Campaign for better treatments for IBD Patients

By Dr Richard Stein | Posted: Wednesday October 14, 2020

Richard Stein, Chair, Crohn's Colitis NZ has provided an update on the campaign for better treatment options for patients

It should come as no surprise to this newsletter’s readership that Crohn’s and Colitis New Zealand Charitable Trust, in partnership with the NZSG, and the IBD Nurses Group of the NZNA, has launched a petition and aggressive media campaign to obtain funding for ustekinumab. A similar campaign will be forthcoming for vedolizumab which is currently undergoing review for registration by Medsafe. Ustekinumab, funded in Australia since 2015 and in 37 other countries around the world, is still not available to our patients. No new medications have been funded for Crohn’s disease and ulcerative colitis since 2009 when we had a similar delay in accessing the anti-TNFs.

The petition has already garnered 30,000 signatures and will be presented to Parliament after the upcoming election. It has been featured on national news three times, on Radio NZ, and in several news publications. As a direct result of the campaign, the issue of having an independent review of Pharmac’s processes in approving medications has been raised by three major political parties. The campaign’s steering committee members are Malcolm Arnold, Richard Gearry, Richard Stein, James Fulforth, Marian O’Connor and Jacqui Stone.

Funding ustekinumab will actually save money when compared to keeping those patients with a sub-optimal response to anti-TNFs on high doses, especially when factoring in the cost of ED visits, surgery, and lengthy hospitalisations. The quality of the life issues of our patients need no explanation.

Please consider signing our petition and lending your name to the list of specialists who are publicly supporting this campaign. The website is www.wecantwait.nz. Please also consider becoming a professional member of Crohn’s and Colitis NZ Charitable Trust which is underwriting the costs of this campaign. For more information, you can contact b.brown@crohnsandcolitis.org.nz.