A summary of recent developments

3 August 2018

After a lot of activity on this issue over the past 6 months, a phone conference was held with a number of other support groups that are interested in these difficulties with medicine access, to brief them on the work done. This resulted in support for the approach taken and thanks to LDNZ for the leadership taken on the issue. The groups involved endorsed a joint approach from LDNZ and NZORD to pursue these issues on behalf of the groups interested.

Here is:

Meeting the Minister of Health Today

3 April 2018

For the first time in many years, we got to speak directly to the Health Minister. LDNZ chair John Forman was pleased to meet with Dr David Clark after years of being blocked out by Health ministers in the previous government. The discussion centred on exactly where things are going with policy regarding funding for medicines for rare diseases. It was pleasing to hear the Minister commit to making progress in getting equity into the decision process. He clearly understood the disadvantage our diseases face and he is asking Pharmac for more information about how they will include equity in their next $5 million funding round.

John had the opportunity at this meeting to put a proposal to the minister on how a fairer system could be developed for funding of orphan drugs, and has subsequently had discussions with Ministry of Health officials about the practicalities of how such a system could work. We hold some optimism that there are “live” possibilities for us, and that all is not lost.

The Health minister to the rescue?

21 February 2018

In a radio interview on Nine to Noon, NZORD Chief Executive Collette Bromhead and Health Minister David Clark discussed the policy shifts regarding funding of treatments for rare diseases. Despite the lack of policy in the coalition agreement, the Health Minister confirmed that he is committed to progress in funding treatments for rare diseases and is seeking advice on how this can be achieved within existing structures. Specifically the Minister emphasised he is wanting to see equity at the core of decisions for this group as a new round of funding of $5 million per year for 4 years, kicks off this year. A glimmer of hope remains.

Read the interview here. Listen to the interview here.

November 2017 to February 2018 – Two steps forward and three back?

18 February 2018

We held great optimism for progress on funding of medicines for rare disorders, given the formation of a new government with the three parties (Labour, NZ First and Greens) who each made specific promises in line with our policy, of a separate fund, managed away from Pharmac, and with patient representation in the decision process. But slowly the wheels seem to fall off. The coalition and confidence and supply agreements did not mention this topic. The select committee’s December report on Samantha’s petition failed to nail the key issues and “kicked for touch” while waiting for Pharmac to review its first $5 million pilot fund for rare diseases. A meeting early in February 2018 with three Labour members of the Health select committee confirmed that the plan was shelved in the coalition negotiations to form the new government. We have sought an urgent meeting with the Minister of Health about this.

Pompe patients feature on Seven Sharp

19 September 2017

Samantha Lenik and Freda Evans featured on TV current affairs clip about funding of treatments for rare diseases, and in the process doing a wonderful job of showing the human side of this issue, plus some heartwarming responses from members of the public to their plight. Watch the programme at here.

Political party election promises on medicine funding

4 September 2017

A special edition of the Medicines New Zealand newsletter published details of responses form political parties about the medicine funding policies for the upcoming general election. Very pleasing to note that a combination of statements from Labour, NZ First and the Greens all confirm a new direction for funding of orphan drugs for rare diseases, with a separate fund managed away from Pharmac, and with patient involvement in the decision process.Similar promises are contained in messages sent to the NZ Pompe Network and published on their website. http://nzpompe.network Many years of hard work are starting to show positive results. The commitments we won from these parties in 2014 remain solid as we enter the general election period.

Labour politician confirms plans for orphan drugs fund

19 August 2017

Labour politician confirms plans for orphan drugs fund for NZ At a campaign meeting in the Hutt Valley, Labour politician and former health minister, Annette King, confirmed Labour’s policy of a separate fund for rare diseases, managed away from Pharmac, and with consumer involvement in the decision-making process.

Writing again to the Select Committee

19 July 2017

Writing again to the select committee in response to Pharmac’s submission Following the invitation from the select committee chair, we submitted further information in rebuttal of Pharmac’s statements to the committee earlier in the month, and gave some more information about the weaknesses in their approach to funding medicines for rare diseases. Read our submission here.

Listening to Pharmac’s response to Samantha’s petition

5 July 2017

A very interesting experience as Pharmac’s chief executive appeared before the select committee to give their response to Samantha’s petition. Labour’s Health spokesperson David Clark grilled him on their approach to equity and it was informative to see the CEO twist the discussion to equality. This is the nub of the issue, as treating rare disease equally will most often see them disadvantaged, while an equity approach is needed to balance the inherent disadvantages of rarity and give them a fair go in the system.

The discussion confirmed that David Clark really “got it” while Pharmac either doesn’t understand the distinction, or deliberately blurs it to retain its narrow interpretation of its mission. LDNZ Chair, John Forman, asked the committee if he could have a right of reply to comments made by Pharmac’s CEO, and was invited to put additional comments in writing to the committee.

Interestingly, on leaving the committee room, John was confronted by Stefan Crausaz who expressed his “shock” the we’d be so bold as to ask for a chance to rebut their statements. In a rather tense discussion in the corridor, Stefan made it abundantly clear they were sticking to their narrow approach and not persuaded to give consideration to equity for rare disease patients. He and Pharmac clearly understand the difference between equity and equality, but choose to insist on the equality approach and remain out of step with our entire health system, and all of the guidance in our health legislation and health strategies. It is distressing to see them act so arrogantly and single-mindedly, while also spending so much time with clever PR and spin, to disguise what they are actually doing.

Attending the Health Select Committee

28 June 2017

Samantha fronted up to the committee to speak to her petition and her written submission, and was supported by John Forman, Chair of LDNZ. Samantha’s powerful but dignified presentation was an inspiration to see. We hope the messages will be taken on board and a report produced that deals with the great disadvantage faced by rare disease patients.