Hepatitis C condition still stigmatising, says support group
People imagine that if you are a man ‘you got it from other sources’
“We have a member who travels 57 miles to get his prescription because he doesn’t want the local chemist to know he is infected.” Photograph: Getty Images
Many people who contracted hepatitis C through contaminated blood still feel stigmatised by the condition, support organisation Transfusion Positive has said.
Maura Long, chairwoman of the organisation, said the public often does not understand the condition.
“People imagine that if you are a man you got it from many other sources; they just don’t think of a blood transfusion. Unless it comes to your door you don’t educate yourself on everything.”
She said some people with the condition were reluctant to meet the organisation publicly. “If we are having a Transfusion Positive meeting and it is in a local area, they might decide to travel 50 miles to a different meeting so they will be outside their own area so nobody will know,” Ms Long said.
“We have a member who travels 57 miles to get his prescription because he doesn’t want the local chemist to know he is infected.”
The organisation was set up in 1995 in the wake of the Anti-D scandal when it became clear a large number of people were infected with hepatitis C through blood transfusions.
So far approximately 1,600 people who received contaminated blood or blood product have contracted the disease.
Ms Long said because the condition affects the liver the main symptom is chronic tiredness. “You could wake up after 14 hours’ sleep and be equally tired; other days you might be fine.”
Pains and aches in joints, also fibromyalgia, pains and aches all over the body, and skin condition lichens planus may be experienced. A liver transplant may be needed. Related illnesses include diabetes and depression.
People who contracted the condition through contaminated product are entitled to a Health Amendment Act card, similar to a medical card but with additional services on more flexible terms.
However, Ms Long said some times there were challenges around communicating those entitlements. HSE, hospital, pharmacy and other staff may be new or not properly trained, and may not understand the entitlements. “You are constantly battling to educate them.”
The recession also impacted on the services the organisation can provide, which is run by volunteers.
Ms Long said the system to calculate compensation, paid out through the hepatitis C and HIV compensation tribunal, was “very fair”. People were compensated “like for like”, and “no one gets a penny more than anyone else in real terms”.