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Uganda on the road of Establishing HIV/AIDS museum

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Have you wondered how the story of HIV in Uganda might be visualised, or what the narrative, artifacts and archives of the epidemic looked like over the years? There are some people, especially the younger generation, who might argue that HIV is a myth, because they do not know the devastation it caused since its discovery in 1982.

The Uganda Population Based HIV Impact Assessment (UPHIA2017) indicates that the prevalence of HIV among Ugandans aged from 15 to 65 is 6.2%, while the rate among children aged 0-14 is 0.5%. There has been a shift in the trend of the epidemic from younger to older individuals.

 Launch of the museum

Today, the HIV and AIDS Museum, the first of its kind, will be launched in Uganda, courtesy of Irish Aid. The organisations behind the project include The Ugandan Academy for Health Innovation and Impact (UAHII), based at the Infectious Disease Institute (IDI), in partnership with The AIDS Support Organisation (TASO), Uganda AIDS Commission (UAC) and Africa Heritage Consulting.

According to Dr Christine Ondoa, a member of the advisory board of the Ugandan Academy, the museum will be launched under the theme, Visualizing HIV: An exhibition of the past, present and future in Uganda. Over the next year, this will travel around Uganda and then be permanently exhibited at TASO.

“Through showcasing materials collected over the last 30 years of the HIV response in Uganda, this exhibition seeks to bring together research and lived experiences to showcase the many textures of HIV advocacy and outreach since the disease hit Uganda,” says Ondoa.

The museum was the idea of the executive director of TASO, Dr Michael Etukoit. He raised the idea last year at the organisation’s 29th anniversary celebrations. Etukoit believes that if Uganda loses the history of an epidemic like HIV/AIDS, we shall have lost a great opportunity.

As a country badly hit by the AIDS epidemic, this is a part of our history, it cannot be wished away. “At a time when the world has progressed technologically, this epidemic is over three decades old. Today, people living with HIV/AIDS do not manifest the symptoms that were obvious 34 years ago,” he says.

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“The time when practically every home was mourning the death of a loved one in Rakai, which suffered the most devastating effects of AIDS, is slowly becoming history, as many people living with HIV today are living positively,” Etukoit says.

He says this can be attributed to Uganda’s record as a global leader in the fight against HIV and behind this success are efforts and interventions that need to be documented.

Why the museum

Etukoit says in the course of the epidemic, people of all categories, including scientists and politicians, have tried every imaginable method in science, culture and in public health to contain it.

“In the process, we have all learnt a lot; what to do and what not to do. Literally, everything has been piloted in ending the HIV epidemic. There was a time when people with the disease were quarantined and not allowed to travel to certain countries.

“In the over 35 years, a lot of learning has taken place and that information needs to be preserved jealously for posterity;

For people to learn what it took to contain the epidemic,” says Etukoit.

He adds that in the course of learning, some theories of public health which have been studied, but never practiced, will be revealed for the world to practice or test to find out if they work and how best they can perform.

“Preserving this information on HIV could help the world manage other serious epidemics in future, in a much shorter lifespan than it has taken us with HIV because these practices will still work for another public health challenge,” explains Etukoit. He says they will document the best practices that contained the HIV epidemic.

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Does a museum mean HIV is history?

Establishing an AIDS museum does not mean HIV will be history. Etukoit says there are many reasons why there is need to establish the museum. After six years of World War II (1939- 1945), a museum was set up. “But HIV/AIDS has been here for over 30 years — the very reason to establish the museum to preserve information. It is not necessarily about the end, but there are lessons to learn, particularly because it is a very long timeframe.”

 

For example, the motherto-child transmission of HIV was the second commonest cause of transmission in this country, at around 25%. But there is now evidence that we have contained it. There are many other interventions, including antiretroviral drugs for containing the epidemic, he says.

“We do not have to wait until there is nothing for us to begin preserving. If where we came from is not preserved, it can easily be forgotten. We are optimistic that the end is around the corner, at least as an epidemic,” says Etukoit.

“There is also documentation on what used to happen and practices that worked in the past, which we no longer use.

“And when we compare the level of stigma then with that of today, there is a big difference. Sometimes stigma exists and people do not even notice it. Establishing a museum will help people understand what happened at the onset of the epidemic,” he added.

Materials that have been archived over the years will be displayed at the museum. Art pieces and pictures displaying TASO activities and founding members, images of the earlier victims, as well as books and other collections that were written about the epidemic.