BCAC and Lung Foundation NZ media release, 30 April 2019

Health advocacy groups and individuals will present strongly worded petitions to Parliament on 7 May demanding proper funding of medicines.

In total, eight petitions will be formally presented to MPs, asking that 26 drugs be funded for six diseases. The health groups are Lung Foundation New Zealand, Breast Cancer Aotearoa Coalition, Ovarian Cancer New Zealand, Myeloma New Zealand, Pompe New Zealand and Chronic Lymphocytic Leukaemia Advocates New Zealand.

People supporting the petitions will gather outside Wellington Library at 10.45am then march to PHARMAC at 40 Mercer St for a candle lighting ceremony in commemoration of those who have gone before. The march will then continue along Willis St and Lambton Quay to the steps of Parliament to present the petitions to MPs.

There will be many tens of thousands, if not hundreds of thousands of people throughout New Zealand, providing moral support for the marchers. People will carry photos of their loved ones who have been lost due to their disease, and whose lives would have been improved if medicines were adequately funded.

More than 17,000 people have signed the petitions as of this morning with more time available for people to sign.

The people these petitions represent are all in desperate need of unfunded medicines that would either extend lives or improve quality of life.

“It is great to see so many groups and people joining together to speak up for all the people we represent – who often don’t have a voice,” BCAC Chair Libby Burgess says. “New Zealand is failing to look after our people when they most need help and this is a travesty.  We’re better than that as a country.

“Collectively, we’re giving Parliament, the Government and PHARMAC the strong message that there needs to be significant change – and it must happen now,” Libby says.

“New Zealanders are suffering and dying without vital medicines and the Government can’t continue to ignore this.”

One of the causes taking part in the march to deliver petitions to Parliament is Lung Foundation New Zealand, its CEO Philip Hope says.

“We stand side by side with every one of these patient groups. It is unacceptable that New Zealanders are being denied access to treatments which are the standard of care abroad.

“Sadly, we are witnessing unprecedented suffering and inequity in New Zealand, resulting in premature death for the majority of patients diagnosed with lung cancer and many other cancers.

“PHARMAC, which is an instrument of government, has failed to keep up with modern medicine and this is killing our most vulnerable. We need change now,” Mr Hope says.

Libby says the marchers and their supporters are standing in solidarity to call on the Government to increase the medicines budget to bring NZ in line with comparable countries such as Australia, the UK, Canada and other OECD countries.

  • New Zealand currently spends $199 per person per year on medicines, compared to the 2016 OECD average of $951. New Zealanders deserve better.
  • People are currently having to self-fund medicines if they can afford it (which most can’t). They mortgage the family home, set up Givealittle pages or go overseas to get many of the medicines we are marching for.

“We want to see an independent review of PHARMAC. The model hasn’t changed over 25 years and it needs to be modernised. There is a strong culture of harsh rationing in PHARMAC and no aspiration for improvement. Decision processes are slow, non-transparent and closed to input by those affected and in many cases the clinical experts who understand the value of medicines,” Libby says.

  • There are many benefits of providing the effective, targeted medicines that New Zealanders are missing out on. People stay out of hospital and in the workforce, they contribute to their families and society for longer and are less of a burden to the health system.
  • Meanwhile, more and more people have signed two petitions that were presented to Parliament in October last year calling for funding of two important advanced breast cancer drugs – Ibrance and Kadcyla.
  • The Ibrance petition currently has more than 46,800 signatures, and the Kadcyla petition more than 2880 signatures.

 

The eight new petitions:

Breast cancer: https://www.parliament.nz/en/pb/petitions/document/PET_87731/petition-of-emma-crowley-for-breast-cancer-aotearoa-breast

Chronic lymphocytic leukaemia: https://www.parliament.nz/en/pb/petitions/document/PET_87734/petition-of-neil-graham-for-chronic-lymphocytic-leukaemia

Lung cancer: https://www.parliament.nz/en/pb/petitions/document/PET_86322/petition-of-philip-hope-for-lung-foundation-new-zealand

Lung cancer – non-small-cell lung cancer:  https://www.parliament.nz/en/pb/petitions/document/PET_85074/petition-of-jeffrey-chan-ask-pharmac-to-fund-osimertinib

Myeloma: https://www.parliament.nz/en/pb/petitions/document/PET_87726/petition-of-kenneth-romeril-for-myeloma-new-zealand-fund

Multiple myeloma: https://www.parliament.nz/en/pb/petitions/document/PET_87691/petition-of-dj-whiting-fund-lenalidomide-for-patients

Ovarian cancer: https://www.parliament.nz/en/pb/petitions/document/PET_87690/petition-of-rachel-brown-for-ovarian-cancer-new-zealand

Pompe disease: https://www.parliament.nz/en/pb/petitions/document/PET_87694/petition-of-allyson-lock-for-the-new-zealand-pompe-network

 

 

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