food. But getting more advice from health workers on how to stay healthy would be really helpful,” he says.. 

To overcome the challenges, the couple decided to join a group called Tunaenda Deaf Empowerment that brings  together people with hearing impairment from Homa Bay. The group also champions their rights. 

Group Chairperson Kennedy Oyoo says the outfit has 300 members. 

He says their main concern has been how to address access to information barriers. 

“Those living with HIV are the worst affected because despite making regular trips to hospitals, they cannot communicate with health workers,” he explains.

 Tonny Ogendi, a member of the group, says:  “My main concern has always been the risks of mother-to-child transmission. Deaf mothers with HIV are more likely to transmit the virus to their children because there is no one to tell them how to minimise the risks of transferring the virus,” he says. 

The group is now pushing the government to incorporate sign language interpreters in health service provision.

 Officials of the groups say the deaf shy away from seeking medical services because of the struggles they go through when trying to explain their condition to health workers.

 “It becomes worse when a deaf person is in need of HIV services. The communication barriers build a lot of stigma,” Mr Oyoo says. 

The National Syndemic Disease Control Council (NSDCC) is taking the lead in ensuring that all people, including persons with disabilities, access information on HIV.  NCDCC coordinator in South Nyanza Stephen Oyugi says HIV is still a public health challenge, especially in the lake region.  

The council has developed brailles, which allow blind and partially sighted people to read and write by touch.

“We have also tried to bring on board sign language interpreters to help us communicate with the deaf during public meetings,” Mr Oyugi says.  

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