20 January 2023: Closing Statements, Roanna Maharaj (Thalassaemia Society)

Roanna Maharaj is the Vice-chair of the UK Thalassaemia Society. She began her closing statement by describing the illness as a rare disorder of the blood. It requires a high level of engagement with health professionals and treatment with blood products. A major fatal risk is iron overload. The description shifted to an account of the impacts of living with the condition, beyond anything to do with contaminated blood. There is stigma, a need for secrecy, reliance on the healthcare system, extended periods of illness, and even the consideration by others that you are “not good marriage material”.

 

Specific to the infection of people with viruses through their treatment, a major issue was the sense of betraying the clinicians they have come to know well. Indeed, the issues were very similar to those of the haemophilia community. People were not told of risks in treatments. There was difficulty in obtaining records or information. More specifically, there was restricted access to treatments and the support of allied healthcare providers.

 

In terms of desired outcomes from the Inquiry, training of healthcare staff was seen as very important, not least because what happened is generally misunderstood, and the original condition of Thalassaemia is so unknown. Financial support is needed and it should be easy to access. People need security and the ability to live without worrying about being able to afford the basics to meet their needs as well as having a degree of quality of life.

 

Ms Maharaj thanked the Inquiry for the way it has operated, allowing people to feel comfortable in engaging with its work. She also recognised the bravery of those who put themselves forward to speak publicly about the condition and the impacts of viral infection.

 

The Chair thanked Ms Maharaj for giving her statement so articulately since the Thalassaemia community is a very underrepresented and unheard group.

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