From the Chair - Chairman's report.
The announcement by Minister of Health Andrew Little on 22nd April promises major changes over the next few years.
With the disestablishment of the 20 DHB's and the creation of a new, national health service, HealthNZ, there is a real opportunity for substantive change. But only if the transition is done with foresight and care. The health system in its current state is not working. We have several DHB’s with no gastroenterologists, we still have no paediatric IBD nurse at the two major centres that treat our children with IBD, and entirely inadequate funding by Pharmac of pharmaceuticals that have the potential to change lives.
As a community we cannot sit back idly and expect significant change to happen by itself. We need to continue to pressure our MPs to increase Pharmac’s funding, the Ministry of Health to place a priority on the treatment and quality of lives of people with disabilities and chronic illnesses, and we need to continue to effectively push Pharmac to fund medications that our community so desperately needs.
On May 12, another important petition will be presented to Parliament by Malcolm Mulholland of Patient Voice Aotearoa. It calls for doubling Pharmac’s budget. In Malcolm’s words, “Pharmac does not adopt international guidelines; it does not set a timeframe by which it will be decided if a medicine is efficacious; it needs to establish a rapid access scheme.” New Zealand spends a third of what the average OECD country spends on medications for its citizens.
When our community marched through downtown Wellington last December to present our petition to fund ustekinumab, Malcolm Mulholland marched by our side. He also spoke on our behalf that day on the steps of Parliament. He now needs support for his petition:
On the day, his petition is presented, there will be “Lie Down for Life” demonstrations in major cities throughout New Zealand. What is “Lie Down for Life”? It is a symbolic representation of the people who are suffering and dying as a result of not having access to life-saving medications. People are being asked to lie down for five minutes in designated areas. There will be extensive media coverage.
The demonstration and petition presentation in Wellington will be in front of Parliament. I and my family will be there. I encourage everyone to get involved, either by signing the petition or participating in a “Lie down” in your area. This is not just in support of Patient Voice Aotearoa’s petition. It is for everyone with IBD, our children, and our loved ones.
https://weareworthit.nz/locations.html
Wishing everyone a happy and healthy 2021.