In celebration of World AIDS Day, Nasaala Doreen, a Ugandan LGBTQ+ right activist and advocate for HIV treatment, shares the struggles they face as a person living with HIV, the current lack of support in Uganda, and the practical approaches for a better environment for HIV-positive people.

Image credit: Nasaala Doreen

Could you tell us a little bit about yourself and your career to date?

I am Nasaala Doreen, a 29-year-old Ugandan woman with 8 years of experience in HIV treatment advocacy work. I am an HIV activist and advocate for LGBTQ rights in Uganda and globally. I have been HIV/ AIDS positive since childhood. I learnt about my HIV status at the age of 1 when my mom boldly explained it to me. I am a proud mother of two sons, Iman Ali Abdallah, aged 8 years old, and Mubarak Ali Abdallah, aged 6 years old. Surprisingly, both my children are HIV negative due to my suppressed HIV viral load count at the time of their conception and were safely delivered in the healthcare centres. Due to my adherence to ARVs medicine, my HIV is suppressed, which means it’s undetectable and untransmittable. Also, because of my good adherence habit, my partner is HIV-negative and up to date.

Image credit: Nasaala Doreen

What is your experience with HIV/AIDS?

My experience with HIV/AIDS starts right from I tested positive for HIV /AIDS! I am proudly hosting and managing my tiny HIV guest, making it undetectable/untransmittable. It means I cannot pass my HIV to other innocent people. Taking proper ARVs medicine is very vital to me, which I do tirelessly every day.

The work I do in HIV treatment is counselling and guidance services that I render freely to HIV-positive living individuals across communities all over Uganda. I was also featured in advocacy videos demanding for viral load testing to be affordable, accessible and free for all HIV-positive living individuals worldwide. I am grateful to inform you that I succeeded in achieving the goal.

Today we've got various viral load testing machines in different regions, which is nothing like before in 2015, and it's free of charge for every HIV-positive living individual. It was all achieved through my Be Healthy-Know Your Viral Load video.

What are the misconceptions about people living with HIV?

Misconceptions about us living with HIV are as follows:

1. That we can't live for long, therefore, dying anytime.

2. That we can't give birth to children who are diagnosed HIV negative.

3. That we can't get married to HIV-free living persons.

4. That we don't have to be loved, rather we should be discriminated against and disconnected from society.

In your knowledge, what does your workplace do to ensure a safe and inclusive work environment for people living with HIV?

It's on a sad note to say that, in my experience, there's no step taken towards care and safety for people living with HIV/AIDS.

It's the reason why I had to quit my cashier job at a hardware store. We, HIV-positive individuals, were not given meals or breaks off from work; we worked overtime, no off days…and worst of all, no salary increment. The worst moment is when my boss said that she didn't want to work with workers who were HIV-positive because she feared them and couldn’t share working desks with them.

Without off days, it means that I had no time for ARVs refill, and without meals, I was straining my life and body.

No breaks and over-exploitation led to my physical fatigue. Due to the lack of rest and especially working under pressure, my health condition worsened. That was the worst experience I have ever had at work. So, currently, I am jobless, only volunteering in HIV treatment advocacy without funders and sponsors.

What do you think is the next course of action to improve conditions for people living with HIV in the workplace and wider society?

I think the following should be done to improve our lives as HIV positive living both at work and in the wider community:

1. They should facilitate them in terms of food and other basics during HAART Clinic refill days to motivate their adherence and hence improve their standards of living.

2. Each workplace should have ground rules against stigma and discrimination against people living with HIV.

3. Risk-populated areas like refugee resettlement camps and prisons should have well-facilitated HAART Clinics with food items like soya porridge, milk, rice, silverfish, vegetables and fruits to boost their immunity.

As a young mother living with HIV, I was once remanded at Luzira Women Maximum prison for defending LGBTQ rights and later on acquitted after 4 years of detention on remand. Life was hard for me in trying to adhere to my ARVs.

HAART clinics have no special care, no additional meals and no motivation on refill dates in terms of food items and basics, all prisoners could get 2 cups of maize porridge only once a day at 8 am, a single meal of posho and beans at 3 pm until the next day. As a counsellor and lead-peer educator in charge of inmates, I mobilised my fellow HIV-positive living colleagues and prepared a vegetable garden where we used to harvest green vegetables and shared them amongst ourselves on refill appointment dates.

I pray that there are good Samaritans and sponsors to partner with me in my Kick Aids Foundation project or Nasaala Aids Support Project-Uganda to give a helping hand to HIV-positive living prisoners all over Africa in terms of special foods to boost their immunity and motivate their adherence to ARVs medicine rightfully.

I also propose a grant of structure for my Kick Aids Foundation project and Nasaala Aids Support Project-Uganda to support indigent incarcerated people living with HIV/AIDS.

Lastly, my humble request is for sponsorship to attend AIDS 2023 conference that's coming up soon.

Join myGwork's World AIDS Day panel on 1st December to learn more about how we can better support people with HIV.