Where do the parties stand on Rare Diseases Funding

Where do the parties stand on Rare Diseases Funding leading up to Election 2017?

For the last several months the NZPN Board has been working SO HARD lobbying MPs and candidates contesting the upcoming NZ General Election.

We asked each and every person these 3 questions:
1. If elected in this upcoming General Election, will you support Pompe Disease patients by pressing for PHARMAC to fund the treatment?
2. Will you apply your voice and vote in Parliament to ensure sufficient funds are available for PHARMAC to approve the funding of Myozyme?
3. Do you think, in a first world country like New Zealand, medicines for fatal diseases should be withheld from sufferers?

These are the stances of each party that replied:

Labour Party - David Clark, Labour's policy of establishing a rare diseases fund would include Pompe disease. We acknowledge that the Pharmac model does not provide for those with rare diseases. This fund would have consumer representatives on the committee so the need for medications to treat Pompe disease would be clearly outlined. And I would be very keen to advocate on your behalf if I were elected to represent you. Please feel free to get in touch again if you would like further clarification.

NZ First - We have committed to two things, we understand the system is not working and hence we have called for a review of Pharmac’s funding policy. Secondly, I quote from Ria Bonds (Health spokespersons NZF) “New Zealand First will set up a separate pharmaceutical fund for sufferers of rare diseases to be administered separate to PHARMAC.” That was yesterday in an interview with nzdoctor.co.nz – I see you have been quoted there recently too. Keep up the good work.

As the last answer, we need both a review of Pharmac funding policy and a separate fund for such diseases.

No, definitely not - medicines should not be withheld for fatal diseases.

National Party - Jonathon Coleman, Dear Ms Lock
On behalf of Hon Dr Jonathan Coleman, Minister of Health, thank you for your email of 6 August 2017 with a letter from the New Zealand Pompe Network.
The Minister has noted your comments and advises that there is no further update on this matter since his last correspondence of 30 May 2017.
Thank you for writing.

TOP - Because of cost I can understand why Pharmac is hesitate in funding this treatment.

The Opportunities Party Healthcare policy is yet to be released however our world class health system faces many challenges going forward and our priority is to focus on prevention and to get the most out of our health spending. Therefore in principle we support the Pharmac model. In view of this response and to answer your question I would like to advocate for your Pompe Disease patients in any way we can however we will not be interfering with the current Pharmac model and decision making processes.

Regarding your question on ensuring sufficient funds are available for Pharmac to approve funding this is a challenging question as there is only finite funding available with increasing demand for funding. Mental health, teen suicide, elective surgeries and chronic illness management all require additional funding with DHB’s resources already stretched and in deficit.
TOP would like to apply the Pharmac funding model to other areas of health spending as an independent funder with a strong mandate to invest in cost effectiveness to provide the best possible public health care to the most people possible. We believe that if our approach was implemented we would see more money going into funding cost effective drugs over time, but mental health and primary care are likely to be the first cab off the rank for extra funding.

To answer your third question personally this is the most difficult to answer from a health professionals point of view and again I empathise with your position we would love to be able to fund all essential treatments required for all New Zealanders. This is why the Opportunities Party is focused on addressing our inequality and poverty through changing NZ Super and introducing a UBI to invest in struggling families, reforming asset tax to change how tax is collected and improving productivity in our economy with the view of increasing our standard of living. This will eventually allow us to invest more in improving our publicly funded health care system.

Greens - We have deep concern for any patient who can’t access treatment. However, our preferred solution isn’t for politicians to decide on individual medicines. The Pharmac system isn’t perfect but it buys the most drugs at the best price to provide for the largest number of New Zealanders; it is reasonably free of political interference, and it needs to stay that way.

We do support a separate fund for people with rare disorders, to be allocated according to need (rather than Pharmac's current criteria). This fund should make use of Pharmac's negotiating and purchasing leverage but decisions should be made independently.
Overall funding for pharmaceutical access is inadequate to meet the cost of new medicines with potential benefits. National have a history of doing just enough without solving the bigger problem. This includes the latest injection of money in Budget 2017. We would fund the pharmaceutical budget at a higher level to help clear the backlog of recommended medicines.

The Green Party supports, and will protect, the independence of Pharmac to ensure that it can prioritise the public benefit. We will ensure cost/benefit analyses take into account the full economic cost of ill health, such as unemployment and inability to do unpaid work, when assessing the costs and benefits of a drug and investigate issues around the patenting of medications including the length of patents and the effect this has on the availability of these medicines to New Zealanders.

We do not support political interference in Pharmac decision-making, but do believe that DHBs need sufficiently good quality information about the health gain from both pharmaceutical and non-pharmaceutical interventions to be able to allocate an appropriate amount into Pharmac's budget for community pharmaceuticals.

For more information on Pompe disease, please visit: http://nzpompe.network

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