"Having some way to record diagnosed cases would give solid data around how many New Zealanders are dealing with this terrible disorder."
Fair for Rare NZ: Chief Executive update
During this time of major upheaval and disruption to our health sector, we need to have clear recognition of people living with rare conditions as a health priority.
Equity means for ALL New Zealanders and must include those with rare disorders, especially given the evidenced barriers and impacts that people face. The opportunities and intentions are available - particularly with Whakamaua, Māori Health Action Plan and Ola Manuia, Pacific Health Action Plan - for an equitable, integrated model which listens to those impacted and learns from them to direct the path forward.
Dishearteningly, with no formal acknowledgment as a collective this is not possible - the reality is there is no mention of people with rare disorders in any substantive policy, other than within PHARMAC’S Statement of Intent in the chair’s foreword:
“As PHARMAC has a fixed budget, we must make consistent, careful and considered funding choices in the interests of all New Zealanders. A recent boost to our funding allows us to make significant investments, including for cancer, rare diseases and diabetes medicines.”
On a more positive note,Prime Minister Jacinda Ardernrecently mentioned rare disorders, in her response to a desperate plea from tangata whenua whānau for access to a life-saving medicine for their son:
“One thing [PHARMAC] doesn’t necessarily or has been seen to necessarily serve, is small groups of the population who have rare disorders or particular health needs so we are undertaking a review of the model to check whether there are things we need to change to best serve those communities.”
We are waiting for a confirmed date for a meeting with the PHARMAC review panel.
One major area of focus is awareness and education for GPs which will be the topic for next week’s quarterly meeting with the Ministry of Health. We also have a meeting with Disability Rights Commissioner Paula Tesoreiro to look at how the disability sector can ensure inclusion of the voice of those with rare disorders when speaking with Government.
We are working on next steps for our Fair for Rare NZ campaign with our Board and will share our action plan soon. Whatever the campaign focus, it will be the strength of our collective, our champions and the small acts made together that determine success. With that in mind I reach out to ask you all on ideas for how we can unify, strengthen and empower the collective of all people impacted by a rare disorder?
We need a voice at the table on decisions that impact our rare disorder collective.
Letter to the NZ Ambassador to the UN
Rare Disorders NZ has written to Craig Hawke, NZ Ambassador to the UN, to request New Zealand adopt the UN resolution on addressing the challenges of people living with a rare disease and their families.
This is aglobal initiativeto ensure the 300 million people living with a rare health condition worldwide are recognised and supported.
Rare Disorders NZ and our rare disorder collective attended the Lie Down for Life at Parliament in May. This event was organised by Patient Voice Aotearoa to call for better access to modern medicines for genetic, undiagnosed and rare disorders.
Protesters lay down by the steps at Parliament for five minutes in the rain to show their determination for better access to medicines. Similar protests took place around the country in 11 cities including Auckland, Hamilton, Christchurch and Dunedin.
It was a very moving event, with politicians from every political party present to hear the call for improved access to life-changing medicines. Health Minister Andrew Little acknowledged the dedication of the people campaigning for change but made no commitment to improving medicines access.
Are you interested in thePHARMAC Reviewbut unsure how to make a submission?
Rare Disorders NZ is working on a collective response on behalf of all those with medicines access issues who live with a rare disorder.
Individuals are invited to make a submission as well so please consider sharing your views. If you need some help we have some suggested answers for you to use or we can help you write your own responses – emailKimif you need any assistance.
Submissions close Friday 16 July at 8pm.
GP Conference update
Our Chief Executive, Lisa Foster, attended the annual GPCME in Rotorua in early June to represent the rare disorder community.
Lisa spoke to a number of key contacts in the health profession about the challenges facing people living with a rare disorder, and the need for better awareness of these challenges.