Otiato GuguyuI have been to funerals, but this were a multitude burials rolled up in one. Each speaker called out a name for this annual vigil to mark the International Aids Candlelight Memorial, but each name was a personal story of loss.
A memory, sometimes two, per candle light as the National Empowerment of People Living with HIV in Kenya- NEPHAK met last week to remember their heroes, their spouses, their children, parents and friends lost to the worlds forgotten pandemic; AIDS.
I had the privilege of experiencing this annual ritual and it was profound, humbling and intimate. I was allowed into a space to photograph a candle light vigil to remember those who have lost their lives to AIDS and to honor those who have dedicated their lives to helping people living with and affected by HIV.
Not today death
It let me into spaces I had scarcely ever been to, in the room with men and women who had stared at death in the eyes and had said, ‘not this day’. I felt insufficient among unimaginable bravery over societal stigma, the trauma of an incurable disease and torment of side effects from anti-retroviral medicine.
Looking through a cameraman’s lens, I was invited to share in the emotions of my subjects as they lit flames and transformed them into a memory of a loved one like they were present. It was overwhelmingly emotional, I had to fight back tears as the loss was painful and shared.
The names and actions of those who had put up the good fight were remembered and celebrated. Personal stories of struggle and loss were shared, the beauty of struggle, and triumph of human spirit lived here.
Ordinary men women and children found themselves infected with HIV and spurned by the society. With medication being expensive many died preventable deaths and it took years of work on community and science to reduce HIV related deaths.
This work was done by men and women who had stood up and delivered global intervention that allowed people living with the virus to access medication. The very fact that I was standing among these men women and youth was a testament of their success, but what was the success.
When the world united to end HIV/AIDS, they believed that in a generation or two, the AIDS pandemic would be over, setting a date of 2030 to end it and designing financial programs that only cover the next six years.
“Everybody is taking about ending the epidemic in 2030 in fact our government has reduced to 2027 which is just around the corner. So we are worried what will happen to us, are we going to die are we going to get back to AIDS those picture we saw before,” Anne Rono, NEPHAK Nandi said.
Perils of success
Over the years, the success of intervention allowing people to live longer, healthier lives has pushed the memory of this pandemic into history replaced by more pressing priorities, new and emerging pandemics.
As the World prepares to declare the end of AIDS as a public health threat just six years from now and Kenya by 2027, the fate of the men and women who have survived thanks to HIV interventions is uncertain.
Development partners have just began conversations on how to transition out of the Global fund on HIV which facilitates access to ARV and the Kenyan government is also beginning to take steps to prepare for the end of the funding cycle. During his state visit to the United States, President William Ruto went to the CDC to make commitments towards sustainability of HIV response.
President Ruto witnessed the signing of MoUs between CDC and Kenya Medical Research Institute, the Ministry of Health and the U.S. President's Emergency Plan for AIDS Relief in developing a Sustainability Roadmap for Kenya’s HIV Programme and the joint proclamation for the operationalisation of the Kenya National Public Health Institute.
But these high level conversations need to include the voices of the people directly affected and the communities that in the end do the actual work.
“All of us have only one course that of sustaining the gains that have already been made, particularly in the provision of ARVs. Before we could not afford ARVs, they were very expensive and we are worried if you go back to that situation we might now be seeing most of our friends dying, not all of us can afford the medication,” Abner Mogire NEPHAK chairman said.
Ending HIV
During the 1990’s the visible impact of HIV/AIDS was stark, in our faces that everyone knew someone who had died from the condition. AIDS killed badly wasting its victims within a short time and unleashing trauma and stigma in communities.
It also exerted economic burdens cutting down the youth in their most productive ages and killing off family breadwinners, leaving behind uncared for orphans.
When victims and champions fought hard to get the government to act, they finally came round to and partnered with foreign governments and civil institutions to end the pandemic.
HIV has to be one of those conditions that is perpetually engulfed by misconceptions even by well meaning people.
I remember as a child being part of an Anti-AIDS club sponsored by Médecins Sans Frontières in Busia, where we learned and debunked the misconceptions that allowed the condition to spread and isolated victims from seeking medical help or benefiting from needed communal support.
The years of community education have yielded success in reducing the number of people who die from the condition and its general spread, it reduced the stigma and addressed structural bottle necks like the funding to access ARVs.
Ageing with HIV
But still the misconceptions persist. I was not a health journalist, and so I followed annual report on HIV just like anyone else. We reported the prevalence of HIV in the country annually tracking whether the number of people affected by the condition had reduced. But what did this really mean?
According to Florence Riako Anam co-Executive Director Global Network of People Living with HIV GNP+ given that the condition had no cure, what we are actually calling for is their death.
“In an epidemic there are only two outcomes, people are healed or people die. For HIV we do not have a cure we do not have a vaccine so for HIV for prevalence to go down it means we have died. The media does not get this when you say the prevalence is higher in Siaya, or Nairobi, they talk about it like it is a bad thing, but that means we are alive,” she said.
The whole idea that HIV could end shows just how the misconceptions around the conditions have persisted.
Globally, 39.0 million people were living with HIV at the end of 2022 with 1.6 million people living with HIV/AIDS and 1.1 million children who are orphans due to AIDS.
As treatment progresses and scientists develop ways to cut down the viral load to such low levels of being undetected it may not even be passed, means most of these people will live to their full age.
Ms Florence says in the global south where a majority used to die at a young age, the idea that many would live to grow old with the virus was never considered especially when setting targets to end the virus by 2027.
Nothing for us without us
As far back as 2021 while the world was focused on the Covid-19 pandemic, Ms Florence and her team at GNP+ were already thinking about what would happen at the end of the 2030 SGD era.
It is a conversation that is already happening at the UNIADS level which launched a global level plan in January which is supposed to guide country level sustainability plan and recently held a joint webinar with PEPFAR to chart a way forward post the 2030 deadline.
But these discussions are happening so far away from the real people affected by the interventions or lack of.
During the sessions some of the people living with HIV, expressed their frustrations with the medicine regimen and its side effects, and attitudes of society who now considered HIV/AIDS normal.
They said there is nothing normal about being on medication all your life that keeps you alive but gives you other diseases like liver failure and diabetes.
Ms. Rono said that she has suffered medication side effects, while other conditions came because the immunity is compromised. She said, she contracted diabetes and that most of them have other non-communicable diseases.
It is difficult to keep the regimen when you have no money to eat the healthy meal required to manage the drugs side effects or when your family is falling apart and your children are out of school.
“It is not just the drugs, there is the whole mental health, the socio economic aspects, do you have food, are your children going to school. Things happen and we stop taking the pill not because we are bad, but a lot is happening and then we get sick,” Ms Florence said.
They say people living with HIV are instrumental in the fight against it.
They are advocating for domestic resource mobilization because they know funding from the partners is reducing and are wondering when the partners will leave what will happen.
“We are advocating for people living with HIV be involved in the process, there is a slogan we say, there is nothing for us without us,” Ms. Rono said.
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Thank you so much for your thoughtful piece about an important, vulnerable yet powerful experience for us all. I truly appreciate this.