Rare Disorders NZ: December Update

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In this issue

As this year draws to a close, reflection of the intensity of the challenges is balanced by acknowledgment of the successes attained in 2021, including shifts in mindsets of our leaders and kaitiaki to acknowledge people with rare disorders as a community of scale with clear needs.

This sentiment was recently expressed by Members of Parliament from across different parties during our oral submission at the Health Select Committee. There was overwhelming agreement that a National Framework for Rare Disorders is a good idea. National party MP Matt Doocey stated that if the cost of $500,000 would be sufficient to get this Framework developed, then the Ministry of Health could support the implementation as part and parcel of the overall Pae Ora Future of Health reforms, so the costs could be mitigated. The next steps in this process will be vital, as equity and inclusion for people with rare conditions require action and commitment. 

Change can only come from awareness, and it is testament to our community; to all the engaged leaders, the whānau and individuals with rare disorders, or those who support them who step forward despite their own challenges to make a difference, to speak their truth to power and to have the tenacity to repeat that many times. It is this tireless advocacy; this resolve and combined strength that will be rewarded with recognition and action to improve the health and wellbeing for people with rare conditions. Thank you for all you do and for the shared belief that New Zealand needs to be Fair for Rare.

Ngā mihi,

Lisa Foster

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What a great way to finish off the year by celebrating the UN General Assembly’s formal adoption of the first-ever UNGA Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families”. This is a huge achievement after years of tireless advocacy and something the global rare disorder community can be truly proud of.

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This once-in-a-lifetime health reform and major restructure of the health system is in the process of being designed, and offers opportunity for input via submissions to the Pae Ora Legislation Committee on the Pae Ora (Healthy Futures) Bill. The restructure is scheduled to be implemented from July 2022.

We made a submission and also supported 28 rare disorder support groups to make submissions as well. Our submission focuses on ensuring people living with rare disorders and their carers are recognised as a public health priority.

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Our second-ever Voice of Rare Disorders Survey was rolled out at the beginning of November and we were thrilled to receive such a high response rate. With no official data collection on rare disorders in New Zealand, this survey is so important and the only way we can quantify the challenges of living with a rare disorder in New Zealand.

We look forward to launching the results of the survey on Rare Disease Day, 28 February 2022.

With the spread of COVID-19 gradually moving throughout the country, we wrote an Open Letter on behalf of the rare disorder community to the Government calling on them to fund the medicines on PHARMAC’s Options for Investment list immediately to protect the rare disorder community and reduce the need for hospitalisation. COVID-19 is only going to put more pressure on an already stretched health system, which is why it is more important than ever for the Government to increase PHARMAC’s funding for medicines for our community.

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Our Chief Executive Lisa Foster was invited by Rt. Hon. Helen Clark to speak at an international virtual event with high level stakeholders in October to bring attention to spinal muscular atrophy (SMA). Rt Hon Helen Clark offered the opening inspiring statement to explain rare disorders are a community of scale and demand global attention and equity to leave no one behind.

Lead advocate for SMA NZ, Fiona Tolich and trustee of Patient Voice Aotearoa gave a passionate statement to highlight the need for equity in access to medicines in NZ. The event was initiated by the Permanent Mission of Ukraine to the United Nations and was attended by senior UN representatives, representatives of diplomatic missions in New York, major UN entities such as UNICEF, WHO, UNDP and UNFPA, pharmaceutical company representatives, patient advocacy groups and NGOs.

The event provided a powerful opportunity for SMA to get global attention. Despite three treatments being developed and available for SMA, there is currently no funded access to any treatment for SMA in New Zealand.

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For International Children’s Day this year we wanted to celebrate our precious rare tamariki. We organised a colouring competition and received over 80 beautiful entries. The judge was the amazing illustrator Rebecca Gibbs who had a tough time deciding the finalists among all the outstanding entries. Following judging, the entries were handed to Labour MP Dr. Liz Craig to deliver to the Prime Minister in time for Children’s Day.

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Rare Disease Day on 28 February is fast approaching and in the lead-up we are getting excited for the annual Rare Beer Challenge fundraising event hosted by Fortune Favours. Eighteen local craft breweries are busy at work coming up with their wackiest rare beers, so if you are in Wellington on 25 February we would love you to join us for this fun, social event.

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COVID Vaccine Update

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Thank you for all your support during this challenging year. We look forward to connecting with you in 2022.

The team at Rare Disorders NZ

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