Traumatising narratives of living with HIV/AIDS

Many wonder about the continuous suicidal attempts in the country especially at Lagos lagoons. Little will people know that these are people who have sentenced themselves to death after hearing the life changing news about their health.

“I thought it was the end of the world when I received the shocking news that I had Human Immunodeficiency Virus (HIV) that causes Acquired Immune Deficiency Syndrome (AIDS) and I was contemplating on committing suicide. I condemned myself because it was then, a disease for the so-called accursed, people,” Mr. Salisu Ahmed said.

Ahmed faced humiliation from people around him, even at his work place where he ekes out a living and supports his small family.“Before the infection I was formerly a teacher, I dropped out because of my condition. I was deteriorating clinically. “I was advised in my own interest by the school management to leave so that I will not wait until I get sacked or get booted out,” he said.

Ahmed also faced rejection in his residential place because his condition was no longer a secret since his wife abandoned him in his deteriorating state and his two tender children, who he struggled to cater for despite his condition.

“I was married with two children, male and female. I could not at that point think of anything except when I was going to die because my wife was not well informed about the disease, if she had being well informed she wouldn’t have behaved the way she did by leaving me alone with the children.

“But I am here today, 16 years after she left me, she died without even contacting the HIV. My two children are negative and they are fine. I still take care of their academic pursuit, they are in tertiary institutions now,” he stressed.

The 57-year-old father of two, whose wife left him after hearing the sad news, said he never knew he had HIV or how he contacted it.“If I say mine is from either unprotected sex or any other means, I might be jumping the gun because I can’t just assume or presume that this is exactly the channel from which I got the infection, but it has happened and the next thing is for me to continue with my life and live well.”

According to the World Health Organisation (WHO), HIV can be transmitted through: oral, anal or vaginal sex with an infected person without using condom, through blood transfusions, blood products, or organ/tissue transplants that are contaminated with HIV, bitten by an infected person, contact between broken skin, wounds, or mucous membranes and body fluids, deep open-mouth kissing when both partners have sores or bleeding gums and sharing of needles or syringe with an infected person as well as from mother to child during pregnancy, birth, or breastfeeding.

Mr. Felicia Odumegwu (not real name) is another Nigerian the country would have lost to the tragic incident of the lagoon.“I wanted to end my life by jumping into the lagoon when the doctor gave the most shocking news of my life,” she said soberly.The 55-year-old mother of three said she contacted the virus from her late husband. “I discovered I had HIV probably in the year 2000. I got the infection from my late husband, and by then it was not that known.

“I lost my first husband when I was young and I remarried. I was pregnant for my first husband but the child died, so, unknowingly to me, when I got married to my second husband, I didn’t feel anything and to my greatest surprise, pregnancy brought it out,” she recalled.Narrating her ordeal to The Guardian, Odumegwu said: “I was pregnant and I went for ante natal, I was not sick and nothing was wrong with me, but where the test was conducted it was found that I was HIV positive, there was nothing I could do, they asked me to call my husband, which I did and he came, the hospital workers told him everything without telling me, so when I found out, I felt like jumping into the lagoon to end my life, but to God be the glory for the type of man that was with me. He said nothing is wrong that we should forge ahead.”

The mother of three who was still devastated by the sad news after her new marriage and was scared it could crash said she sought for second opinion and was referred to Ayinke House, General Hospital Ikeja, Lagos where the doctor instructed her to conduct another test, which she did and was told she had many infections in her body.“I was detected positive and after all said and done, my husband consoled me and kept on encouraging me, I had three children for him and all of them are negative, including him,” she chorused.

On whether she sought for help in religious houses or traditional houses, she said, “I went to one church to have my baby, but at the end I was afraid because I might infect them, so I went to general hospital.Odumegwu’s husband and children are the only people aware of her condition as her husband strictly instructed her not to tell the other family members, otherwise she would be stigmatized.

“My husband’s love kept me going, he has stood by my side, encouraged and supported me through this trying times. He told me not to divulge the news to his or my family members, but it should be kept as secret within us,” she added.Narrating his ordeal to The Guardian, Paschal Kenneth from Imo State said he was living with his uncle in Lagos and was engaged with a small job. He said at first he started feeling very sick, and thought it was malaria, took malaria drugs after the test but the ailment persisted.

“I went for the malaria test with my uncle but it was negative. The lab technician advised that I do the Human Immunodeficiency Virus (HIV) test but my uncle objected that I could not be suffering from that because I wasn’t in any relationship then.”Kenneth said his oblivious uncle’s wife thought he was suffering from pneumonia because he normally sleeps naked with the air conditioner switched on.

“My uncle then took me to AIDS Prevention Initiative in Nigeria (APIN) clinic in Lagos University Teaching Hospital (LUTH). He took me there because the cost of running the test in that private lab is quite expensive. After the test, it was positive. It was very devastating. I almost killed myself. My uncle and the doctors had to counsel me. I was left with no choice than to start medication.

“I almost developed AIDS because at that time, my CD4 count was very low, my immune system broken, I even had rashes. After sometime, my uncle’s wife insisted I couldn’t stay with them any longer. It was a big war and for my uncle to save his marriage I was asked to go. My uncle got me a house. He was paying the rent, feeding and other expenses,” Kenneth lamented.He said that the worst part of the ailment was the stigma. “My uncle’s wife thought looking at me alone can get her the disease. She will normally, sprinkle the whole house with salt water and even soak the plates and cutleries too.

“After sometime, I became religious with my drugs and my CD4 count came up. When I was at Owerri, due to the stigma, I refused to attend clinic at Federal Medical Centre, Owerri because people I knew might see me. My uncle will go to the HIV clinic here in LUTH get the drugs and send it through courier to me to Imo State until I finally returned to Lagos.”

CD4 cells are white blood cells that fight infection. When the CD4 count drops below 200, a person is diagnosed with AIDS. A normal range for CD4 cells is about 500-1,500. Usually, the CD4 cell count increases when the HIV virus is controlled with effective HIV treatment.He said: “I contracted the disease from one of my girlfriends in Imo State then because all the while I was in Lagos with my uncle, I did not have any relationship with anyone.

“I am happily married now. I met my wife in this clinic though no kids, we are doing fine. My wife knew her status for a long time. She is very religious with her diet and drugs, nothing disturbs her and she is very beautiful. I wasn’t too good then but I am okay now. “The stigma is there especially from family members and friends. The drugs are free but you must know the name of the drug because when you come for drugs, the first question is which drug did you use last?”

Mrs. Adejoke Adewale was unaware she had the virus. Adewale who hurriedly came to collect her drugs at LUTH, because she was two days late from her appointment for new drugs.The worried Adewale, who is in her late 30’s, begged the man in charge of the drugs to pardon her as her aged mother, who has tuberculosis, developed an attack and she had to rush her to the hospital.She told our correspondent, who disguised as a patient, who came to make enquiry on how the hospital runs their treatment, that she was unaware she had the virus.

According to her, for five years she had been seriously sick and bed ridden in hospitals she was taken to for treatment. Little did the doctors there know she had HIV as they kept on treating her for malaria and typhoid fever.Her condition kept deteriorating as she lost all hope of ever making it that particular month since it was middle of the month.

Adewale said a doctor suggested she carry out a test on HIV, which she did and the result was positive. She reluctantly asked the doctor what was the meaning of the disease due to her ignorance about it. She said the doctor explained to her and told her not to lose hope as it could be managed.

Fifty-four-year-old Ibrahim Umoru, a former coordinator of the Lagos State Chapter of the Network of People Living with HIV/AIDS in Nigeria (NEPLWAN), who has been living positively with the virus for over 19 years told The Guardian that the major problem facing efforts to tackle the disease is fear, stigma and ignorance.
Burden of disease

According to a recent report released by The Joint United Nations Programme on HIV/ AIDS (UNAIDS) titled ‘Knowledge is power,’ in 2017, a total of 36.9 million people were living with HIV worldwide, three quarters of people living with HIV (75 per cent) knew their HIV status compared to just two thirds (67 per cent) in 2015, while 21.7 million people living with HIV (59 per cent) had access to antiretroviral treatment, up from 17.2 million in 2015, as well as 1.8 million people newly infected with HIV.

The UNAIDS report further revealed that 9.4 million people living with HIV are unaware they have the virus.The UNAIDS leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 United Nations (UN) organizations— the United Nations High Commissioner for Refugees (UNHCR), the United Nations International Children’s Emergency Fund (UNICEF), World Food Programme (WFP), the United Nations Development Programme (UNDP), the United Nations Population Fund, formerly the United Nations Fund for Population Activities (UNFPA), the United Nations Office on Drugs and Crime (UNODC), UN Women, International Labour Organisation (ILO), the United Nations Educational, Scientific and Cultural Organization (UNESCO), WHO and the World Bank— and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals.

Head of Department (HOD) of Haematolgy, LUTH, Prof. Sulaimon Akanmu, said the prevalence of HIV in Nigeria is over 3.2 million. “From that prevalence, we estimate that between about 2.8 million to three million people are living with HIV/AIDS in Nigeria and around 1,057,000 people are on antiviral drugs so we need to know where the rest of the people are, we really need to look for them so that we can put everyone living with the virus on treatment,” he said.

According to the National Agency for the Control of HIV/AIDS (NACA), the prevalence of ailment in Nigeria was 1.8 per cent in 1991, peaked in 2001 at 5.8 per cent and is currently on the downward trend of about 2.8 per cent. This indicates that about three million people are still living with HIV/AIDS Nigeria.
Director, Research Monitoring and Evaluation Directorate, NACA, Greg Ashefor, said: “Based on our data, only 1, 090,233 persons (747, 853 females and 342, 380 males) are currently on HIV treatment in the country as at June 2018.

“This number includes all persons on treatment programmes supported by the US Government (PEPFAR), Global Fund, and the Federal Government. The Federal Government programme covers 62, 120 persons on treatment, with 44,116 persons in Taraba and 17,904 persons in Abia.”
Challenges in accessing treatment

Nigeria has the second largest HIV epidemic in the world and one with the highest rates of new infection in sub-Saharan Africa.It is estimated that around two-third of new HIV infections in West and Central Africa in 2017 occurred in Nigeria, with many people living with the virus unaware of their status and the country has continued to fall short of providing the recommended number of HIV testing and counselling sites.

Low levels of access to antiretroviral treatment remains an issue for people living with HIV, meaning that there are still many AIDS-related deaths in Nigeria as approximately 150,000 people died from this virus, in Nigeria, in 2017. Odumegwu said accessing treatment is free but a bit tasking for those in their third line or advanced stage.

She maintained that challenge of the N5,000 bleeding fee being paid twice a year is not convenient for the low-income earners.She said though, the bleeding fees take care of assessing the liver, kidney, bladder and other vital organs in the body to ensure the person stay well and live healthy.

“The challenges is the N5,000 bleeding fees, it is somehow difficult because of our income. The low income earners will find it difficult to meet up, though it is only two times yearly, it is still difficult for us to meet up.“This bleeding is to check the liver, bladder and other vital organs in the body, the drugs for the HIV and every other thing is free including the viral load.”

Stressing on the availability of drugs, Odumegwu said: “The drugs are available, it is easy to get because it is surplus in facilities, including here in Lagos University Teaching Hospital (LUTH).”She added: “Government should help to support more so that the low income earners will be able to do this bleeding because it helps a lot, especially to monitor the state of the person’s health. If they are to change the drugs for the person, it will be possible and know the right thing to do, but whereby the bleeding is not done, the health officials won’t know the next step to take.”

Listing the names of the HIV drugs and the challenges in getting them Odumegbwu said: “We have for first line- Atripla (Tenofovir Disoproxil Fumarate) and Trovada (Lamivudine Tenofovir Disoproxil); and the second line, we have Alluvia (Lopinavir Ritonavir) and Cambovan Nevirapine (Lamivudin Nevirapine and zidovudine – AZT); and the third line, I can’t remember.

“But we only have in stock the first and second line, but that of the third line we have not got it completely. I also implore the government to do something concerning the availability of the third line drugs,” she stressed.According to sources at the hospital, the third line treatment for HIV people are very expensive and scarce. It involves paying as much as N100, 000 per pack. Odumegwu explained further, “That is the advanced stage of the HIV people. The drug is for every stage, but based on the grade of the person, if he falls from the first line, he enters second line and if the person falls into the third line, which is the final stage, he needs the drug to survive.

“The third line drugs is not in stock in LUTH, you have to purchase it and it is very scarce and expensive and if low income earner should fall into the third line category that means the government should help to dig the grave of the person or they help to support the person,” she stressed.

The UNAIDS new report canvassed urgent steps to link those unaware of their status to HIV testing and treatment services.“To reach the millions who do not know their status, we need universal access to HIV testing services. HIV testing should be as widely available as pregnancy testing,” the Executive Director, UNAIDS Michel Sidibé said.

The UNAIDS report showed that one of the biggest barriers to HIV testing is stigma and discrimination. Studies among women, men, young people and key populations have revealed that fear of being seen accessing HIV services, and if the person is diagnosed, fear that this information will be shared with family, friends, sexual partners or the wider community, was preventing them from accessing HIV services, including HIV testing.

For key populations—gay men and other men who have sex with men, transgender people, sex workers, people who use drugs, people in prisons and other closed settings and migrants—these barriers can affect access. Stigma and discrimination, from society and health services, can deter members of key populations from accessing health care, while criminal laws can compound that discrimination, increase rates of violence and create additional barriers, including fear of arrest and harassment.

Other barriers include violence or the threat of violence, especially among young women and girls. Parental consent laws and policies are also a barrier, since in some countries young people under the age of 18 years need parental consent to take an HIV test. In addition, services are often too far away and difficult to access or too expensive. There can also be delays or failures in returning HIV test results and delays in treatment initiation.

Finding solutions
Another HIV patient, who preferred anonymity said: “We don’t have vaccines in this part of the world, but the ARVs which are used to treat and manage HIV patients are readily available, all one just needs to do is to know their status so they can start accessing their treatment on time.Adewale said government should assist low-income earners with regard to the cost of bleeding test twice yearly. “There is the need for increase awareness for people to know there is treatment and management for HIV. All people need to do now is to know their status and if they are HIV negative all they need to do is to follow all the necessary precautions so they can continue to be negative, if they are HIV positive, there is treatment and management that can help them live a healthy and long life,” she added.

Today, December 1, is World AIDS Day (WAD), the 30th edition in the series. Thirty years of activism and solidarity under the banner of WAD. Thirty years of campaigning for universal access to life-saving services to treat and prevent HIV. But after 30 years, AIDS is still not over.WAD is a day to remember the millions of people who have lost their lives to AIDS-related illnesses, many of whom died because they could not access HIV services, because of stigma, because of discrimination and because of criminalization of key populations.

On this WAD, UNAIDS is campaigning for people to know their HIV status and their viral load. “In 2017, 9.4 million people were simply unaware that they are living with a potentially deadly, but treatable, disease. If people do not know their HIV status, people who are living with HIV cannot start treatment, and people who are HIV-negative cannot get the knowledge and skills they need to keep that way. If people do not know their HIV status, they cannot protect themselves, their families, and their partners. If people living with HIV do not know their viral load, they would not be sure that the treatment is effective, protecting their health and stopping HIV transmission.”

The UNAIDS report, Knowledge is power, revealed that although the number of people living with HIV who are virally suppressed has risen by around 10 per cent in the past three years, reaching 47 per cent in 2017, 19.4 million people living with HIV still do not have a suppressed viral load. To remain healthy and to prevent transmission, the virus needs to be suppressed to undetectable or very low levels through sustained antiretroviral therapy. And to effectively monitor viral load, people living with HIV need access to viral load testing every 12 months.

“Viral load testing is the gold standard in HIV treatment monitoring,” said Sidibé. “It shows that treatment is working, keeping people alive and well and keeping the virus firmly under control.“Viral load monitoring needs to be as available in Lilongwe as it is in London,” said Mr. Sidibé. “HIV testing and viral load testing should be equal and accessible to all people living with HIV, without exception.”

Akanmu said the funders of HIV programme have invested a lot in treatment and tried to prevent transmitting the virus to others. He continued: “We are ready to screen more people. If a child is infected, we have to screen other children in the family, and all those living with them. It is called targeted therapy.”

Akanmu disclosed that the Centre for Disease Control initiated a nationwide study in Nigeria visiting families in Nigeria to conduct HIV testing services so that the result of the study could help to redeem the principles of the estimate.

On prevention of mother-to-child transmission, he said: “We do not want any Nigerian child to be born with HIV infection. As to prevention of mother-to-child transmission of HIV, we know that target has not been reached. If we identify a woman in pregnancy to be HIV infected, we can deliver what is called Prevention of Mother-to-Child transmission (PMTCT) services such that the baby can be protected so as not to acquire the virus from the mother. Therefore, our target is that everyone pregnant in Nigeria should be offered HIV testing services and if we get any of them that are infected, then we deliver the PMTCT services.

“So, our problem is that the coverage of testing of HIV infected pregnant women is low. We are yet to reach every pregnant woman in the nooks and crannies of Nigeria to provide HIV testing services. The pregnant women who are tested are those living in the urban areas in Nigeria and are going for antenatal care in government hospital for every woman not attending government hospital are attending the traditional birth attendant clinic. We know that we have reached every woman that is pregnant in Nigeria to deliver HIV testing services and that is why from estimate you see that 30-35 per cent of pregnant women in Nigeria have not been reached for PMTCT HIV services.”

Akanmu urged Nigerians to check their status regularly, and if it reads positive, they should approach any government hospital for counselling and treatment, stressing that drugs for HIV are free.

The UNAIDS report highlighted how providing a variety of testing options and services, such as community-based testing and home-based testing, can help mitigate many of the logistical, structural and social barriers to HIV testing. They offer testing options for people who live far away from health services, do not have the constraints of inconvenient opening hours, which is particularly important for men and people from key populations, and do not come with the stigma and discrimination often perceived in traditional health and HIV services.

“We cannot wait for people to become sick,” said President of the Platform of Networks in the Fight Against AIDS, Imam Harouna Koné. “We must go out to our communities and offer HIV testing and treatment services.”The report outlined the importance of taking a five Cs approach: consent, confidentiality, counselling, correct test results and connection/linkage to prevention, care and treatment. “There isn’t a one size-fits-all approach to HIV testing,” said Sidibé. “There are a number of different strategies needed to reach people at risk of HIV, including innovative approaches such as self-testing, where people may feel more comfortable that their privacy is respected.”

Another important step to take is to integrate HIV testing services within other health services, including maternal and child health services, services for tuberculosis and services for sexually transmitted infections and viral hepatitis. Tuberculosis is the leading cause of death of people living with HIV, accounting for one in three AIDS-related deaths; however, it is estimated that 49 per cent of people living with HIV and tuberculosis are unaware of their co-infection and are therefore not receiving care.

Access to HIV testing is a basic human right, and UNAIDS is calling for a global commitment to remove the barriers preventing people from testing for HIV, which include eliminating HIV-related stigma and discrimination, ensuring confidentiality in HIV testing and treatment services, deploying an optimal mix of HIV testing strategies to reach the populations most in need, integration with other health services, removing policy and legal barriers hindering access to HIV testing and treatment, expanding access to viral load monitoring in low- and middle-income countries and ensuring access to early infant diagnosis for newborns.The report demonstrated that implementing these measures would hugely advance progress towards ensuring that all people living with and affected by HIV have access to the life-saving services they need.