NZORD Newsletter 2014 #4 - 11 July 2014

Hello everyone,

In this issue:
1 – NZORD’s manifesto for the 2014 General Election – How will the parties respond?
2 – Pharmac consultation on fund for medicines for rare disorders.
3 – Problems with access to Genetic Services and diagnosis.
4 – IHC Survey on education discrimination.
5 – This month’s good news item – the ice water challenge.
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1 – NZORD’s manifesto for the 2014 General Election – How will the parties respond?
NZORD has presented this manifesto to all political parties currently represented in Parliament. It represents the major issues we have been working on in recent years and is supported by the strategic plan adopted by the board of NZORD earlier this year. We plan to publish the responses in early August.

The items on our wish list are folic acid fortification, ensuring timely diagnosis, effective access to services across DHBs, an Orphan Drugs Access Programme, fixing the unfair and unworkable Carer Payments policy, and improving access to respite care. We also seek the development of a government policy and action plan for rare disorders, with these six points as the top priority action items. View the  NZORD manifesto on our website.

2 – Pharmac consultation on fund for medicines for rare disorders.
Pharmac have made good on their promise to issue a consultation document for this special fund and are simultaneously seeking expressions of interest from suppliers. Responses are sought by 25 July.  NZORD has previously expressed concerns about this proposal, particularly the seriously inadequate budget and the likelihood that any agreements are still likely to see many patients remain untreated. We maintain our view that this proposal is not an adequate solution for patients needing orphan drugs, and we continue to advocate for a larger fund managed away from Pharmac as outlined in our election manifesto. However we will work with Pharmac and suppliers to try and influence an outcome that spreads this limited fund as fairly as possible across the various patient groups involved.

3 – Problems with access to Genetic Services and diagnosis.
NZORD is very pleased with improvements made to genetic health services in recent years, but we are concerned to note that District Health Boards are restricting the number of genetic clinics held each year, and also restricting access to some genetic tests for diagnosis of rare disorders. 

Fundamental to effective treatment and care for a rare disease, is getting an accurate diagnosis within a reasonable timeframe. This knowledge can also be an important part of a family’s ability to cope. This issue is included in our election manifesto with a plea for extra resources to clear waiting lists and enable diagnosis of most rare disorders within 12 months of first assessment.

4 – IHC Survey on education discrimination.
IHC have received many complaints about discrimination experienced by disabled children and their families at their local schools. They have filed a complaint with the Human Rights Review Tribunal to get these matters formally addressed. To support their case IHC is seeking recent examples of experiences of discrimination and is seeking family responses via a survey.

IHC have also developed a survey for professionals, Principals, Teachers, Board of Trustees, Teacher aides, Trainee or recently graduated teachers and therapists to complete.  This will give IHC the full picture from both sides and allow them to complete their findings.  You can read more about the IHC surveys and their complaint to the HRRT at this link.

5 – This month’s good news item – the ice water challenge.
The words Ice Water Challenge are on everyone’s lips currently.  This latest craze has taken off on social media and is raising money for charity.  If you are nominated to do the Ice Water Challenge, you are asked to complete the challenge or pay a charity of your choice $100. If you do complete the challenge you are asked to pay only $10.  The challenge dares people to plunge themselves in, or be poured over, with freezing cold water, be filmed doing it, post it to Facebook and then nominate others to follow suit.  NZORD has been lucky enough to have a couple of these brave souls complete the challenge with NZORD receiving the donations. You can donate to NZORD at any time via our Givealittle page.

Edited by Lyndal Bremer and John Forman