Pharmac protest: Drug funded overseas, but not here
It is too late for Hayley Greer.
The 24-year-old from Lower Hutt had surgery to remove her colon in January, aftermedicine for her inflammatory bowel disease stopped working. She will live with an ostomy bag for the rest of her life.
She joined dozens of protesters on a march through Wellington’s streets yesterday afternoon to present a 30,000 signature petition to Parliament calling on Pharmac to fund ustekinumab, a medicine used to treat bowel disease.
More than 20,000 New Zealanders live with diseases such as Crohn’s or colitis but if the funded drugs don’t work, or for only a limited time, there are no other options but surgery.
‘‘If it was funded it could’ve prevented me having to have my colon out. It could’ve prevented my whole surgery,’’ Greer said.
‘‘That is really hard to process.’’
Ustekinumab is funded in more than 35 countries. Without the expensive treatment, patients are condemned to a life of unnecessary pain, Crohn’s and Colitis NZ chair Richard Stein said.
‘‘When people don’t respond to medication we have nothing left except surgery. The disease also comes back,’’ he said.
Marian O’Connor, co-chair of the Inflammatory Bowel Disease nurses group, said nurses found it ‘‘frustrating, heartbreaking and soul-destroying’’ to tell young patients they needed to have major surgery.
People are most commonly diagnosed with Crohn’s or colitis as teens or young adults.
‘‘Sitting with a 17-year-old girl explaining that her bowel is going to be removed and that she will have to live the rest of her life with a stoma bag is heartbreaking,’’ she said.
Pharmac’s own committee advised that it fund ustekinumab in May. Its chief executive, Sarah Fitt, told protesters she had regular discussions with suppliers and hoped the medicine would be funded soon. The drugs were on a waiting list.
Chair Steve Maharey said they would ‘‘do their best’’ to get the medicine funded.
‘‘I want to reassure you these issues are in the top of our mind. We would like to solve them and will do our best to solve them,’’ he said.
‘‘I know these are difficult moments. We would love to give you [a resolution]. We are going to try our best.’’