Celebrating the long-term HIV survivors
Nnasaretha Kgamanyane | Wednesday June 26, 2024 12:59
Over the decades, the country has seen a number of brave men and women living with HIV going public about their HIV positive status and sharing their stories with the public in a quest to fight against the pandemic and also to find its cure.
Those were the days when going public about being HIV positive was extremely hard due to stigma that was very prevalent at the time. It is through the contribution of these brave soldiers that the country has reached a great milestone in its fight against HIV and AIDS.
Some of those heroes and heroines in the HIV field include the likes of David Ngele, Dipuo Bogatsu and Helen Ditsebe-Mhone who were the first people to publicly share their HIV statuses and paved the way for other activists to come out.
A day has been set aside to celebrate these early HIV champions, known as HIV Long Term Survivors Awareness Day.
In an interview when commemorating the day, Kennedy Mupeli, an advocate from Centre for Youth of Hope (CEYOHO) said it was important to discuss crucial issues that impact all of the long-term survivors. He pointed out that they have observed a trend where the voices of people living with HIV (PLWHIV) activists have become increasingly passive.
He said it was time they changed that narrative, adding that that PLWHIV must mobilise themselves to pressure for comprehensive policies that not only recognise them but also address the specific needs arising from long-term treatment and the emerging burden of Non-Communicable Diseases (NCDs).
“Over 50% of PLWHIV in care in Botswana are over the age of 40, highlighting the growing need for services that cater specifically to the challenges faced by ageing PLWHIV,” Mupeli said.
“This statistic underscores the importance of our advocacy.
“Furthermore, we need to reactivate conversations around the UNAIDS Greater Involvement of People Living with HIV/AIDS principle.
“This principle is crucial as it empowers us, ensuring that our voices and experiences are central to the policies that affect our lives.
“Additionally, our long-term living with HIV experiences can be utilised in many aspects of HIV programmes in Botswana, including prevention, anti-stigma activities, HIV cure research, and informing mental health programmes.”
Mupeli added that emphasizing the 95-95-95 global targets was also essential. The targets aim for 95% of people living with HIV to know their status, 95% of those diagnosed to be on treatment, and 95% of those on treatment to achieve viral suppression.
In all these targets, PLWHIV plays a critical role, from advocacy and education to supporting adherence and maintaining community health initiatives. Mupeli also emphasised that the need for advocacy was as urgent now as it has ever been. He added that long-term survivors must reclaim their position at the advocacy table to ensure that their experiences and insights lead to better support and solutions.
“Let us use this day to reignite our commitment to fight for our rights and well-being. Together, we can make a difference. Let’s stand united for a future where every long-term survivor is recognised, supported, and included in every conversation about health and policy,’ he said.
An HIV advocate and motivational speaker, Nono Simonn, tested positive for HIV in 2007. She only went public with her status in 2018 because in her journey of living with HIV, she realised that she needed support and people she could talk to about the condition without being judged.
She wanted to be that person to other PLWHIV, to be a voice to the voiceless, to give hope to the hopeless and mostly to sacrifice herself by sharing her journey of living with HIV so that others who are afraid to test could find the motivation to do so. She wanted to be a role model to the young and old to show them that they can live long even after HIV diagnosis as long as they adhere to their medication.
“Through my Page "Single Mothers Living with HIV", I believe it is visible the impact I have made through my teachings, motivation and counselling that I offer.
“My page has more than 60,000 followers and my live videos can reach up to more than 400,000 people worldwide.
“Our public health services have changed tremendously over the years as more people are encouraged to go and test for HIV, those on treatment know the importance of adhering well to medication, there are preventative measures put in place for those who are HIV negative such as Prep and PEP to prevent more HIV infections.
“Information about HIV is easily accessible and also services are widespread even in hard to reach places,” she said.
When she went public about her status, she said she faced a lot of stigma and discrimination because by then people did not understand HIV, saying some thought one could get infected by being promiscuous, which was not always the case.
She said challenges PLWHIV faced today are that when decisions or interventions are made, they are not included. She added that people still abuse PLWHIVs’ rights by writing or uttering discriminatory vulgar words about them especially on social media with nothing done about it. She added that stigma and discrimination is still alive in the country, noting it a big challenge as it hinders some PLWHIV from accepting their statuses, enrolling in treatment and living healthy lives.
Twenty-four year-old Bonosi Bino Kgotlaetsile, who has two HIV negative daughters, tested HIV positive in 2004 when she was pregnant with her second born. She disclosed her status to the public in 2012, at church then later on Facebook. She said she did it as a therapy for herself to accept the condition, live freely without thinking of what people say about her after finding out and as a sacrifice to save her beloved friends and family since most of them were sick and in denial while a lot had died of HIV but thought it was witchcraft.
“The other thing was spiritual, where I was asked to save people through the truth but had to start by disclosing my status first to the public before I could preach to them about the Gospel.
“It was ministered to me that it is better I tell people about something that is in me which is killing people and which people have kept as a secret and cannot be discussed in public,” she said.
When commemorating International AIDS Candlelight Memorial in Tlokweng recently, the Member of Parliament for the area, Thulaganyo Segokgo, who is also the Minister of Communications, Knowledge and Technology, said the nation’s stands as one, fostering compassion and resilience in the face of adversity, and championing love and solidarity for a future where every person living with HIV enjoys their right to a healthy and dignified life, free from stigma and discrimination. He also honoured people and friends who dedicated their lives to improving the quality of life of PLWHIV and those affected by the pandemic.
“This year we focus on the impacts of stigma and in particular self-stigma on PLWHIV.
“It is “the” time to reflect and inspire change, to enable PLWHIV to live freely without stigma and discrimination.
“It is a time to show our collective solidarity and compassion, love and care.
“By doing so we support them to heal, empower them to define a better life and see ourselves as one and not separated by the condition of being HIV positive.
“PLWHIV and their families often face significant challenges associated with persistent stigma and discrimination.
“These lead to feelings of shame, inferiority, hopelessness and lack of self-esteem.
“They feel isolated and have suicidal tendencies, that prevents individuals from seeking care and support in a timely manner,” he said.
He pointed out that the Global Stigma Index report highlighted that 84.8% of PLWHIV experienced self-stigma explaining that was echoed in the recent Botswana People Living with HIV Stigma Index 2.0 Study, which found high levels of internalised stigma. In that study, 30.3% of participants reported difficulty disclosing their status, 23.4% hid their status, and 13.9% felt guilty about their HIV status. Notably, he said males tended to report higher levels of stigma compared to females.
“By addressing self-stigma, we can help stop the perpetual negative narrative around HIV transmission, dispel myths and misinformation about life with HIV.
“By doing so we can collectively end stigma and discrimination associated with HIV, and help our people to recover, heal and live a decent life,” Segokgo said.