No Pharmac help for Crohn’s sufferer

Dunedin Hospital nurse Dana Smith, who suffers from Crohn’s disease, says  if she took a sick day...
Dunedin Hospital nurse Dana Smith, who suffers from Crohn’s disease, says if she took a sick day every time she felt unwell she would never be at work. Photo: Gregor Richardson.
On the outside, Dunedin Hospital nurse Dana Smith (23) looks like a healthy young person, but on the inside she is anything but.

The general surgical ward nurse, originally from  Cromwell, says the pain she suffers as a result of Crohn’s disease is near-debilitating.

"At the moment the bad days outweigh the good days."

Her recent application to Government agency Pharmac for funding for Stelara, an intravenous infusion which could reduce the effects of Crohn’s, was declined.

The rejection for the medicine, which was funded in Australia and cost about $6000 per vial  (six vials were needed for the first treatment and then one eight-weekly after that) was "absolutely devastating".

She  battled the disease through high school and then nursing school, but more than seven major operations, including having most of her colon removed, had not helped her to manage the disease.

Last year, she had an anaphylactic reaction to a treatment drug.

"At this point the plan I think is to either wait for the drug (Stelara) to get funded, or get a permanent stoma, which is obviously not what you want as a 23-year-old female."

Miss Smith  refused to let her battle with the disease cripple her. Rather, she hoped it made her a more compassionate nurse.

"You definitely have a different type of empathy that you can show your patients without telling them you are sick, too."

The ward in which she worked was also the ward where she recovered from several major operations  after being diagnosed when she was 17.

"It is really good to work in a ward where they understand what I’m going through."

Prior to being her boss, her charge nurse had worked as part of her nursing team.‘‘He’s seen parts of me that not many charge nurses have seen,’’ she said, laughing.

Miss Smith  did not have energy to do much other than sleep when not working, but when she did she advocated for the needs of young people  with inflammatory bowel disease (IBD) and Crohn’s disease, ulcerative colitis and indeterminate colitis.

Yesterday was is  World IBD Day, which aims to  raise awareness for diseases  she believed carried a taboo  because they involved the bowel.

In 2016 she travelled to Slovenia for the youth IBD conference, and if her health allowed her she hoped to travel to Paris in July for the same conference.

Regardless of how bad the disease made her feel, she had no plans to stop working.

"I’ve considered doing an office job or something a little bit easier, but I think it would be bad for my mental health.

"This is what I want to do."

margot.taylor@odt.co.nz

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