BOWEL DISEASE PATIENTS TO MARCH ON PHARMAC AND PARLIAMENT TO PRESENT 30,000+ SIGNATURE PETITION ON 2 DECEMBER

on 1 December

Crohns & Colitis

 

BOWEL DISEASE PATIENTS TO MARCH ON PHARMAC AND PARLIAMENT TO PRESENT 30,000+ SIGNATURE PETITION


On 2 December 2020, Crohn’s and Colitis NZ will lead a march of patients, supporters and medical specialists on Pharmac and Parliament to present a petition pleading for access to ustekinumab, an urgently-needed medication for New Zealanders suffering with severe Crohn’s and Colitis, for whom all other treatments have failed.  The march is the culmination of an intense three-month nationwide campaign to highlight the desperate need for this treatment. 

Pharmac CEO Sarah Fitt and Chair Hon Steve Maharey will address the petitioners outside their headquarters, and join a three-minute silence to mark the lives of those who have suffered needlessly by not having access to medications readily available in other countries. Act Party Leader, David Seymour, who initiated the cross-party calls for a Government review of Pharmac in the lead-up to the election, will receive the petition at Parliament.

Schedule and interview opportunities 

  • 10.45am: Petitioners gather at Civic Square, Wellington for speeches by campaign leaders
  • 11.30am: March leaves Civic Square
  • 11.35am: Stop at Pharmac’s headquarters at 40 Mercer Street for 3 minute silence and address by Pharmac chiefs
  • 12.15pm: Stop at at the Cenotaph on the corner of Lambton Quay and Bowen St; patients and doctors available for media interviews
  • 1.00pm: Petition presented at Parliament

Speakers & potential interviewees 

  • Richard Stein, MD, FRACP, FACG, AGAF, Chair, Crohn’s & Colitis NZ
  • Professor Richard Gearry MB ChB, PhD, FRACP, Professor of Medicine, University of Otago
  • Belinda Brown, patient & Operations Manager, Crohn’s & Colitis NZ  
  • Marian O’Connor RGN, MSc, Co-Chair NZ Inflammatory Bowel Disease Nurses Group
  • Hon Steve Maharey & Sarah Fitt (Pharmac CEO & Chair) at Pharmac’s headquarters on Mercer Street
  • David Seymour, Act Leader – outside Parliament
  • Brooke Van Velden, Act Deputy Leader and Health Spokesperson 
  • Patients and their supporters

 

FOR MORE INFORMATION, CONTACT: 

Richard Stein MD, FRACP, FACG, AGAF

Chair, Crohn’s & Colitis NZ
chair@crohnsandcolitis.org.nz
027 545 4539

 

FOR INFORMATION AND CONTACT DETAILS FOR PATIENTS WITH CROHN’S OR ULCERATIVE COLITIS, CONTACT:

Belinda Brown
Operations Manager, CCNZ
b.brown@crohnsandcolitis.org.nz
021 624 583

 

Visit the petition site at www.wecantwait.nz

 

About Crohn’s disease and ulcerative colitis[1]:

  • Crohn’s and ulcerative colitis are chronic, incurable, inflammatory diseases collectively known as Inflammatory Bowel Disease (IBD).
  • Over 20,000 New Zealanders have
  • New Zealand has the third highest IBD rate in the
  • Most people are diagnosed in childhood, their teens or early adulthood, and suffer with these illnesses their entire lives. Children in particular are impacted in their most formative
  • Symptoms are severe, urgent, bloody diarrhoea, bowel blockages, abdominal pain, perforated intestines, and abscesses and inflammation in the anal area.
  • ‘Flares’ of the disease are common and frequently involve emergency hospitalisation, and repeated irreversible surgeries to remove sections of the
  • Many patients are forced to live with a permanent ostomy (bag).
  • IBD has an array of other symptoms including arthritis, diseases of the spine, the liver, diseases of the eyes, skin lesions, and an increased risk of bowel
  • NZ has one of the highest per capita rates of IBD in the world, and it is growing at over 5% per
  • IBD has profound physical, social and psychological impacts on those living with it, affecting their education, social relationships, work lives, and their ability to have a family.
  • IBD costs NZ an estimated $245 million in healthcare costs and lost
  • There are two effective, but currently unfunded treatments for people with severe Crohn’s and Colitis who have failed to respond to medications currently available in NZ :
    • ustekinumab, which was approved by Medsafe in early 2018, has been given high priority by Pharmac’s gastroenterology sub committee, but has not been funded by Pharmac; and
    • vedolizumab, which is currently awaiting Medsafe registration.

 

[1] Snively, S (2017) Reducing the Growing Burden of Inflammatory Bowel Disease in New Zealand. https://www.burdenofibd.org.nz/research

 

Back to blog entries

Areas of Interest