On Friday, Uganda commemorated World AIDS Day, rededicating the commitment to get rid of HIV/AIDS by 2030. One of the people who believes this is possible is Elvis Basudde, the first prominent journalist in East Africa to publicly disclose his HIV status. After living with HIV for 21 years, Basudde’s story is worth listening to. This is the last part of our series about the HIV activist.

This is truly one of the best times of my life, and there are lots of reasons for this. One among them is that I am a journalist and at the same time living with HIV. I combine my HIV experience with journalistic expertise.

Basudde features in this film.

Since I go through every single day of my life with HIV, I have a story to tell each passing day. I have written HIV/AIDS-related articles in New Vision, effectively and with passion. I have also been hosted on different television stations. I am happy my stories and testimony have inspired many infected and affected people and changed their perception and attitude towards HIV.

After being empowered by my articles. They no longer take things for granted. As an HIV activist, counsellor and leader in my community, I sensitise the public on issues related to HIV. I use my life to demonstrate that ARVs work and can save lives. That is why I feel sad when people die of AIDS.

My journalism has helped me fight the stigma in communities. I suffered stigma and felt it hard when my fiancée walked out on me, leaving me on a ‘deathbed’ grappling with sickness. Stigma is the main reason why many people are afraid to seek medical treatment.

Dr Josual Musinguzi rewarding Basudde for his HIV fight.

Marriage, children

First and foremost, after my resurrection, I was able to get married and father two healthy children. It had never occurred to me that I could ever father children who are HIV-negative.

But, in 2003, after reading three stories of the Rev. Canon Gideon Byamugisha, I decided to try. Byamugisha documented his story of living with HIV in the 1990s.

The article

We are HIV-positive, but our daughter is healthy, gave his personal experience of bearing an HIV-free child, using the revelation of mother-to-child transmission (PMTCT). After getting back on my feet, I visited Byamugisha’s family to find out more about PMTCT.

In 2005, I married a young woman, who did not have a child, but had tested HIV-positive. Both of us were receiving ARVs and we sought advice from my doctor at the JCRC, Dr Geoffrey Kabuye, about our plans to have a child.

Kabuye carried out viral load tests to determine and advised that the risk of having a child with HIV was low. When my partner conceived, we followed all the precautions to decrease the risk of passing on the virus to our baby during pregnancy, labour, at birth and immediately after delivery.

CEO POMU Richard Sserunkuuma; Dr Mariely Shakur, a POMU supporter from the US and Basudde.

My wife delivered at Kisubi Hospital by caesarean section. We made sure that the baby did not breastfeed. We fed him on formula milk until he turned one year then we switched to cow milk.

The same procedure happened to the secondborn. My wife and I have succeeded in protecting our two children from the virus.

Leading groups

I am the chairperson of the Positive Men’s Union (POMU)-Uganda, a non-governmental organisation for men living with HIV. I have also served as a board member of National Forum of People Living HIV and AIDS Networks (NAFOPHANU), which is Uganda’s umbrella organisation of networks of people living with HIV.

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I am also one of the first graduates of the Positive Prevention Advocates (PPA) programme in Uganda. We go to schools, markets and in the community to sensitise the people about the dangers of AIDS.

I am also a Community Advisory Board (CAB) member at the Infectious Disease Institute (IDI), Mulago. During the 25th anniversary (since 1992) of Uganda AIDS Commission (UAC), I was listed in their magazine titled, The Noble Battle, among what they called the sung and unsung heroes in the fight against HIV and AIDS.

RELATED STORY: Basudde narrates what almost became his dying moments 

Regionally, I am the chairperson of Journalists Living with HIV/AIDS (JLWHA) Eastern Africa. It includes those from Zambia, Kenya, Tanzania, Ethiopia, South Africa and other countries.

Globally, I am the president of the scribe’s anti-AIDS body called the Global Alliance of Positive Journalists (GAPJ), comprising HIV-positive journalists. Our members come from the UK, Italy, Spain, Nepal, Pakistan, Vietnam and South Africa. Others hail from Sierra Leone, Swaziland, Bangladesh, Uganda and Kenya.

RELATED STORY: How Basudde defeated HIV for 20 years

We also have those from Tanzania, Cameroon, Haiti, Burundi, Ghana, Nigeria and Zimbabwe. The main aim of GAPJ is to ensure expanded and informed coverage on HIV and AIDS issues and also to see how we can use the media to influence our governments and world leaders to give priority to HIV/ AIDS.

My deputy is Rjiv Kafle from Nepal, Asia.

IAS membership

In 2020, I received a five-year membership to the largest global AIDS body, the International AIDS Society (IAS), which is granted to outstanding individuals who have made a notable contribution in the HIV fight in the community.

My voice joined the collective congress of policymakers, researchers, scientists and activists to shape the global HIV response.

As an IAS member, one of the benefits is to attend all the international AIDS conferences organised by IAS anywhere in the world. There are networking opportunities with the world’s largest cohort of HIV professionals through a variety of resources, including the IAS online Membership Directory and direct access to leading HIV experts.

I was also awarded an honorary doctorate by the University of Minnesota, USA, in appreciation of my HIV fight.

Featuring in video

I featured in a high profile video, Fire In The Blood, by Dylan Mohan Gray. The 2013 documentary depicted the challenges we faced then of accessing free ARVs in Africa. In April 2013, it won the Justice Matters award at the 27th Washington DC International Film Festival.

In May, the same year, it was declared winner of DOXA feature documentary at the DOXA documentary Film Festival. In October, it won the Friedrich-Ebert Stiftung prize for political film at Filmfest Hamburg.

In November, the video set a new record for the longest theatrical run by a non-fictional feature film in India. In the documentary, I featured with high profile personalities in the global HIV fight, such as Prof.

Peter Mugyenyi, the founder and former ED of JCRC – the clinic that saved my life; Dr Neorine Kaleeba, the founder of TASO; former US president Bill Clinton; Bishop Desmond Tutu, a human rights activist in Cape Town, South Africa and former president of South Africa, who is also a world icon Nelson Mandela (deceased).

The Fire In The Blood video told the story of how western pharmaceutical companies and governments aggressively blocked access to low-cost AIDS drugs for the countries of Africa and the global south in the years after 1996. It was shot on four continents and had an impact in the changes to ART access that occurred soon after.

My book

I am writing a book about my life titled, My Right To Fit In. I have so far gone halfway in the manuscript. I have documented everything I have done and shaming those who blamed me for disclosing my HIV status.

The book talks about how I have survived death seven times, including a nasty road accident, a bathroom fall, a plane crash and others. There is more about the stigma and discrimination I have fought, my awards and why, and also my non HIV contributions, such as the liberation of this country.

Advice

I call upon those who are already infected not to curse themselves or give up on life. Do not allow a psychological death. HIV is no longer a death sentence. You can still live a normal life; many of us are already living positively.

I have made more than 25 years! For those who do not know their status, it is important you test. What you do not know can hurt you. If you test negative, you get the motivation to stay negative. If you test positive, you start living positively. I advise those who ridicule, scorn and stigmatise people living with HIV, to stop.

There are also some people who call HIV a virus for the immoral and promiscuous. They think they cannot catch it. That is misjudgement because even innocent babies can be born with HIV.

None of us went out to look for it. I could have caught the virus just ahead of you. Tomorrow it might be your turn. Treat people living with HIV well and give them love and care. Stop that heartless habit of judging others.

For young people, know you are more vulnerable. Avoid unsafe sex by abstaining or using a condom. Never have a sexual relationship before testing for HIV. So many people look every-inch healthy, but may have the virus.

It is regrettable and shocking to learn that 575 adolescents and young women between 15 and 24 years in Uganda get infected with HIV on a weekly basis, according to the healthy ministry statistics.

UNAIDS, a UN body that oversees HIV management in the world, says adolescent girls (15-24) are one of the most at risk groups, who are getting infected much more than others in Uganda.

Can we end HIV/AIDS by 2030?

We can end AIDS in Uganda. We can ensure that nobody loses their immunity to HIV. That is my prayer and I presume it is your prayer too. The year 2030 is barely seven years from today. Uganda has registered remarkable achievements, demonstrated by the decline in HIV incidence since the early 1990s when it was so high.

I am optimistic that we can achieve a world free from AIDS. There could be some barriers to the response, but there are more prospects, judging by the statistics, strategies, trends commitment and the tools at hand. We are making steady progress.

Two years ago, we were one of the 10 countries to achieve the second 90 and the third 90 of the UNAIDS target. We enrolled 90% on ART and 90% of these achieved viral suppression. We were one point less to achieve the first 90, meaning 89% people living with HIV tested and know their status.

We have a number of prevention strategies that can easily be accessed, free of charge. They include ARVs, pre-exposure prophlaxis (PrEP), post–exposure prophylaxis (PEP), condoms, medical male circumcision and prevention of mother-to-child transmission (PMTCT) among many other interventions.

In 2020, more than 97% of HIV-positive pregnant women received ARVs to reduce the risk of mother-to-child transmission. This reduced new HIV infection among babies by 88%, which is good news.

Challenges

There are barriers we need to address.

• First, stigma against people living with HIV is still a major area of concern. The struggle against HIV can never be won without addressing stigma.
• Complacency is another major challenge threatening the gains against the pandemic. After years of pace-setting in the fight against HIV, Uganda lost her footing and the prevalence went a bit high.
• Today, people living with HIV do not manifest the symptoms that were obvious decades ago. The time when practically in every home, people used to mourn every other day in many areas, are no more. Before ARVs, the news of HIV diagnosis was a death sentence. But today, with all of the medications and treatment plans available, people are generally living longer lives and HIV no longer scares others.
• Finally, another major barrier is the funding for HIV in Uganda, which is heavily donor reliant. It also often comes with conditions that may not be in accordance with our national goals.

Awards

I have won a number of local and international awards, the latest being the US President’s Plan for AIDS Relief (PEPFAR) award for Editorial Leadership in HIV/AIDS Reporting, which I received in Zambia. I am also the first Uganda awardee of the Noerine Kaleeba-Breaking the Silence award, together with Dr Stephen Watiti, a New Vision columnist on HIV.

The award was established by Actionaid International (AAI) –Uganda. It was given to outstanding individuals, who broke silence on HIV at their work places.