Petitions Presented: A United Stand for Medicines
25th November 2019
A UNITED STAND FOR MEDICINES
Today at Parliament at 12.30 pm, eight petitions are being presented for medicines to be funded for a number of diseases to Members of Parliament from ACT, National, Labour and NZ First. Representatives of the political parties will speak, as well as the petitioners. The petitions being presented are as follows:
1. Petition of Edward Porter on behalf of Kalydeco for Kiwis to fund Kalydeco for Cystic Fibrosis patients. 10,895 signatures.
2. Petition of Stephen Wilson on behalf of Lynch Syndrome NZ to fund Keytruda for Lynch Syndrome patients. 1820 signatures.
3. Petition of Marsha Mackie on behalf of Diabetes NZ to fund Continuous Glucose Monitors, GLP1 agonists including Bydureon, Byetta, Lyxumia, and Victoza, SGLT2 inhibitors including Forxiga and Jardiance, and DPP-4 inhibitors including Januvia, Onglyza, and Trajenta. 27, 958 signatures.
4. Petition of Malany Turner on behalf of PKU NZ to fund Kuvan and Palynziq for Phenylketonuria patients. 1896 signatures.
5. Petition of Elizabeth Hunt on behalf of Lysosomal Diseases NZ to fund Fabrazyme, Replagal, and Galafold for Fabry Disease patients. 201 signatures.
6. Petition of Diana Ayling on behalf of Head and Neck Cancer NZ to fund Keytruda for Head and Neck Cancer patients. 641 signatures.
7. Petition of Selina Leigh on behalf of Tahu Foundation and Brain Tumour Support NZ to fund Avastin for Glioma patients. 3368 signatures.
8. Petition of Kristin Dunne to fund Erbitux for Bowel Cancer patients. 1165 signatures.
Since October last year, twenty-two petitions (including the eight listed above) have been presented to Parliament for the funding of fifty-one medicines and medical devices across seventeen diseases and conditions (including nine cancers and five rare disorders). The total number of people who have signed the petitions is over 155,000.
States Chair of Patient Voice Aotearoa Malcolm Mulholland “In the space of just over one year, over 150,000 signatures have been collected for over twenty petitions that cover a range of diseases and conditions, asking that over fifty medicines or medical devices be funded. If that doesn’t indicate that New Zealand has a medicine funding crisis, then I don’t know what does. The blunt reality of this crisis is that thousands of New Zealanders are either dying unnecessarily, dying prematurely, or living with a low quality of life.”
“There is one reason why thousands of New Zealanders are going without the medicines they need and it is because Pharmac is not funded to the level it needs to be. This is why there are over one hundred medicines on the Pharmac waiting list, why Pharmac will challenge the efficacy of drugs that are funded in numerous other countries, and why it takes on average four years to fund one treatment. Pharmac is in crisis as evidenced by the record number of petitions being lodged to Parliament. The only way this can be achieved is by doubling the Pharmac budget.”
Ruby McGill has Type I Diabetes and requires Continuous Glucose Meters (GCM’s) to be funded. The Diabetes NZ petition asks that CGM’s be funded as well as nine drugs for Type II Diabetes. Comments Ruby “I’ve been fortunate to have an uncle fund a CGM for one year at a cost of $5000. It allowed me to live a full life as a mum, partner, sister, friend and business owner. In twenty years of living with the disease, I was in control of my diabetes and enjoyed better physical and mental health. By not funding CGM’s and the drugs, 260,000 New Zealand diabetic patients will continue to suffer from comas, seizures, blindness, kidney failure, amputations, heart disease and death. It is beyond belief that our Government allows so many people to suffer.”
Edward Porter’s son Otis has Cystic Fibrosis. Currently, Otis has a life expectancy of 37 years and maintaining a quality of life is a constant battle. If Otis could access the drug Kalydeco, he would live a relatively normal and lengthy life. “My heart breaks when I know that there is a drug that is funded in other countries that will give my son a normal life. If we stay in New Zealand, Otis’ condition will deteriorate to the point where he will die young. As the drug is funded in Australia, we face the very real prospect of becoming medical refugees, a decision that many New Zealanders we know have made in order to give their children the best shot at life. Why won’t our Government do something to help our son?”
Patient Voice Aotearoa continues to receive requests of support from patients and organisations wanting to lodge petitions for the funding of different medicines. Remarks Malcolm Mulholland “While we encourage patients and organisations to continue to lodge petitions with Parliament for certain drugs and medical devices to be funded, as Patient Voice Aotearoa, we have started our own petition that we believe will solve the medicine crisis that confronts New Zealand. We encourage all New Zealanders to take thirty seconds of their day and sign a petition that calls upon the Government to double the Pharmac budget immediately, with a view to triple the Pharmac budget over two years, and to conduct an external reform of the agency whereby international funding guidelines are followed, clear timeframes are set by which medicines will be deemed to be efficacious and when a drug or medical device will be funded, and for a rapid access scheme to be established.”
Mulholland’s final plea is to the Government, the Minister of Health, and the Prime Minister. “Stop muddying the waters by saying that Pharmac is independent of Government. We agree that politicians should not be second guessing clinical decisions about what drugs to fund or not but that is not what this debate is about. This is about the Minister taking responsibility of an agency that falls within his portfolio and equipping it with the resources it needs to do its job properly. If we fund Pharmac properly by aligning the level of funding of Pharmac with the OECD average, then the agency would clear the current backlog and fund the over one hundred medicines on its waiting list, it would be able to fund medicines much quicker, it would follow international guidelines and not swap psychotropic drugs that have potentially claimed the lives of four New Zealanders, it could develop an equitable process for the funding of drugs that treat rare disorders, and it could provide quick and easy access to drugs that are promising but require more clinical data.”
“Failure to act now and not addressing the medicine funding crisis will result in more unnecessary deaths, in people not living as long as they should, and in people having a poorer quality of life. This Government was elected to power on the promise of caring for the people, of prioritising wellbeing and being transformational in the lives of New Zealanders. It they do not act now and with urgency, then this Government will be remembered for not valuing life itself.”