Denise Ernst had ulcerative colitis and was treated with a drug that has just become available on the PBS. Photo: Jamila Toderas
Thousands of sufferers with a type of chronic and incurable inflammatory bowel disease could soon have affordable access a life-altering treatment that previously cost up to $20,000 a year.
Infliximab has been made available on the Pharmaceutical Benefits Scheme and can be used to treat people with moderate to severe ulcerative colitis, including children aged six to 17.
Professor Paul Pavli, a gastroenterologist at Canberra Hospital and ANU medical school, said ulcerative colitis could be a debilitating condition for sufferers.
It is estimated more than 30,000 people in Australia have the disease.
The condition is characterised by chronic inflammation of the lining of the large intestine with symptoms including abdominal pain, frequent bloody stools and high sense of urgency, cramps, weight loss and fatigue.
Professor Pavli said the causes of ulcerative colitis were not known but it was becoming more common.
He said infliximab was a “life-transforming” treatment for people whose condition had not responded to conventional therapy, including other medication, steroids and immuno-suppressive drugs.
“In the past, if the conventional therapies hadn’t worked … then people were looking at removal of the bowel so that would involve either having a bag on the abdomen or a pouch,” he said.
Professor Pavli said the cost of the drug, prior to its PBS-listing on December 1, was between $15,000 and $20,000.
About 80 people in Canberra have been treated with the drug, and of those, about three-quarters were spared having to have their bowel removed, Professor Pavli said,
Denise Ernst, 47, is one such patient who has benefited from the treatment.
The mother of one from Jerrabomberra was diagnosed with ulcerative colitis a year ago.
The self-confessed “gym junkie” said she was incredibly tired and even exercising became an effort, but she initially put her symptoms down to a severe gastro bug.
However after three weeks and losing 10 kilograms, she was hospitalised and she was diagnosed with ulcerative colitis. Her bowel was so inflamed doctors were unable to perform a colonoscopy.
She spent more than a week in hospital and was treated with steroids, and despite an initial improvement in her condition, she “plateaued”.
It was after this that she was able to access infliximab through a program run by Canberra Hospital and was discharged within two days of her first infusion.
She requires the treatment every eight weeks and her doctor believes she may need to be on it for another four years.
A colonoscopy in October revealed Ms Ernst’s intestines had healed and although she has significant scarring, she is now largely free of symptoms.
“Without infliximab, I would have been facing surgery which really scared the crap out of me which is an appropriate way to say it I guess,” she said.
Ms Ernst said the PBS listing of infliximab was simply “awesome” and she hopes it will give other colitis sufferers the same quality of life she now enjoys.