New Zealand Organisation for Rare Disorders - Issue #5 2013

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone,

In this issue:
1 – Opposition political parties promise an orphan drugs access programme for New Zealand.
2 – Professionals and academics provided crucial support for NZORD’s medicine access campaign.
3 – NZORD’s network contributed strongly to consultations and submissions to Pharmac.
4 – A tricky legal issue at the nub of our difficulties with Pharmac.
5 – Family carer payments policy adds insult to injury for families caring for severely disabled adult family members.
6 – Help recruit participants to the State of Caregiving study.
*****************************************************************************************************************************

1 – Opposition political parties promise an orphan drugs access programme for New Zealand.
Rare disease support groups are celebrating a big step towards gaining access to specialised medicines. At our recent workshop on medicine access, we were delighted to hear Labour’s health spokesperson Annette King promise the implementation of an Orphan Drugs Access programme for New Zealand. Important features of this policy include a separate fund, separate management (away from Pharmac) of the fund by a committee in the Ministry of Health, patient representatives on the committee, and implementation of the scheme within 100 days of a change of government.

Support for the policy from Kevin Hague (Green Party) and Barbara Stewart (NZ First Party) adds to the strength of this promise and the high chance it will actually be implemented. A letter from the Maori Party also indicates clear support from a systems change for access to specialised medicines. The indicative budget gives us confidence that currently unmet needs for these drugs can be substantially met under this new policy.

This policy shift is the culmination of over 10 years determined work by NZORD and its network to highlight the failure of Pharmac’s approach and to win political support for a systems change. Of course this promised new policy still needs to be actually implemented but we are delighted with this game-changing policy shift by a wide range of political leaders in New Zealand.

2 – Professionals and academics provided crucial support for NZORD’s medicine access campaign.
For over 10 years we have spoken to anyone who would listen, about access to specialised medicines and the inappropriate and extremely narrow perspective Pharmac showed on these matters. It was apparent that Pharmac’s success in winning good prices on medicines for the bulk of the population was blinding many who should have been interested, to the serious deficiencies in Pharmac’s approach to specialised medicines and those in exceptional circumstances. The introduction of the Medicines strategy and subsequent reviews of medicine policy, actually resulted in Pharmac deliberately tightening and restricting access to specialised medicines, contrary to what the reviews intended.

A decade of frustration may now be close to an end as we have been supported by human rights lawyers, public policy practitioners, moral philosophers, health professionals, litigation specialists, and health economists, in challenging the stranglehold Pharmac has had for so long on these debates. This strong alliance of professionals and academics, added to patients’ voices from NZORD’s network, undoubtedly was a big factor in persuading four political parties that a change of system was necessary and inevitable.

3 – NZORD’s network contributed strongly to consultations and submissions to Pharmac.
Throughout June, July and August 2013 there was a real winter of discontent among rare disease support groups in New Zealand, triggered by Pharmac’s consultation on the drug eculizumab and also on their decision criteria. The serious deficiencies seen in Pharmac’s approach led to a strong response from patients and support group leaders. We identified serious errors and misleading information in their eculizumab consultation document, organised many to attend the public consultation meetings they held around the country, and provided information to groups to assist them with their own submissions. Much of this work involved the Access to Medicines Coalition also.

The tremendous enthusiasm with which so many patients, families and support group representatives contributed to this campaign, was very heartening to see. It provided us with many useful insights that contributed to our submissions on these important matters. Read our submission on eculizumab and our submission on pharmac’s decision criteria.

4 – A tricky legal issue at the nub of our difficulties with Pharmac.
NZORD assessed the recent round of consultation on their decision criteria as posing a significant risk that Pharmac would treat all matters raised as discretionary matters, for them to include or exclude into future decision criteria as they saw fit. This risk was heightened by analysis of Pharmac’s past behaviour where it had, over time, reduced and minimised references in its own policy documents to any matters outside the narrow band of factors they prefer to focus on. Our recent submissions highlight their practice of resiling from broader human rights, legislative, and moral considerations.

In response to this risk and with legal advice from a team of experienced Barristers, in early September NZORD provided Pharmac with a letter which spelt out matters that we consider to be mandatory considerations for them right now, as well as when any future changes are made to their decision criteria. Read more about this issue.

5 – Family carer payments policy adds insult to injury for families caring for severely disabled adult family members.
Can anyone believe the government’s family care payments policy, which will mostly pay parents to care for about 1600 seriously or profoundly disabled adult children, will actually make the disabled person the employer of their parent? What planet were they on when they devised this policy? In most situations the disabled person will be substantially reliant on their parent for all their needs, including communications, and management of all their personal, financial and social needs.

The government has arranged this new policy so the disabled son or daughter will be responsible for payment of wages and taxes, health and safety requirements and all other employer responsibilities. Attempts by Carers’ representatives to be involved in the development of the policy for family care payments, were rejected by government. Only some token consultation was provided for once the policy was largely set in stone. Read the media release from the Carers Alliance, and weep.

6 – Help recruit participants to the State of Caregiving study.
You can do something positive to help, by recruiting family carers to complete New Zealand's first in-depth longitudinal study, being developed by Carers New Zealand in partnership with the University of Auckland's Faculty of Medical and Health Sciences. The State of Caregiving Study will explore responses from hundreds of carers across age groups and caring situations (and track their feedback over time) to provide a long-term view about how carers are faring, their physical and mental wellbeing, ability to save for retirement, and more.

The survey takes about 25 minutes to complete and the research findings will be shared with community organisations, government agencies, and via public messaging across society. Currently NZ is very reliant on international caregiving research to inform decision-making for carers in NZ. Can you promote the survey https://www.surveymonkey.com/s/7L3N9Q2 to carers and supporters in your network, and encourage them to take part?

Regards, john

John Forman
Executive Director, NZORD
New Zealand Organisation for Rare Disorders

ENDS

© Scoop Media