Funding for Crohn’s disease life changing

Crohn's disease: Ann Turnbull, from Grays Point, will start her treatment on Stelara in February. Picture: Chris Lane
Crohn's disease: Ann Turnbull, from Grays Point, will start her treatment on Stelara in February. Picture: Chris Lane

Ann Turnbull has high hopes a drug being subsidised by the Australian government will finally get her Crohn’s disease under control.

Stelara was added to the Pharmaceutical Benefits Scheme (PBS) this month, and will be subsidised around $380 million over the next four years in Australia.

Stelara treatment would normally cost patients over $68,000 per year but will now cost around $230.

The listing will help about 2600 Australians each year who are living with the most severe type of Crohn’s disease, giving them treatment to help them live a normal life.

Mrs Turnbull, from Grays Point, said her specialist was switching her onto the new treatment in February.

“This is a biological drug which I have never tried before,” she said. “But my Crohn’s is out of control and I am looking for the best way to get into remission.”

The mother of two said there was no known cure for Crohn’s and the best result for sufferers was to go into remission – which allowed sufferers to live a more normal life.

Crohn's disease is a type of inflammatory bowel disease (IBD) and includes symptoms like fatigue, abdominal pain, diarrhea, and weight loss.

“It’s not sexy to talk about. And that’s why you can have a mate at work who lives with an inflammatory bowel disease and does not talk about it.”

Australia has one of the highest rates of inflammatory bowel disease in the world with more than 80,000 people living with Crohn’s disease. 

Mrs Turnbull said having Stelara subsidised made it more affordable for her family.

“How can you go without an entire salary because someone needs to get better? It’s unthinkable. We would have gone for it anyway, but I don’t know how we would have done it.”

She said it would hopefully make a big difference to her health.

“I am hoping it will mean the ulcers that are raw and bloody will heal and hopefully I will never have to go on a liquid diet again.”

Mrs Turnbull said living with Crohn’s meant she was often fatigued, and often had to live off a liquid diet for weeks at a time. She said if she did not watch her diet she could end up in hospital with a Crohn’s attack, which was excruciating.

Crohn’s and Colitis Australia board director Gregory Moore said the organisation was rapt to welcome another treatment onto the PBS.

”Ustekinumab (Stelara) is a biologic drug – a targeted monoclonal antibody against two immune signalling chemicals called IL-12 and IL-23,” he said.

“The first dose is given intravenously [through a drip] and then subsequent doses are self-administered with an under the skin injection every eight weeks.”

He said people living with Crohn’s should talk to their gastroenterologist about their treatment options.

Patients will now pay a maximum of $38.80 per script for Stelara (or $6.30 if they are a concessional patient).

Caringbah Discount Drug Store community pharmacist Emily Loa said it was a good result for people suffering from Crohn’s.

“I regularly encounter people with Crohn’s disease who desire a more affordable and effective treatment option for their condition. It has been great to see these patients happy that they can now get a PBS-authorised prescription for Stelara filled at their local pharmacy at a highly subsidised cost.”

  • Mrs Turnbull is also the facilitator of the Sutherland Shire Crohn’s and Colitis Australia support group.
  • The group meet regularly in the shire at Gymea Anglican Church with about 10 to 15 people.
  • For more information about the support group contact Crohn’s and Colitis Australia on 1800 138 029.