Prove You Had Hepatitis B — Then Watch Them Explain It Away

Living infected people are being placed in an impossible position.

First, they must prove that they contracted Hepatitis B decades ago—often when testing, record-keeping and medical understanding were very different. They are expected to locate old hospital notes, faded laboratory results and references buried inside incomplete medical files.

But even when those records contain medical notes confirming Hepatitis B, some people report that the IBCA medical assessment does not accept the diagnosis as it was recorded.

Instead, they say the evidence may be reinterpreted, downgraded or effectively “undiagnosed” on paper.

When a medical record is no longer treated as proof

If a person’s own doctors recorded Hepatitis B at the time, on what basis can a compensation assessment carried out decades later decide that diagnosis should no longer stand?

The original clinicians treated the patient, saw the available test results and recorded the diagnosis contemporaneously. An assessor reviewing selected historic documents many years later was not present and did not examine the person at the time.

A medical review should help interpret the evidence. It should not quietly erase a recorded diagnosis simply because the surviving paperwork is imperfect.

That is especially troubling when the scheme itself places the burden of producing evidence on the applicant.

“Prove you had Hepatitis B—but the proof may still be judged not to mean what your doctors said it meant.”

Why are some people not being offered the chronic route?

Another serious concern is whether some living infected applicants with a documented history of Hepatitis B are being denied—or not offered proper consideration under—the relevant chronic Hepatitis B category.

A person may have lived for decades with the consequences of infection, monitoring, fear, stigma and uncertainty. Yet if an assessor retrospectively concludes that their historical results do not meet a particular interpretation of chronic infection, the entire course of their illness risks being reduced to something temporary or insignificant.

Hepatitis B is not always a neat, straightforward condition. Markers can change over time. Records may be incomplete. Terminology used by hospitals decades ago may differ from today’s language. Infection may later become inactive or resolved, and it can reactivate under immunosuppression. None of that means the original infection never happened.

An absence of complete surviving laboratory data is not the same as evidence that a person was never infected.

Medical review or retrospective erasure?

There is an enormous imbalance of power in this process.

The applicant must prove an event from decades ago. IBCA can then commission a medical assessment which reinterprets the surviving evidence. If that opinion conflicts with the historical diagnosis, the applicant may be left trying to prove the diagnosis for a second time—this time against the compensation body itself.

That cannot feel trauma-informed to the person living through it. It risks turning medical review into retrospective erasure.

Questions IBCA must answer

- What evidence is required for a historical Hepatitis B diagnosis to be accepted?

- When medical notes explicitly record Hepatitis B, why might those notes be considered insufficient?

- On what basis can an assessor reach a conclusion that conflicts with a contemporaneous diagnosis?

- Are applicants told when an assessor has reached a conclusion that conflicts with their medical record?

- Do applicants receive the assessor’s full reasoning and an opportunity to challenge it before an award decision is made?

- Are all eligible living infected applicants being considered for the appropriate chronic Hepatitis B route?

- How does IBCA account for missing historic records and changes in testing and terminology?

- How are resolved infection, fluctuating markers and later reactivation considered?

This is not simply a disagreement over paperwork

For the people affected, this is deeply personal.

They have already lived through the infection, the monitoring, the fear of transmission, the stigma and the uncertainty about their future. Some have carried the diagnosis for most of their lives.

They should not now be forced to watch it disappear during a paper assessment.

If IBCA requires people to provide medical evidence, then contemporaneous medical evidence must be given proper weight. Where an assessor disagrees with a recorded diagnosis, the applicant deserves the full explanation, the evidence relied upon and a fair opportunity to challenge it.

A compensation scheme created because institutions failed infected people must not repeat that failure by rewriting their medical history.

You cannot demand that people prove their Hepatitis B—and then “undiagnose” them when they do.

— The Unheard Voice