A Book for the Whole Community — So Where Was Hepatitis B?

Thank you to the Hepatitis B community member who sent us the article and brought an important issue to wider attention.

The Hepatitis C Trust reported that a delegation of infected blood groups and charities hopes to hand Andy Burnham a book of handwritten letters from members of the community. Those letters describe decades of illness, bereavement, trauma and injustice, and ask him to help finish the fight for justice.

The letters are powerful. Every person who contributed deserves to be heard, and nothing in this article takes away from their testimony or the work involved in bringing their words together.

But when an initiative is described as representing the infected blood community, it is reasonable to ask who was invited to take part—and who was not.

Where was Hepatitis B?

We have been told by a Hepatitis B community member that Hepatitis B representatives were not invited to participate in presenting the book to Andy Burnham.

The Unheard Voice has not independently seen the invitation list or correspondence surrounding the delegation. Those organising it are therefore invited to clarify who was approached, how representation was selected and whether Hepatitis B organisations or representatives will be included.

But if the account is correct, the concern is serious. People infected and affected by Hepatitis B would once again have been excluded from something presented as speaking for the whole community.

If an appeal speaks in the name of the whole community, the whole community should be able to see itself represented.

A serious illness that is still minimised

Hepatitis B is not a minor footnote to the infected blood scandal. It is a viral infection of the liver that can be acute or chronic. The World Health Organization states that chronic Hepatitis B places people at high risk of death from cirrhosis and liver cancer.

Yet people with a history of Hepatitis B repeatedly describe their infection being played down, misunderstood or treated as less consequential. Some report difficulty obtaining recognition when old records are incomplete. Others say their diagnosis has been reinterpreted during compensation assessment. Now a further concern has emerged about whether their voices are being included in community representation.

The dumbing down of Hepatitis B is not confined to Government language or IBCA policy. It can also appear in the wider choices made about whose experiences are placed at the centre of public campaigns, meetings and delegations.

Inclusion is not a criticism of those already inside

Asking why Hepatitis B was apparently excluded is not an attack on the people who wrote the letters, the charities supporting them or any other infection group.

Representation is not a limited resource. Including Hepatitis B does not weaken the voices of people living with Hepatitis C or HIV. It strengthens the collective case by showing the full reach of the scandal.

A movement asking institutions to listen must be willing to examine who it listens to itself.

Questions that deserve an answer

- Which organisations and community representatives were invited to join the delegation?

- Who decided how those invitations would be allocated?

- Were any Hepatitis B representatives approached?

- If not, why not?

- Will Hepatitis B voices be included when the book is presented or in any meeting that follows?

- How will future initiatives claiming to represent the community ensure that smaller or repeatedly overlooked groups are not excluded?

This should be easy to resolve. Publish the basis on which the delegation was formed, correct any omission and make room for Hepatitis B representation before the book is handed over.

Hepatitis B must not remain the forgotten infection of the infected blood scandal.

Who decides which voices are allowed through the door—and why are some still being left behind?

Sources and editorial note The Hepatitis C Trust: Infected blood victims’ groups ask Andy Burnham MP to finish the fight for justice World Health Organization: Hepatitis B fact sheet The statement about exclusion is attributed to a community member and has not yet been independently verified. The organisers are invited to respond or provide clarification for publication.