Is an HIV-free generation possible?

Zimbabwe is one of the countries worst affected by HIV/ Aids. At its peak in the early 2000s, one in every four adults (25 percent) was HIV-positive.

Tendai Westerhof, a former model, was among the first celebrities in Zimbabwe to disclose their HIV-positive status, and went on to lead a successful national campaign against the stigma associated with the disease, which for a long time stymied efforts to contain its spread.

When she made the bold decision to come out in the open in 2003, HIV/Aids was considered a death sentence; this was before ARVs became available, and about 2,000 people were succumbing to the disease every week. But Westerhof survived to tell her story.

FairPlanet spoke to Westerhof (56), who is the national director of the PAN-African Positive Women’s Coalition Zimbabwe (PAPWC-ZIM), about her role in fighting stigma around HIV/Aids.

FairPlanet: For many years, society considered HIV/Aids to be a shameful disease and ostracised those who were even remotely suspected of having contracted it. What prompted you to disclose your HIV status at a time when most people, especially celebrities like yourself, were in strict denial about it?

Tendayi Westerhof: I was prompted to disclose my HIV-positive status because I wanted to break the silence that drove the virus underground with its devastating effects.

As a former fashion model at the time who was also viewed as a celebrity, I realised the power of influence that celebrities and public personalities had. [It] was a way of leading by example towards breaking the silence of the personal experiences of living with HIV and to encourage the general populace to create that conducive environment that supports people living with HIV.

I disclosed my HIV positive status because I needed help on how to deal with my new life-changing condition since I did not have information to understand what an HIV positive status meant or the difference between HIV and AIDS. I had taken the decision to lead in the fight against HIV and AIDS and the personal disclosure was my strategy to be taken seriously from a lived experience.

I did not want to talk about "them" without first talking about myself. It’s a known fact that during that time in the early 2000s there was no treatment for HIV as, even as a country, we were all battling to learn about the AIDS pandemic, hence many people were dying needless deaths and this caused a lot of stigma and discrimination.

The lack of knowledge on modes of transmission for HIV also contributed to the stigma as the diseases was associated with mostly promiscuity and gay men. People were afraid to get tested for HIV or to disclose their status to family and friends as the diseases was presumed to be shameful. For celebrities, some were afraid to lose both their popularity and businesses.  

How did those people close to you take it when you made the bold decision to disclose your HIV+ status? 

The public disclosure of my HIV-positive status was met with mixed reactions. A few people, mostly close relatives and friends, sympathised with me, but most also lacked accurate information on the disease.  

After revealing your status, did you at any time, have moments of regret because of the way people reacted or started treating you?

I got a baptism of fire for the disclosure of my status. This is something that I had not expected. At one time I had so much self-stigma that I looked at myself as the most hated woman in the world because I had disclosed by status. There were others who felt it was a publicity gimmick on my part and called me an attention seeker. Some people were spiteful towards me and called me a liar because my marriage then was on the rocks. 

All kinds of hurtful things were said about me. I looked healthy and beautiful as a model and many concluded that because of my outside physical appearance I was making the whole thing up. As I mentioned earlier on, many did not know or understand the difference between HIV and AIDS and the meaning of an HIV-positive status, which was wrongly concluded to mean that one has AIDS, so they expected to see a sickly Tendai, who was wasted etc., but I looked totally the opposite. 

I would cry a lot, sometimes alone at night, but I never regretted my decision to come out in the open about my HIV-positive status. I just found myself being called an HIV and AIDS activist.

I have not changed, however I felt sorry for my children as they were subjected to a lot of stigma and discrimination at school and in the community. Their mother was referred to as the "AIDS woman" or "woman with AIDS" after many read about me in the press or watched and listened to me talking about HIV and AIDS on the television and radio.  

activism over despair

When you discovered that you were HIV-positive, how did you react? And how did you go about channeling your feelings towards a positive goal?

When I discovered that I was HIV-positive I was gripped with fear of the unknown. I thought I would just collapse and die any moment because of lack of knowledge. It was only after research and counselling that I learnt and eventually understood that to be HIV-positive was a condition that could be managed with antiretroviral treatment and that a person could live for many years without succumbing to AIDS - or may never succumb to AIDS.

I took the initiative to access treatment. At first, I bought the treatment from the private sector though very expensive. As the HIV pandemic evolved and treatment was becoming more available in the public health system, I was enrolled on the government HIV treatment programme up to this day, where HIV treatment is free to all those in need.

I was angry and to some extent bitter because society had rejected me for disclosing my HIV status. This led me to become a person with a very strong personality - hence I decided to fight for anything that I felt needed support towards ending HIV and AIDS. Many people were getting infected and interventions were necessary. The AIDS pandemic had been declared a national disaster. It needed political commitment, men and women living with HIV who were brave to take the bull by the horns through disclosure as a way to break the stigma, advocate for treatment access and stop new HIV infections.

My disclosure was a means of therapy and dealing with my situation at a personal level. I had to do something beyond my personal situation [and] founded the Public Personalities Against AIDS Trust in 2003, an organisation that was targeting celebrities, role models, public figures and others to take a lead in the fight against HIV and AIDS.

In 2004, I led a group of parliamentarians from the HIV portfolio in the Parliament of Zimbabwe who undertook a public HIV test in the glare of the media. Their actions were meant to show their commitment to (fight) this pandemic that had wrecked families and communities and to break the stigma to HIV counselling and testing. I went on to write and publish my first book Unlucky In Love - a story about my life and how the discovery of HIV had impacted me. I worked with many   communities around Zimbabwe creating awareness on HIV, started support groups for people living with HIV where there was peer support on treatment adherence and the whole aspect of positive living. 

Today I am the founder and national Director of Pan African Positive Women’s Coalition-Zimbabwe, a national network mitigating the unique needs of women living with HIV in Zimbabwe. I am also and international advocate fighting for the rights of women, girls, gender, economic empowerment and promotion of young women living with HIV in leadership spaces, addressing rights, gender equality, social / structural barriers that hinder access and the meaningful involvement of women living with HIV in the AIDS response.  

Eradicating stigma

How does stigma complicate the fight against HIV/Aids, or any other pandemic for that matter?

Stigma retards all HIV prevention efforts as it drives the virus underground with its devastating effects. Stigma prevents those considered as key populations from accessing health services such as testing for HIV, sexual and reproductive health service and even access to treatment. Punitive laws and other structural barriers also perpetuate stigma.

Stigma also results in gender-based violence on women and other key populations living with HIV.

There are many people out there, especially your followers on social media, who see you as a hero of some sort, because they believe that your boldness in opening up saved many lives by encouraging people to find out their HIV-status and thereafter make informed decisions. Do you view yourself in the same way?

I am humbled that there some out there who view me as a hero, however I want people to know that I am only a person trying to persuade and convince communities to accept and create that conducive environment for people living with HIV.

Gone are the days when people were ignorant and lacked accurate information on the disease, as a lot of awareness programmes have been rolled out in almost every community in Zimbabwe where people are being encouraged to get tested for HIV and know their status.

HIV services are being offered at primary health care facilities and in both the public and private sectors. There are also other players over the years and unsung heroes and heroines who have played a pivotal role in mitigating the negative effects of HIV and AIDS. I am also happy that I have been in this fight for over 20 years and seen the evolution and aging of the pandemic. Today as a country we boast a sharp decline in HIV statics among the 15 – 49 age group from over 21.7 percent in the year 2000 to 15.2 percent in 2010, and then to 11.9 percent in 2021. Furthermore 1,3 million people living with HIV are now on treatment and leading healthy lives.

From your own experience in the fight against HIV/Aids, do you sincerely believe that an HIV-free generation is possible?

An HIV-free generation is possible because as a country we have already surpassed the global HIV goals of the first two 95 95 95 targets: 95.6 percent of people living with HIV know their status, and 95.6 percent of people who test positive to HIV are on treatment. We are lagging on the third 95: [the percentage of] people on HIV treatment with suppressed viral load currently is 93.2.

As a country, our response to HIV/AIDS is guided by our own Zimbabwe National AIDS strategic plan that aims to end AIDS by 2030 - as this is the global goal in the AIDS response. [We] need to come up with targeted interventions to address gaps and leave no one behind, [particularly among] key populations - including people with disabilities, men who have sex with men, sex workers, transgender people, adolescent girls and young women and young people. 

More needs to be done in the elimination of mother-to-child transmission of HIV and male engagement. We need to reduce new HIV infections and target sub-populations and deal with issues of advanced disease progression, HIV and aging and using opportunities with new technologies in the response to end AIDS. 

As per the UNAIDS global strategy, there is need to end punitive laws, stigma and discrimination, gender-based violence increase testing services and ensure that the hard tor each population are targeted. Interventions [should] be led by communities and be community-centred. We need to address non-communicable diseases among people living with HIV.

The theme for World AIDS Day is 'equalise,' and at the country level we have extended it with 'Access, Empower, Inclusion, Opportunities and uphold human rights.'

I recognise and applaud support from the Global Fund, UNAIDS, Pepfar and other international development partners that have come to Zimbabwe, but there is need for domestic financing and the fulfilment of the Abuja declaration that 15 percent of the national budget would be channeled to health. We have a strong political commitment at the country level, therefore it is possible to end AIDS by 2030.

Image by National Cancer Institute.