Living with HIV: Your Treatment Experience as Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

HIV treatment has changed beyond recognition: one tablet a day, an undetectable viral load, a normal life expectancy for many. What has not changed as much is what people live with around it: side effects over decades, ageing with HIV, other conditions, stigma, the practical reality of taking a medicine every day for life. Research on long-term treatment and on living well with HIV needs that experience, joined to the test results, and only people living with HIV hold it.

How many people live with it

UNAIDS reports that 41.0 million people globally were living with HIV in 2025, and that 1.2 million people newly acquired HIV in 2025.

The records worth keeping

The WHO's consolidated HIV guidelines describe the tests and treatment that leave records:

• A CD4 count at the start: baseline CD4 cell count testing should be performed to see whether HIV has advanced.
• Viral load tests: by six months, at 12 months and then every 12 months thereafter once treatment is established. A run of results shows how well treatment works.
• The treatment itself: a dolutegravir-based regimen is recommended as the preferred first-line regimen. Your prescription history records every change and why.
• TB preventive treatment for many adults, as part of a comprehensive package of HIV care.

If you do not have your results, ask your HIV clinic for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete HIV story with the records the guidelines list comes to about $65 per licence on the benchmark today. Every line and its source is on the HIV page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

Private by design

An HIV status is among the most private facts there is. Nothing identifies you in what is shared: no names, no place finer than a country, no exact dates, and you read the de-identified summary before anything goes anywhere. You decide what to tell, and you can withdraw at any time. How de-identification works, and what it cannot promise.

Start your story, or read what your health data is worth first.