HIV treatment drugs.
One quiet
morning, some 35 years ago, one woman from Nakuru County got news that changed
her life forever. She had gone to take
an HIV test but was not prepared for the outcome. The HIV test results left her
terrified. She felt her world crumble.
It was not
the first time she had heard about HIV. After
all, she had lost her husband to HIV, but the test result showing her as
positive left her momentarily devastated. Within a flash, many things passed
through her mind, but then she drew strength from stories she had heard of how
others had lived with the virus. She immediately chose to join efforts by women’s
groups that she knew, in fighting stigma and living positively.
On December 1, the world comes together to commemorate World Aids Day, dedicated to raising awareness about HIV and Aids, honouring those living with the virus, and remembering those who have passed on.
For
decades, all over the world and even in Kenya, where thousands of individuals
still carry the virus since it was first reported in the country in 1984, people
have marched the streets to demand free treatment and to confront
discrimination and stigma.
In this
struggle, one totem has come to represent the struggle for an AIDS-free society
– the red ribbon.
On World Aids
Day, there are three people whose HIV positive life stories are a reminder that
living with Aids is no less of a struggle than one of hope and acceptance in
courage.
They are a
reminder of the fact that HIV is not an automatic death sentence, but also a
guarantee of hope and self-dignity.
In Kenya, the
National Syndemic Diseases Control Council says more than 1.3 million people
live with HIV and Aids. Women and young people account for the largest
percentage of new infections.
Despite
progress in treatment and prevention, stigma continues to threaten lives and
discourage testing.
The Nakuru
woman is now a mother of three children, and has lived with HIV for more than
two decades. She suspects she contracted it from her deceased husband, who had contracted
the virus in prison. “I couldn’t believe it at first,” she cried.
“I
was terrified, I was furious, and I was humiliated. I was so horrified in my
head to the point of just giving up on life because I thought everything was
really over,” she adds.
Through
therapy and medication at the Nakuru Level 5 hospital, she regained strength
and acceptance. She now runs a peer support group for women recently diagnosed
with HIV.
“I use my
story to remind them that life goes on,” she says. “HIV doesn’t define who you
are.” Her group meets weekly to discuss adherence to treatment, nutrition, and
self-esteem. I again found the courage to live. She survives to leave a mark
on others and to inspire others to live and to dream. “I want people to understand
that if you are HIV positive, you don’t die,” she smiles. “You just
live differently with a purpose.”
The
Ministry of Health has shown that such community-based support programmes have
helped improve antiretroviral therapy (ART) adherence by 40 per cent in the
last five years. Stigma levels have also declined, especially in urban areas
where awareness campaigns are stronger.
Dr Peter
Mwangi, a counsellor and HIV awareness advocate at the Kenya Network of Women
with Aids (KENWA), says stigma is still one of the biggest obstacles in rural
Kenya.
“People fear discrimination more than the
disease itself,” he explains. “Many delay testing or skip medication because
they don’t want to be seen collecting drugs at clinics.”
Dr Mwangi
believes education is key. “When people understand HIV as a manageable
condition, they stop associating it with shame,” he adds. “Our focus is now on
mental health, family support and empowering patients to speak openly.”
Another advocate, who is 23 years old, represents a
different face of HIV in Kenya. Born with the virus, he has never known life
without medication. Growing up in Kisumu, he kept his status secret throughout
primary and secondary school, fearing rejection from his peers.
“I remember sitting in a biology class when we
learned about HIV,” he recalls. “The teacher spoke about it like it
were a death sentence. I felt like everyone was staring at me, even though they
didn’t know.”
It wasn’t until he joined the university that he found the
courage to disclose his status. At the university, he connected with other
young people living with HIV through a student support network. “Meeting
others like me changed everything,” he says. “I realise I wasn’t
alone, and I didn’t have to hide anymore.”
Now a youth ambassador with the Kenya Aids NGOs
Consortium (KANCO), he travels to schools and universities across the country,
educating young people about prevention, testing, and living positively with
HIV. His message is particularly powerful for young adults who make up a
significant portion of new infections.
“Young people today have access to better treatment
and information than my parents’ generation did,” he explains. “But
stigma still exists, especially in relationships. Many young people living with
HIV struggle with disclosure to partners or fear they’ll never find love.”
Back in
Nakuru, the mother of three continues to live with purpose. Her children, all
HIV-negative, are her biggest motivation. “I want them to see that strength is
not in hiding,” she says. “It is in living honestly.”
Many people fear discrimination more than HIV itself.
Her
journey reflects the theme Beyond the stigma. It reminds society that HIV is
not a death sentence but a call to compassion, education and action. For
thousands like her, living positively means more than survival; it means
reclaiming dignity, one day at a time.
In
Nairobi, a caregiver of a mother who is HIV positive with a mental condition reveals
how her mother lived in stigma for over 10 Years. Miriam (not her real name)
recalls how she used to wonder why her mom kept going to Coptic Hospital for years,
claiming she was just going for regular check-ups.
One day, her mother went missing, only for Miriam to be called from Coptic and be
informed about her mom’s ongoing clinics that she had never missed for 10
Years.
That is
the day Miriam’s world darkened. She couldn’t believe that her mother had been
fighting this monster alone for that long. She recalls how she called her
brother to inform him, and he cried aloud, not believing all those years the
mother kept it a secret.
Considering
her mother’s mental condition (dementia), it is a secret that they have kept
within themselves (siblings) to protect their mother to the grave. Her mother’s
condition has improved, and the viral load is undetectable.
However, Miriam has to take her to the clinic every
six months for viral load tests as well as ARVs refills. This has become hard
since the mother is mentally challenged and uncontrollable. The psychiatrist ruled
out any suggestion that the virus could cause dementia.
‘Irene,
can you imagine your mother carrying such a burden for over 10 Years, keeping it
to herself? It is such a heavy load that I wish and I pray that one shouldn’t
be accustomed to it for fear of judgment and rejection. Look where it has landed
us. It led to severe depression,” Miriam concludes with a sigh.
Ongoing
research highlights that stigma and discrimination remain significant barriers
to quality life and effective care for people living with HIV/Aids.
According to a 2021 study led by Galit
Zeluf Andersson, despite
advancements in HIV treatment and expanded access to ARVs, stigma leads to
delayed testing, poor treatment adherence and psychological harm such as
depression and anxiety.
This
results in worse health outcomes and accelerations. Studies emphasise that
addressing stigma requires comprehensive multi-level interventions that are
beyond healthcare settings.
Effective
HIV/Aids stigma reduction requires holistic approaches addressing social,
psychological, legal and healthcare dimensions with active participation of
people living with HIV. Enhancing
quality of life and social inclusion with PLWHA goes beyond reducing negative
attitudes, alongside efforts to protect their privacy and rights in healthcare
and research environments.
Alice Maina and Alvin Mwangi contributed
to this article.