A GNA feature by Linda Naa Deide Aryeetey
Grace, a 41-year-old lady who contracted HIV and AIDS about two decades ago and thought then that she will die too soon, is still very much alive today, healthy, strong and living a fulfilling life.
In March 2003, Grace, who is now an administrator working in a reputable institution in Ghana, suddenly fell ill and was rushed to the hospital, where she was diagnosed with HIV after having received a number of drips in one day.
Grace recounts how her whole world came crashing with all her dreams and hopes shattered, when she first got to know her status at the prime age of 23.
“The first two days of getting to know my HIV status was disappointing, and it was very difficult for me to come to terms with it. I wasn’t talking to anyone. All I did, was only trying to figure out why me, and how it all happened. All I did was to stigmatize myself each passing minute,” Grace narrated.
She said her self-stigma – her own negative attitudes towards herself because of her medical condition – deterred her from reaching out to anyone, not even a medical facility, for help.
Many people living with HIV and AIDS have to deal with such self-stigma in addition to facing persistent stigma in wider society. Many are reported to have suicidal thoughts as a result.
And these forms of stigma, and the resulting discrimination, have proven to be a key barrier to accessing healthcare services, which are crucial if people living with HIV are to lead productive and fulfilling lives.
Eventually, Grace got in touch with the Wisdom Association, an HIV and AIDS help and counselling group at the Korle-Bu Teaching Hospital, where she subsequently got all the necessary information and the right assurances to weather the storm.
She said coming in contact with the Group brought back her self-esteem and enabled her to face life and the reality of living with HIV.
It also opened up economic empowerment opportunities for her, and she even became a facilitator, who provided counselling and training support to others in similar situation.
Grace tells the Ghana News Agency (GNA) that it’s been an emotional roller-coaster for her, living with HIV and AIDS for a long time now in a much-stigmatized world.
“There are very down moments and there are times when I feel okay as well,” Grace said. “There are even instances where other people’s stories were worrying and scary to me”.
Although there is no cure for HIV and AIDS currently, strict adherence to antiretroviral drug regimens (ARVs) can dramatically slow the disease’s progress and prevent complications.
Presently, medical treatments for HIV and AIDS have evolved over the years, people living with HIV, even including Grace, sometimes take “drug holidays”, because they say they feel tired of taking medication every single day to ensure viral suppression.
“I wouldn’t believe anyone who would say that he or she has never missed a pill, because drug adherence is difficult and a tight work schedule, or some activities during the day, could make you miss a drug,” Grace said.
However, she said that over the years, as she kept reading and learning more to improve her knowledge about living with the virus, she discovered that contracting HIV does not have to be a death sentence.
Globally, HIV and AIDS continues to be a major public health issue, despite efforts and commitment to stopping new infections.
An approximate number of 37.6 million people across the globe lived with the virus as at 2020, according to UNAIDS, the UN programme working against HIV/AIDS. Of these, 35.9 million were adults and 1.7 million were children below 15 years old.
In Ghana, about 350,000 adults and children are living with HIV, according to UNAIDS.
Many have to deal with stigma and discrimination all the time.
Mr. Kofi Mawena Diaba, Program Manager of Ghana-West Africa Program to Combat AIDS and STI (WAPCAS), said stigma against people living with HIV and AIDS (PLHIVA) was a sensitive issue and most of the time actions and even inactions could send negative signals, making them feel unwanted and discriminated against.
Stigma and discrimination persist in Ghana despite numerous interventions geared towards it, mainly because people continue to tag HIV as a moral issue affecting “promiscuous and immoral people”.
He explained that stigma has mostly got to do with the perception of the person who feels stigmatized, and often people who may be perceived as stigmatizing them may not really be aware of their impact.
“Not all persons living with HIV and AIDS have been able to grow out of the self-stigma, statements like ‘this person got HIV because they deserve it’, prevents PLHIVA from being bold enough to stand their ground in the face of real stigma, which makes it uneasy for them to go places, access healthcare, causing them to withdraw gradually,” Mr Diaba said.
Last year, a person with HIV and living in the Bono-East region of Ghana, faced major stigma when a neighbour started spreading talk of her medical status in the community, and this made her feel terrible as people started pointing at her.
Mr Diaba said WAPCAS, however, managed to seek justice for her, and the perpetrator was fined about GHS22,000. The action taken by the court empowered the woman living with HIV, who now feels free to go for healthcare services knowing that no one would use her condition against her.
He said such support and actions could help to improve service uptake for people who need it and who are otherwise put off from seeking help or visiting health facilities because of stigma and discrimination.
Mr Diaba said addressing stigma and discrimination requires behavioural change and must be done consistently. People must hear the message against stigma and discrimination everywhere, in order to get accustomed to such change, and a lot of funding is also needed to take this change forward.
Dr Stephen Ayisi Addo, Programme Manager for the Ghana National AIDS Control Programme (NACP), said self-stigma and the fear of being stigmatized, caused people to live with HIV in secrecy and without accessing healthcare.
He said although accessible antiretroviral therapy had offered hope and encouraged people to go for testing, stigma remained a barrier to testing even at places where treatment was readily available.
Like Grace, there are many other people living with the virus who are very productive and work hard to contribute immensely to national development. By receiving treatment and medical care they retain their capacity to work, have children or even own businesses and estates.
As Grace, disclosed, many people living with HIV and AIDS prefer to seek treatment at prayer camps and from traditionalists, and such acts are said to cause persons who contract the virus to default in medical care and affect their quality of life.
“HIV is not a death sentence, thankfully there is a lot of change in information, once you have HIV you can be on treatment and eventually become virally suppressed and (not transmit the virus),” Grace said cheerfully.
She said the Government could help to support people like her much better than it was doing now, by increasing and promptly releasing its counterpart funding – money which was added to funds from the Global Fund to ensure consistent supplies of ARV drugs to PLHIVA and curb incidents of drug shortages.
Grace also said tax on HIV medication was also a barrier to accessing HIV medication in Ghana, and this must be removed urgently as additional costs put lots of lives at risk.