A 55-year-old man, Patrick Akpan, tested HIV positive 20 years ago and vowed not to allow stigma and discrimination to ruin his health. As the Lagos State Coordinator for the Network of People Living with HIV and AIDS in Nigeria, his journey of resilience and advocacy continues to inspire efforts to uplift people living with the condition as the global community marks 2024 World AIDS Day today, SODIQ OJUROUNGBE reports
Patrick Akpan’s story is one of great strength, rising above pain and hardship. Now a voice for others living with HIV, his journey was once marked by ignorance, and fear as he fought an infection that almost claimed his life.
For Akpan, the moment of his diagnosis in 2004 was nothing short of a death sentence. Going back to memory lane, when our correspondent visited him at the Lagos NEPWHAN office in the Costain area of the state, he said ignorance almost made him give up on life when he discovered he was positive.
With a deep breath, the man who was clad in a black polo shirt with the bold inscription ‘#END HIV’ during the visit, recounted the darkest chapter of his life, a time when he never thought he would see another day.
“When I found out I was positive, I thought that was the end. I was so ignorant, I didn’t know that there was any remedy. I just believed that once you test positive, death is certain,” he expressed.
Before knowing his HIV status, Akpan’s life seemed promising as he was working as a fleet manager for a major oil company in Lagos, a position of responsibility and respect.
Despite earning big, Akpan’s health began to decline, his body was betraying him, and it was becoming more difficult to hide the truth.
The signs were impossible to ignore; boils appeared on his body, relentless and painful, no matter how many antibiotics he took.
Speaking about the early challenges he faced before going for HIV screening, Akpan said, “I just realised that I keep falling sick, I keep going down despite the money I was getting. I was looking like somebody who had not seen money before.
“I was controlling a large fleet of vehicles, and I had drivers under me and most of those drivers were asking me: sir, what is really going on? You are not looking good. For a driver to tell his boss that he is not looking good at all, you should know that my situation was really bad.
“But I was still working and you know logistics is a very tedious job. They can call you in the middle of the night for rescue services. And so I was also stressed with the job. But I was going down every time I started having boili all over my body and all that. It was one of my brothers that I was staying with who said: ‘you have been falling ill and you have not gone to the hospital, can’t you go and check yourself? Go to the hospital, go and treat yourself so that you can be well. You can’t be working and you are not looking well every day you are sick.’
“So, I walked into Ikeja General Hospital then, they were not calling it a teaching hospital, we were calling it a General Hospital, Ikeja. I walked in there and I demanded to do an HIV test on my own because I had taken drugs and some treatment here and there, but there was no improvement; these boils keep coming regularly. If I treat this one with antibiotics this week, by next week another set will come out. So, it became an embarrassing thing.
“When the hospital gave me a sealed report and said I should take it to the Nigeria Institute of Medical Research, I collected that document, and I opened it because it is my health. Nobody should know about my health more than anybody. So, you can’t conceal what is my own, and somebody else cannot know better than me. So I open it and look at it. I saw something reactive. Then I didn’t know what reactive meant, but I saw something. He said I should do a confirmatory test.
“As somebody who has gone to school; to confirm something means that they have seen something. For you to be asked to go and confirm whether it is what it is, I concluded that this looks like I have HIV. Based on that, I refused to go. I stayed for one more year. I was hiding it, I was highly ignorant. I didn’t know there was any way out. I just felt since it is HIV, I will die. So, I was waiting for the day that death would come.”
For a whole year, Akpan said he lived in denial, hiding his condition even from the woman he loved.
“I tried to find out how I got infected. I had already had a fiancée that I wanted to marry who is eventually my wife today. I invited her from Port Harcourt to come to Lagos. She came and when she came, I told her that we needed to do a test. I said we need to do HIV tests so that we know our status.
“I wanted to do the test so that I could know whether she was HIV positive. After we did the test, I told her to go back, I didn’t allow her to look at the test, because I already knew my own. So, I decided that I went back to the place. At first, they did not want to give me the test result. But since her own was negative, they didn’t have difficulty in giving me. Again, my own remains reactive. They now asked me to still go back to the Nigeria Institute of Medical Research for treatment.
“I was thinking that that treatment was for them to kill me. So, based on that, I refuse to go to NIMR. I say I would rather die naturally than go to NIMR where somebody would just inject me, and I would just die quickly. So, I decided not to go. Since I noticed that my then fiancée was negative, I didn’t have any problem with her, I started facing my life,” he stated.
Transmissible disease
According to the World Health Organisation, HIV, or Human Immunodeficiency Virus, is a virus that attacks the body’s immune system, specifically the CD4 cells, which help protect the body from infections. If left untreated, HIV can lead to AIDS, the final and most severe stage of the infection, where the immune system is severely damaged.
WHO noted that HIV is primarily spread through contact with certain body fluids, such as blood, semen, vaginal fluids, and breast milk.
While there is no cure for HIV, advancements in treatment, particularly antiretroviral therapy have allowed people living with the virus to lead long and healthy lives.
The global health agency estimated that about 39.9 million people were living with HIV at the end of 2023, 65 per cent of whom are in the WHO African Region.
The health body added that an estimated 630,000 people died from HIV-related causes and an estimated 1.3 million people acquired HIV in 2023.
Also, the United Nations Children’s Fund revealed that Nigeria has the world’s second-highest burden of HIV/AIDS, with an estimated three million people living with HIV and 190,950 new infections recorded in 2015.
Effects of ignorance
Akpan said that a year after he refused to seek medical help, his body reached a breaking point and he slumped.
Narrating his experience, he explained, “I struggled to stand up, but it was hard for me to stand up. I said, oh, this is getting to the point of death. I concluded that this thing finally succeeded in killing me.
“When I woke up, I raised my head, and everything in my room turned to four. I was not seeing it correctly again. So, my eyes went to one side. It remained there and never came back to this side. I struggled for the eye to turn again, but there was no way. I saw one item in four places, sometimes it looked like five, and sometimes looked like six. So, sometimes I will not even know which is the main item. And that was the beginning of my trouble.
“I called my cousin to come from Akwa-Ibom, he came by night bus and got to my side in the early hours of the second day. I was almost gone, I was not unconscious, but I was not feeling okay. I was having a serious headache; I have never had that kind. I am sure any day I have that kind of headache is the day I am going to die. The headache was unimaginable and unexplainable.
“When my cousin came, I privately disclosed my status to him and told him what to do should I die. And that he should not allow anybody to molest my then fiancée. She has no hand in what happened to me.
“They (my cousin and fiancée) took me that morning to the General Hospital again. This time I was admitted to the General Hospital, I spent close to one month in that hospital. I was very, very sick, and almost everybody at that time who was with me in that ward died. I believe the ward was for people living with HIV, and everybody died except me. When somebody dies, they will bring another person. I can’t know the count, but I know that there were more than 10 that were in that ward, and none of them came out alive. It got to a point where I had to tell them that I didn’t want to stay in that world again since everybody was dying. They lied to me that the people are not dying, that they are recovering was why they took them away. They didn’t know that I was still having sense in myself, I was seeing that these people had died. They had to move me out of the place.
“During this period, I can tell you that my body was pulling down. My body would just melt and fall out. I was watching myself as my flesh was falling out. If there is any classification of it, I think I was having the last stage of AIDs. That is why I said I am living a bonus life because, at that time, I had already concluded that I may not survive this.”
The pathway to getting better
Despite this, Akpan survived. It wasn’t luck, but a strong will and hope that kept him going.
After months of getting sicker, close calls to death, and feeling like his body was giving up on him, Akpan found a way forward when he finally decided to get treatment. Going to the Nigeria Institute of Medical Research marked the turning point.
Recounting the pathway to getting better, he said, “When I saw that I may die, I decided to reveal to my fiancée that I am HIV positive and her result was negative. I told her not to waste her time waiting for me, I told her not to bother because I would likely die, and she could not even marry me with HIV.
“She said that it is not true that she will marry me unless I die. She even said I am not going to die. I was just laughing because I thought she was just doing it for me to feel better. I told her to go home, freshen up and come back. If at all she wants to come back. But my thinking was that she would not come back from there. So, I told her where to keep the key, I gave her the phone number of my cousin so that when I died she could call him. And I also told her about a driver among the fleet that would take my corpse home. And how my burial should be done. So, I planned my burial. And I told them what to do and the kind of casket that they need to put me and all that. At the end of it, she stayed, and she now insisted that we should go to NIMR.
“I went to NIMR, I did a confirmatory test; they started checking me and all that. It took them about one month. I went there in August, and by September I had still not been given drugs. There, I now saw a large number of people who were also living with HIV. I began to say so I could live, I now realised that I made a mistake, and I would have come since. A year earlier would have been better for me.
“They checked my CD4 count to know the level of immunity that my body has. As at that time when they tested me, my CD4 count was as low as 10; one of the least that ever lived.”
Called walking corpse
Speaking further, Akpan said one of the doctors at NIMR called him a walking corpse because of his low immunity level.
“I remember one of the doctors when I was telling them when they refused to give me drugs, they said they had to check my kidney. One of the doctors said they should just give me the drug and that I was already a walking corpse. He thought maybe I would not survive.
“When they placed me on drugs, I took the drug for like one month. The second month I was in my house, I started getting better. I started coming up. But that eye was still doing what it was doing.
“One day, I was just closing my eyes, as I opened my eyes, my eyes moved back to normal. My eyes just turned from the place that it was hanging. My eyes just came back and I started moving my eyes.
“To cut the story short, that woman married me. And Today we have three lovely children. My first child is 18 years old, the second one is 16 and the last born is nine. So I have three children, all of them are HIV negative. And this woman is still HIV-negative,” he stated.
Turned to HIV champion
After getting better, Akpan resigned from his paying job and decided to volunteer and help create more awareness about HIV/AIDS.
Speaking on what motivated him to become an HIV champion, he explained, “I think for me, I am determined to save life. I said if God can allow me to live with the situation that I was, then I need to do something that would make other people live. So, I decided to come out openly with my HIV status. I am not a medical person, if I were a medical person, I would be looking for a cure for HIV.
So, I feel I can render my service by telling the people that you can live with HIV and you can become whatever God has destined you to become.
“I started volunteering at the NIMR in their support group. The support group was big, they had projects, and I was going there to help them. I told them that I wanted to serve. They were not even giving me money, no transport, nothing; I paid for my transport to NIMR.
“To understand more about NGOs, I decided to go to the University of Lagos to read a course related to humanitarian service which is community development and social works at the master level. After my graduation, I contested and was elected as the deputy coordinator of the support group.
“And after two years, the coordinator resigned. I became the coordinator. After that, I contested again. I became a substantial coordinator at NIMR. I was coordinating the support group at NIMR. So, I was there for six years.
“After I finished my tenure, I started a community support group which is the Community Care and Development Initiative. I started that support group at Ibeju-Lekki where I currently live. From that support group, I came out to contest as the coordinator of NEPWHAN.
“This is not the first time I contested. When I was in NIMR, I lost. But I persevered, I continued, and I did it again in 2019 and I won. As you can see I am not a Yoruba man, but I am a coordinator in Lagos State. So, because of the work that they saw me doing, I volunteered. I was doing the work, the work myself. I was also given another opportunity to go for another six years. So I’ve served for five years. I still have five years left. I think I will be one of the longest-serving NEPWHAN coordinators.”
Leveraging on opportunities
Akpan stated that being HIV positive has, surprisingly, given him an unexpected advantage over others.
He added, “So, I feel I can render my service by telling the people that you can live with HIV and you can become whatever God has destined you to become. Today I sit down with prominent people, the Governor of the state, the wife of the Governor, directors of industries and all that. I interact with them because of HIV, not because of my education.
“Being positive is an advantage to me because it has led me to know a lot of people. I interact with the United Nations, and a lot of people that you may not even think of; USAID, Global Fund. I have interacted with so many international organisations because of my HIV status. So, people who are hiding are still living in the way I was living before. They do not know that opportunities are waiting for them in this field.”
Raising Awareness from the start
As the world moves toward the goal of ending AIDS by 2030, Akpan stressed the importance of continuous awareness campaigns and government action to ensure that the fight against the disease remains on track.
Akpan noted that one of the most crucial steps in combating HIV is early education.
He proposed that HIV should be integrated into school curriculums across Nigeria.
“HIV should be a mandatory course for students. When young people are educated about HIV in school, they will be better equipped to challenge stigma and misinformation when they encounter it later in life,” he maintained.
He highlighted the difference between teaching children and adults, noting that while children’s minds are like ‘empty vessels’ ready to absorb new knowledge, adults have already formed their opinions and may resist learning about HIV.
Akpan urged that awareness should be consistent, with radio stations, media outlets, and corporate social responsibility programmes playing a key role in spreading the message.
Future of HIV treatment in Nigeria
A significant concern for Akpan is the planned withdrawal of international donors, such as the President’s Emergency Plan for AIDS Relief and the Global Fund, by 2030.
Akpan said from 2023, the government would need to take on full responsibility for HIV treatment, including providing drugs for people living with HIV.
Akpan expressed his fears for the future, noting that without continued government support, many Nigerians could be left without access to life-saving HIV treatment.
“If the Nigerian government fails to take this seriously, all the progress we’ve made could be undone,” he warned.
He stressed that many people may not be able to afford the medications if they are no longer provided for free, leading to a potential rise in HIV-related deaths and infections.
He advocated for the inclusion of HIV treatment in Nigeria’s health insurance plans, hoping that both private and public insurance schemes would recognise the importance of covering these treatments, even if it means subsidising costs for people living with HIV.
What govt. should do
Akpan called on the government to begin preparing for the transition.
“There is still time before 2030, and the government should learn from the best practices that international donors have been implementing,” he stated.
He also stressed the need to incorporate experts who have been working in the field of HIV into the government’s health infrastructure.
By absorbing these professionals, Akpan argued that the government can ensure continuity and maintain the expertise needed to manage the country’s HIV response effectively.
Change in attitude toward treatment
A key challenge in the fight against HIV, according to Akpan, is that many people fail to take treatment seriously until they fall ill.
“When people are diagnosed with HIV but feel healthy, they often resist taking medication,” he explained.
Akpan emphasised the importance of starting treatment immediately after a diagnosis, even if the person feels well.
“Don’t wait until you’re sick to start taking your medication. If you catch the disease early and stay on your treatment, you can live a long and healthy life,” he advised.
The path to ending AIDS
Akpan said he is sceptical about Nigeria’s ability to eradicate AIDS by 2030, citing the large number of people still unaware of their HIV status.
“It’s only possible if we stop new infections, but as long as new infections keep happening, AIDS will persist,” he warned.
For Nigeria to meet its target of ending AIDS by 2030, Akpan insisted that every citizen must take responsibility for their health by getting tested, knowing their HIV status, and starting treatment if necessary.
“Early detection and proactive treatment adjustments can help prevent serious health issues down the line,” Akpan said.
World AIDS Day is commemorated on December 1 every year to raise awareness about HIV/AIDS as well as to honour persons who have died from AIDS-related illnesses.
According to the World Health Organisation, the theme for this year is “Take the right path: My health, my right!”
The theme aims to address the inequalities that hinder progress in ending AIDS by 2030.
