Dear Prime Minister Ardern

14 May 2018

NZORD is the only national organisation that supports and advocates for the more than 377,000 underserved people with rare disorders in New Zealand.

We have been working fruitlessly to renegotiate our next contract since January 2018. Disappointingly, we have also been unable to secure a meeting with the Minister of Health, even though he stated in our joint Radio New Zealand interview in February that “meeting with NZORD was a priority”.

There are just six weeks left of our current MOH contract which expires on 30 June 2018. Following intervention by the NZ Herald, we have only just received a letter proposing to cut our funding over three years to the equivalent of 15 cents per patient we serve.

Does your new government have a coordinated plan to eliminate NZORD’s support for rare disease sufferers? If not, I am asking you to urgently intervene to get a sustainable funding contract in place for NZORD that recognises our unique value and the needs of our patients.

The proposed funding cut is significant for our organisation and the patients we represent. If it goes ahead, NZORD will be unable to continue to provide support to patients and the wider community at the current level. 

NZORD offers a patient-centric service that incorporates a wide breath of rare disorder knowledge with in-depth NGO and health system navigation tools as well as research and clinician support. No other organisation does what we do for Kiwis with rare disease in need. Such people often express severe mental distress related to feeling unseen, disregarded and isolated, and the services NZORD offers is of immeasurable value to them.

NZORD has been funded by the Ministry of Health for 15 years at a rate of $120,000 a year. This equates to 30 cents a year per New Zealander with a rare disorder. Slashing our funding in half by 2020 would mean an allocation of just 15 cents per person. It is insulting to patients for Ministry staff to suggest in recent communications that NZORD is overfunded for the work we do to support this unseen community.  

Last Friday I was interviewed, along with one of the families we support, on TVNZ 1 News: Organisation supporting New Zealanders with rare diseases faces major funding cut (https://www.tvnz.co.nz/one-news/new-zealand/organisation-supporting-new-zealanders-rare-diseases-faces-major-funding-cut)

NZ Herald article featuring Anna and her son Heath who has spinal muscular atrophy:
New Zealand Organisation for Rare Diseases facing closure with not enough funding https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12048799

Newstalk ZB interview with Anna:
Rare disease mum: why is the only group that helps us being demolished? http://www.newstalkzb.co.nz/on-air/early-edition/audio/anna-sutherland-why-is-the-only-group-that-helps-us-being-demolished/

In February I was interviewed on Radio New Zealand alongside Minister Clark who stated that equity for people with rare diseases was a priority for him https://www.radionz.co.nz/national/programmes/ninetonoon/audio/2018633019/double-blow-for-sufferers-of-rare-diseases

Internationally, New Zealand lags far behind countries like Bulgaria and Columbia for the medicines funded and support given to rare disease patients and their families.

I am asking you to intervene to get an urgent and sustainable funding contract in place for NZORD that recognises our unique value. We seek a return to three yearly $120,000 per annum contracts under the DIAS model and would like to meet with you, in person, to discuss this request.

Nāku iti noa, nā

 

 

Dr Collette Bromhead

Chief Executive

NZ Organisation for Rare Disorders