Living positively and loud to fight HIV stigma

Wednesday, March 22nd, 2023 09:02 | By

When Agnes Moracha learned that her daughter, Doreen Moraa was HIV positive, she decided to keep it a secret. Then, her daughter was eight years and she feared she was too young to cope. She knew she had passed the virus to her little one through mother-to-child transmission.

However, she could not keep the secret from her daughter for long. In 2005 when Doreen turned 13, she disclosed the information for her to start her medication. This was when antiretroviral (ARVs) drugs became freely available in the country. Apart from the disclosure, she also advised her not to let people know of her status.

“When she was diagnosed with HIV, I could not afford to buy the medication. HIV medication was expensive and only the rich could afford it. That is why she didn’t start her medication immediately after the diagnosis was made,” she says.

She recalls how raising Doreen was challenging because she was a sickly child. Even when ARVs were offered for free, they were forced to travel to either Kenyatta National Hospital or Kisumu County Referral Hospital to get them. At one time, she was advised to give Doreen up for adoption or drop her at a children’s home, but she refused. Financially, it was challenging as she was always sick. Stigma from relatives also meant zero to little psychosocial support — it was mostly her, her husband, and the child.

Turning point

To avoid HIV–related stigma, her daughter lived with her HIV status secret until she completed college. In 2011, she fully understood what it was like living with HIV and didn’t like the idea of taking medication for life and she got treatment fatigue. She sought alternative treatment such as visiting the famed Tanzanian Babu wa Loliondo and even stopped taking ARVs for two years. Opportunistic infections including pneumonia, herpes zoster and TB made her go back to taking medication.

One day in 2015, she was watching television, when a story about a Zambian girl who had faced stigma was aired. After watching that story, she decided the time was ripe to fight stigma by going public about their status. Upon discussing this with her, Doreen went public with her status via a Facebook post. She also reached out to a media house and she was given an opportunity for both mother and daughter to share their story.

Though this was a major milestone for them, it didn’t sit well with their relatives. Everyone except her late husband was negative about the public disclosure. But this reaction never silenced her. 

Since then, Doreen has been a HIV positive advocate using several national, continental, and global platforms. She boldly addresses stigma, discrimination, and other topical issues related to HIV and Aids. She has taken part in and still takes part in several international campaigns.

Normalising the conversation

“After that interview, Doreen decided to look for more opportunities to tell her story. Different media houses gave her the platform. People living with and affected by HIV also started reaching out to her, telling her how they needed people to speak to. That is when she decided to ensure that the conversation was normalised at all costs. That marked the start of her advocacy work,” she shares

The family finally accepted her move after losing someone close to them due to denial and HIV-related complications. This is when they appreciated her work because by then, she had started to gain a large following on social media for amplifying the HIV messaging.

Moracha shares how even though her daughter’s disclosure is something that has allowed her to become a voice for the voiceless, at first she never foresaw her gaining much publicity. Even her acceptance to disclose her status to the public is something that she never expected.

And as a mother, has she ever blamed herself for transmitting the virus to her? Moracha says that she has never blamed herself because she also didn’t know she was positive until she was diagnosed. She reveals that for a while, she didn’t accept that her little girl got HIV from her until she got tested and confirmed she was positive. After the confirmation, that is when she realised that her daughter needed her and she had to accept her status and her daughter’s. 

Towards a stigma-free society

“Living positively publicly, is not because I want to be pitied, but because I want to give people living with HIV hope,” Doreen shares. 

However, some people including family members say she is paid to live publicly with HIV and have been asking her for money. This is something that has affected the family by creating some sort of stigma from strangers.

“My hope and prayer is that one day, she will start a foundation to support orphaned and vulnerable children. To show them love and acceptance and create a safe space for them that is stigma-free. I also hope she reaches out to people across the world. I believe things will work out well for her advocacy work,” Moracha says.

Her advice to parents raising HIV-positive children is that this is a situation that needs acceptance and love. They should also ensure that the children adhere to medication and get psychosocial support as well as be close to them. 

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