HIV’s Unspoken Financial Legacy

A reflection by Pholo Ramothwala

AIDS denialism. Children growing up without parents. Fractured families. One of the highest HIV prevalence rates and AIDS-related deaths in the world.

These are the histories that have been documented. But they are only some of the stories.

Many chapters remain hidden because people cant bare to allow themselves to go back there. I am thinking of people who quit their jobs, those who were excluded by financial systems, and those who gave up on education or personal development altogether.

In my life, I have witnessed pensioners having to care for their daughters and sons while they were dying from AIDS. Elderly grandparents suddenly had to carry the full financial burden of households they never expected to support again. Where there were no grandparents, orphaned children were forced to become adults, finding ways to survive financially while still children themselves.

Fast forward to today, and when I look back, I see what HIV also left behind, a less visible, but just as enduring, financial legacy being carried by long-term survivors. Many of us are only now confronting this reality later in life, as we try to make sense of futures we were never expected to reach.

For long-term survivors, the question of money was never separate from the question of survival.

In the early years of the epidemic, planning for a career, retirement, or a child’s tertiary education felt unrealistic, not because of irresponsibility, but because longevity was uncertain. There was a strong perception that life expectancy was limited and that career opportunities where one could be openly HIV positive, without fear of discrimination or job loss, were extremely limited. Career trajectories were disrupted or cut short. Some people left their jobs voluntarily, believing there was little point in long-term advancement. Others were unjustly medically off-boarded, removed from the workplace under the language of risk and incapacity.

Many of us found ourselves in activism. The fight for access to treatment, dignity, and life itself became the work. That activism changed history. But it did not build financial security. It sustained life, not livelihoods. Survival took precedence over accumulation, stability, and long-term planning.

At the same time, financial systems reinforced exclusion. People living with HIV were categorised as risks. Life cover was denied. Disability insurance was inaccessible. Home loans were refused, not because of affordability, but because protection products were out of reach. I experienced this first-hand when a bank declined my home loan application because I did not have life cover, cover I could not obtain because I was living with HIV.

For many, economic stability depended more on timing than choice. You were considered “fortunate” if you tested positive after securing permanent employment and even then, that security was fragile in some sectors, often tied to whether employers conducted routine HIV testing.

Today, much has changed. Treatment is effective. HIV is more normalised. Public conversations are easier. This progress matters. But it came at a cost, borne by long-term survivors who absorbed stigma, exclusion, and economic consequences so that today’s normalisation could exist.

As this generation ages, the unresolved questions are becoming harder to ignore.

What does justice look like for long-term survivors when we talk about financial wellness, ageing, and dignity? What does life beyond survival truly require?

Is it too late to do something for some of us? I don’t believe so. But the solution lies in an organised and intentional approach, one that recognises that moving beyond illness is not only about health outcomes. It is about restoring agency, rebuilding economic dignity, and creating pathways for people to plan again, often for the first time.

Because surviving HIV should never have meant a lifetime of financial punishment.