HIV/AIDS: Survivors’ stories of stigma, shame

0
300

World Health Organisation, WHO, in a report announced a drop-in new HIV infections by 37 per cent and Human Immuno-Deficiency Virus (HIV)-related deaths with 45 per cent, 13.6 million lives saved due to ART.

Stigma, discrimination endanger lives of people living with HIV(Opens in a new browser tab)

According to WHO, the achievement was the result of the efforts by national HIV programmes supported by civil society and international development partners.

In Nigeria, the case was not different, as the report of the National HIV/AIDS Indicator and Impact Survey (NAIIS) Result, launched in March by President Muhammadu Buhari in Abuja, showed that the burden of the disease has dropped from 3.5 million in 2005 to 1.9 million in 2018.

But does the report mean that all was well for hundreds of Nigerians who have tested positive to HIV? Sunday Vanguard writes that, despite this drop in prevalence, challenges persist as stigma and discrimination continue to kill more Nigerians rather than the disease itself.

Executive Director of UNAIDS, Michel Sidibé, said: “Whenever AIDS has won, stigma, shame, distrust, discrimination and apathy were on its side.”

Such has remained the fate of hundreds of Nigerians like late Felix Ukagha. Felix was full of life until he tested positive. He had dreams but never lived to fulfil the dreams. Why? According to his elder brother, Felix never wanted to die. He was determined to live until his status was leaked to outside of the family.

“When his status was kept within the family, he was ready to take treatment. But the moment everyone knew he was HIV-positive, people began to talk about it. He felt stigmatize and he decided to stop taking treatment. He rejected the drugs,” the brother narrated. Felix died after he took ill.

Felix is not alone. Although Adeola Ajetunmobi is a living testimony of treatment adherence, her experience at first was not palatable.

But her strong will to survive made her overcome the many challenges even from her family members.

Adeola was made to deal with discrimination, myth and superstition.

She was almost turned to an outcast in her father’s house.

“I suffered so much humiliation, so many sleepless nights. The humiliation didn’t get any better as I journeyed through rough roads for about two years”, the survivor said.

According to her, friends who should ordinarily be comforting her took to the streets as the announcers of her predicament.

“I had sleepless nights, boils all over my body and, for years, I was suffering and pus was coming out of my body. Bad news spread like wild bush fire”. The first inkling that people outside of the family knew about her situation came from her closest friend who sent her a text message: “I heard you are HIV positive.” She was made to sleep in the passage in her father’s house for two years, whether it rained or not, because of her AIDS status.

“Even my family and my blood relations stayed away from me up to the extent that they refused to sit wherever I sat. It was that bad. Anything I did then was a problem. None of them wanted to have anything to do with me”, she said.

“Each time people saw me anywhere, even in the church, they will pinch themselves and say, ‘Are you sure she is positive?’”. It was hell for her and people of her status.

“Taking treatment has become so hard for many people living with the virus and some have died untimely.”

Stigma is a big challenge even for children and adolescents living with HIV.

Many Nigerian children adolescents have schoolmates who no longer play with them after they discovered their HIV status.

Many are shunned by family members, peers and the wider community, while others face poor treatment in educational and work settings, erosion of their rights, and psychological damage.

Studies show that in 35 per cent of countries with available data, over 50 per cent of people report having discriminatory attitudes towards people living with HIV.

Studies also show that this limits access to HIV testing, treatment and other HIV services.

According to index documents of the experiences of People Living with HIV, in 2015, more than 70 countries were using the HIV Stigma Index.

Findings from 50 countries indicate that roughly one in every eight people living with HIV is being denied health services because of stigma and discrimination.

Reports also show that stigma and discrimination make people vulnerable to HIV.

Those most at risk to HIV continue to face stigma and discrimination based on their actual or perceived health status, race, socio-economic status, age, sex, sexual orientation or gender identity or other grounds.

Since the beginning of HIV/AIDS epidemic, according to WHO, 75 million people have been infected with the virus and about 32 million people have died of HIV.

VIRAL HEPATITIS: Bigger threat than AIDS, TB, malaria(Opens in a new browser tab)

But today, WHO report shows that Africa remains most severely affected, with nearly one in every 25 adults (3.9 per cent) living with HIV and accounting for more than two-thirds of the people living with HIV worldwide.

The report reveals that 37.9 million people across the globe are currently living with the virus, about 24 million are on ARV while a total of 14 million have the potential to infect other people.

Findings show that in Nigeria, a larger number of the grim statistics could be traceable to stigma and discrimination.

Confirming the findings, Director -General of the National Agency for the Control of AIDS, NACA, Dr Aliyu Gambo, said stigma is the biggest enemy preventing people from testing.

“HIV situation has changed. It has changed from a disease that kills to a chronic illness that you can manage, just like we are managing hypertension and diabetes”, Gambo said.

“As long as you take your drugs, as long as the drugs are suppressing the virus and wiping it out from your blood, HIV cannot lead you to infect another person. “It cannot continue to destroy your immune system or body defense, definitely, it cannot give you the bad outlook that it gave in the past. It will not show on your face, or your body. If it does not do that why discriminate?”

The NACA chief, in an interview, lamented that 30 years after, stigma and discrimination against people living with HIV/AIDS continues in the country, explaining that of the 1.9 million Nigerians living with HIV, about one million were on ARV, while about 900, 000 were either not aware they are HIV positive or have refused to access treatment which is free in the country due to stigma and discrimination.

“We are planning to deploy rapid self-test kits to Nigerians. We are planning to start with some special communities”, he said.

“The essence of knowing your status is to help yourself. Once you realise that you don’t have HIV, we will help you remain HIV-free for the rest of your life.

“But once you realise that you have HIV, we will help you control the virus in you in such a manner that it doesn’t show on your face or your body and affect your loved ones. Technically, we deactivate HIV in your body”.

Fear

The fear surrounding the emerging HIV epidemic in the 1980s largely persists today.

In Nigeria, HIV and AIDS are still associated with death.

In some cases, many Nigerians link it with behaviours that some people disapprove of like infidelity.

They think HIV is only transmitted through sex which is a taboo subject in some cultures.

Many Nigerians still think that HIV infection is the result of personal irresponsibility or moral fault that deserves to be punished.

Inaccurate information about how HIV is transmitted is widespread.

In a work carried out by the International Centre for Research on Women (ICRW), it is found that the possible consequences of HIV-related stigma include loss of income and livelihood, loss of marriage and childbearing options, poor care within the health sector, withdrawal of care-giving in the home, loss of hope and feelings of worthlessness, and loss of reputation among others.

Challenges

Speaking on the challenges on HIV response, the NACA DG said: “Yes, we still depend heavily on donor agencies. As we are talking, donors still pick about 80 percent of the bills.

“What government is planning, going forward, beginning from 2020, is that Nigeria will begin to absorb more in terms of funding of HIV and more in terms of putting more people on treatment and sustaining them on treatment.

“The challenges are always there. The challenges are stigma and discrimination. The challenges are people accepting to test to know their status and doing something about it.

US to support treatment of additional 60,000 PLHIV in Lagos(Opens in a new browser tab)

“The challenge of funding that is shrinking; funding that needs to come as much as we need it; funding that will be able to sustain our activities going forward”.

According to him, plans are underway to increase the number of Nigerians on treatment following the increase in NACA’s 2020 budget.

His words, “The President approved more money for NACA. Going from 2020, NACA will now put additional 50,000 people living with HIV on treatment on the bill of the Nigerian government.

“By next year Nigeria, will be treating 100,000 instead of the current 50,000.

Our record shows a million people are on treatment.

“Our estimates show 1,800,000 or 1, 900,000 are living with HIV in Nigeria. You can say close to 55 per cent of people living with HIV are currently on treatment.”

Burden of HIV

According to a NAIS report, from a large sample size of 225,000 persons taken from more than 97,000 households across all the local government areas of Nigeria, 1.9 million Nigerians are living with HIV. The survey shows that women aged 15–49 years are more than twice as likely to be living with HIV/AIDS as men (1.9 per cent versus 0.9 per cent).

It also shows that the difference in HIV prevalence between women and men is greatest among younger adults, with young women aged 20–24 years more than three times as likely to be living with the virus as young men in the same age group.

Among children aged 0–14 years, the data showed 0.2 per cent.

The report also reveals that states of the South-South has the highest burden of the disease with 3.1 per cent among adults aged 15 to 49 years.

Akwa Ibom tops the chart with a percentage of 5.5 while the lowest in the region are Bayelsa, Delta and Edo.

The region is followed by the North-Central with 2.0 per cent and Benue has the highest in the region and the lowest is Niger.

The result shows the South-East zone is third in the rate of prevalence in the country with 1.9 percent. South-West is fourth with 1.1 per cent, North-East fifth with 1.1per cent, while North-West has the lowest with 0.6 per cent.

The survey shows that almost half of the persons living with the disease in Nigeria achieved viral suppression.

Effects

According to UNAIDS and WHO, fear of stigma and discrimination are the main reasons people are reluctant to get tested, disclose their HIV status and take ARV.

One study finds that participants who reported high levels of stigma were over four times more likely to report poor access to care.

This contributes to the expansion of the global HIV epidemic and a higher number of AIDS-related deaths.

However, if the reduction in HIV prevalence in Nigeria is anything to go by, there is need to tackle the issue of stigma to stem late diagnosis when the virus may have already progressed to AIDS.

UNAIDS Executive Director said, “Every time AIDS has been defeated, it has been because of trust, openness, dialogue between individuals and communities, family support, human solidarity and the human perseverance to find new paths and solutions”.

HIV/AIDS: Kwara Dep. Gov. harps on regular medical check-up(Opens in a new browser tab)

In essence, there is a need to stamp out stigma and discrimination to encourage people living with the disease to have access to treatment.