Dialysis, Hepatitis and the Patients History May Have Overlooked

By The Unheard Voice

A prospective UK study of 20 dialysis units reported that outbreaks increased between 1968 and 1969, while the recorded attack rate rose to 5.3% among patients and 1.3% among staff. Researchers linked those outbreaks to what was then called Australia antigen, now associated with hepatitis B. (pmc.ncbi.nlm.nih.gov⁠)

The problem became serious enough for a national prevention and control programme to begin in 1970. Subsequent surveillance of more than two-thirds of UK dialysis units recorded a substantial reduction in hepatitis B following those measures. Among patients, incidence fell from 4.9% in 1970 to 1.4% in 1972, while among staff it fell from 1.3% to 0.4%. (pmc.ncbi.nlm.nih.gov⁠)

By 1973, researchers reported that hepatitis B incidence had fallen further, to approximately 0.3% among patients and 0.1% among staff in the units studied. They attributed that decline to the prevention programme. (pmc.ncbi.nlm.nih.gov⁠)

Published historical evidence therefore documents hepatitis transmission associated with British dialysis treatment.

The Edinburgh outbreak

One of the most closely studied outbreaks occurred in Edinburgh.

A later scientific review examined dialysis-associated hepatitis there over a period covering the 1960s and 1970s. Researchers identified hepatitis B but also described cases of clinical non-A, non-B hepatitis. (infectedbloodinquiry.org.uk⁠)

That terminology needs care. Hepatitis C had not yet been identified as a distinct virus, so “non-A, non-B hepatitis” was used when hepatitis could not be attributed to the viruses then identifiable. It should not automatically be interpreted as proof that every historical non-A, non-B infection was hepatitis C.

What it does demonstrate is that the history of hepatitis associated with dialysis was not confined entirely to hepatitis B.

Authorities responded

The danger was recognised nationally.

UK government guidance later cited the 1972 Rosenheim Advisory Group report, Hepatitis and the Treatment of Chronic Renal Failure, which addressed the prevention of hepatitis transmission within renal dialysis and transplantation services. (assets.publishing.service.gov.uk⁠)

Contemporary surveillance also recorded falling blood transfusion exposure among dialysis patients during this period. In surveyed units, average transfusion use fell from 7.6 units per patient-year in 1968–69 to 2.7 by 1972. (infectedbloodinquiry.org.uk⁠)

That matters because dialysis patients could historically have encountered blood-borne infection through more than one possible route. For any individual patient, determining the source of infection requires evidence specific to that person.

Then hepatitis C entered the picture

By the early 1990s, anti-hepatitis-C antibodies were being studied among haemodialysis patients across Europe.

The material highlighted by The Truth About Hep C refers to participating UK units in which anti-HCV prevalence was around 7% in the earlier study period and around 3% later.

Another figure is particularly striking. According to the European dialysis material reproduced on that page, in 1992 only 29% of UK dialysis units were testing most or all haemodialysis patients for anti-HCV for the purpose of the registry data being discussed. (thetruthabouthepc.org.uk⁠)

That does not prove that large numbers of infections were missed. It does, however, raise a legitimate historical question: how complete was Britain’s picture of hepatitis C among dialysis patients at that time?

There is also an important distinction around the figures themselves. The same source page suggests that a 7% prevalence rate could equate to approximately 2,500 infections annually.

The Unheard Voice is not adopting that calculation.

Prevalence measures the proportion of a population found to have a condition at a particular point or period. It does not, by itself, establish the number of new infections occurring each year. Without stronger evidence establishing incidence, we will not turn that percentage into an annual infection estimate. (thetruthabouthepc.org.uk⁠)

So where are the patients?

This is the question that interests us.

Not because every dialysis patient who developed hepatitis was necessarily infected through NHS treatment. They were not. Possible routes could include transfused blood, treatment-related exposure, transmission occurring elsewhere, or infection unrelated to dialysis altogether.

Individual cases must therefore be examined individually.

But people receiving renal treatment during the 1960s, 1970s and 1980s now face another problem. Many patients have died. Records may be incomplete. Diagnostic tests available today did not exist then. Terminology changed as scientific understanding developed.

That means some families may now be trying to reconstruct events that happened half a century ago.

What the evidence establishes — and what it doesn’t

The published record establishes that hepatitis outbreaks occurred within British dialysis units. Patients and staff were affected. National prevention measures were introduced, and hepatitis B incidence subsequently fell substantially.

Historical research also documented non-A, non-B hepatitis among dialysis patients. By the early 1990s, hepatitis C antibodies were also being identified among haemodialysis populations. (pmc.ncbi.nlm.nih.gov⁠)

What the evidence reviewed for this article does not establish is the total number of people in Britain who acquired hepatitis C as a consequence of dialysis treatment.

We should not invent that number.

But neither should the absence of a reliable number end the investigation. It should begin one.

Were you there?

Were you receiving renal dialysis in Britain during the 1960s, 1970s, 1980s or early 1990s?

Did a parent, partner or other relative receive dialysis during that period?

Were you a nurse, doctor, technician or other member of staff working within a renal unit?

Do historical medical records mention hepatitis, hepatitis B, hepatitis C, abnormal liver tests or non-A, non-B hepatitis?

The Unheard Voice would like to hear from you.

We are particularly interested in dates, hospitals, surviving medical records and firsthand recollections that could help establish what happened.

We will not assume how somebody became infected. We want to follow the evidence.

Because fifty years after these outbreaks, one question remains remarkably difficult to answer:

Do we actually know who everyone affected was?

Editorial and evidence note: This article examines published scientific research, historical material and government guidance. It does not allege wrongdoing by any individual or organisation and does not determine the source of infection or cause of death in any individual case. Historical terminology including “non-A, non-B hepatitis” is used in its contemporary context and should not automatically be interpreted as a diagnosis of hepatitis C. Where the available evidence does not establish a conclusion, we have stated that limitation.

— The Unheard Voice