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New Zealand Pompe Network

New Zealand Pompe Network

Rare disease crusader, Allyson Lock, received the Member of the New Zealand Order of Merit for services to people with rare disorders at Government House, Wellington on Thursday 19th September, the day after her 55th birthday.

Allyson Lock was diagnosed with the fatal neuromuscular Pompe disease in 2010. Although the diagnosis was shocking, she was more upset to find out that the treatment she needed was not funded in New Zealand, but was funded in 75 other countries. This is something that Allyson has been working on changing ever since.

Allyson is the President of the New Zealand Pompe Network, a registered charity that supports Pompe patients and their families. As President she has tirelessly advocated for access to enzyme replacement therapy in New Zealand. She has represented New Zealand rare disease patients on the global scale, facilitated efforts in engagement with government agencies and coordinated an awareness campaign during the 2017 general election.

In February 2019, Allyson also received the Patient Advocacy and Support Award from the New Zealand Organisation for Rare Disorders to recognise her ongoing commitment to supporting the rare disorder community.

“While I am extremely humbled and proud to become a Member of the New Zealand Order of Merit, I do feel it is very ironic that I am being recognised in part for my battle against the New Zealand government, and Pharmac. To receive such an honour, but not the medicine I need to survive, is a real juxtaposition. I hope someday soon our government will consider that people with rare diseases are worthy of treatment” says Allyson.

Allyson hopes that the government might finally be listening. There has been an outpouring of petitions, (including Allyson’s, asking for funding for Myozyme to treat Pompe disease), letters, meetings and social media posts to the Health Select Committee and the New Zealand government over the last several months, all asking for funding for rare diseases, cancer and other disorders.

Following these petitions the government recently announced they would establish a cancer control agency and invest $60 million into Pharmac. “While this is a great first step, this only tackles cancer, and barely”, says Allyson. “The funding of rare disease treatments are still being denied. The government needs to address the deficit in the medicines budget. New Zealand is now ranked lowest in the OECD for medicines expenditure. We ask the Prime Minister to fulfil her election promise of 2017 and deliver better outcomes for New Zealanders living with rare diseases, including Pompe disease.”

For more information on Pompe please refer to The New Zealand Pompe Network.

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