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NEWS POSTS

ADVOCACY UPDATES

Feb 2024 – Request for Review of Scoliosis Screening

Following concerns about late diagnosis of scoliosis in some patients with PWS, we sought the advice of international expert Dr Harold van Bosse, and wrote to New Zealand’s orthopaedic, endocrine and paediatric groups to request a review of screening practice and suggesting the implementation of a radiographic screening programme for patients with PWS in New Zealand similar to that described by Dr van Bosse.
PWSA(NZ) letter re. scoliosis screening

Nov 2023 – Pharmac proposal to fund testosterone gel

We made a submission on Pharmac’s proposal to widen testosterone treatment types to include a gel option. Since the discontinuation of Andriol, a new capsule brand is not available to those first prescribed testosterone after Nov 2021 at this stage. Our submission requested that a tablet / capsule form of testosterone be made available to all patients with PWS.
PWSA(NZ) Submission to PHARMAC – Testosterone
Feb 2024 PHARMAC Response: “Unfortunately, we were unable to secure a Medsafe approved testosterone capsule product from this procurement process. We will continue to explore options that could address an unmet health need for people requiring testosterone.”

March 2023 – Adult Decision-Making Capacity Law

Te Aka Matua o te Ture | the New Zealand Law Commision are reviewing how the law should respond when capacity for decision-making is affected and seek feedback on how the law could be improved. The PWSA submitted a response outlining some concerns specific to Prader-Willi Syndrome. The Law Commission are planning to publish a second issues paper in the second half of 2023. This will contain their detailed analysis of issues with the current law, and they will seek feedback on options for reform.
PWSA Submission to the Law Commission
Update June 2024 – Our response to the Second Issues Paper mainly focuses on Q.6 and the the proposed single test for decision-making capacity which identifies four factors for assessment: PWSA Submission on Second Issues Paper

March 2022 – Education Action – Highest Needs Review

The Highest Needs Review is taking place as part of a commitment outlined in Priority 4 in the Learning Support Action Plan 2019-2025: flexible supports for neurodiverse children and young people. The review team will develop a report for the Minister with recommendations for Cabinet in October 2022.
PWSA(NZ) Submission to the Highest Needs Review

March 2022 – Covid-19 Antivirals Consultation

PHARMAC announced a brief consultation period on the eligibility criteria for 2 oral antiviral medications due to arrive in New Zealand between the end of April and June: Pfizer’s Paxlovid and Merck’s Molnupiravir. The supply will be limited and the restrictive criteria proposed would exclude some of our most vulnerable members. Two days after feedback closed, PHARMAC announced tightening of the criteria for Remdesivir, an antiviral administered via injection. As we wait to hear confirmation of the criteria for the oral antivirals, we wait in hope that access criteria will not follow suit in being made more restrictive.
PWSA(NZ) Submission to PHARMAC – Covid-19 antivirals

Dec 2021 – Pae Ora Bill – Health System Reform

A planned health reform will disestablish the DHBs in place of a new structure with new accountability arrangements. The Pae Ora Bill outlines the core changes planned, which include the establishment of Health New Zealand, the Māori Health Authority, and specific health strategies for hauora Māori, Pacific health, and the health of disabled people. The PWSA(NZ) made a submission on this Bill seeking acknowledgement that the rare disorder population are a significant population group that have been overlooked in this Bill. We requested that a health strategy for rare disorders be added in order for the Bill to align with its purpose of improving the health of all New Zealanders and achieving equity. We also did not support clauses which exclude Pharmac from the principles in this Bill surrounding equity and engagement with population groups. We asked that equitable performance be expected from Pharmac and that legislation be amended to reflect issues raised in the recently published Pharmac Review Interim Report.
PWSA(NZ) Submission to Parliament on the Pae Ora Bill

Oct 2021 – Content of 2023 of Disability Survey

Stats NZ consulted on the content of the 2023 Disability Survey, the first since 2013. This survey is the main source of information for estimating the number of disabled people in New Zealand and provides information on how well they are faring across a range of outcomes.  Government and other organisations use this data to understand the needs of disabled people and plan services for them. Therefore, it is important to provide feedback on the content of the survey to ensure relevant data is collected from the PWS and rare disorder communities.
PWSA(NZ) Submission to Stats NZ

July 2021 – Medicines Access – Review of PHARMAC

The Government followed through on an election promise to conduct an independent review into PHARMAC (Pharmaceutical Management Agency). Feedback was sought to contribute to this review process and help form a proposal on how PHARMAC can best serve the needs of New Zealanders. The review is due in December.
PWSA(NZ) Submission to the PHARMAC Review Panel
Pharmac Review Interim Report – published Dec 2021

July 2017 – Growth Hormone Access

Our submission to Pharmac to widen access until 18 years has been declined. We anticipate new evidence becoming available and we intend to keep trying. In the meantime, please contact us: a.) if your child has stopped GHT and you have observed effects on energy level, body composition, weight gain, mood or overall quality of life; b.) if your child later resumed treatment and you observed benefits; or c.) if your child started treatment as a teenager or adult.
Submission to PTAC – February 2017

Dec 2016 – Education Action – Learning Support Update

On November 24, Hekia Parata announced the next steps in the Learning Support Update with the proposed changes to be phased in with a pilot beginning in the Bay of Plenty early 2017. We offered input to the changes in the form of letters to Parliament, writing to all MPs with education or disability portfolios and Education and Science Select Committee members. We also sent letters to other political party MPs seeking comment.
PWSA(NZ) Letter to MPs

Dec 2016 – Growth Hormone Access

P​harmac​ considered submissions and removed the growth velocity barrier and allowed children to start treatment from 6 months old without the need for collecting growth data – in effect from Jan 2017. Unfortunately, extending treatment until 18 years​ was not approved. We met with Pharmac in September to discuss our case with senior staff​,​ including Medical Director Dr John Wyeth. We were advised that to achieve our goal of funded GH for all people with PWS​,​ a step​ by step approach ​is recommended ​- under 2​’​s, up to 18 years, and then adults. We are following this advice. Thank you to all who made submissions​.
PWSA(NZ) Submission to PHARMAC – Sept 2016

Nov 2016 – Education Action – Education Amendment Bill

We submitted a response to the Education (Update) Amendment Bill and were given an opportunity to speak to our submission before the Select Committee, December 2016​. We also forwarded questions to Kelly Dugan of SmileDial for his meeting with the Minister for Disability Issues and MoE staff members.
PWSA(NZ) Submission – Education Amendment Bill

Sept 2016 – Education Action – YouthLaw Research

The PWSA helped to fund research by YouthLaw into access to education for children with special educational needs. Their report was published in Sept 2016 and is an excellent summary of the problems facing our children.
YouthLaw Report: Challenging the Barriers

Sept 2016 – Growth Hormone Access

Pharmac advised their Endocrinology Subcommittee recommended access for funded GHT is widened to include children with PWS from 6 months old and the requirement for slow growth be removed, but felt there was insufficient evidence to extend treatment to 18 years. The recommendation went to PTAC in November to endorse or decline. When approved by PTAC, it required funding approval and we made another submission regarding funding priority. Having voiced concerns regarding timeframes and our disappointment regarding some decisions, Pharmac agreed to a meeting. We also met with NZORD rare disease advocates to see how they can help.
PWSA(NZ) Submission to PHARMAC – Dec 2015

Dec 2015 – Education Action – Education for All

In November 2015 we consulted with members on key educational issues affecting our children with PWS. We took those concerns to a meeting with IHC advocates, Education for All and other disability support groups. Following this first meeting, issues raised and possible solutions discussed were to be taken to further meetings with main bodies in the education sector and then to the MoE. We also made a submission to the update of the 1989 Education Act.
PWSA(NZ) Submission – Education Act Update

Sept 2015 – Education Action – Select Committee Inquiry

We submitted a response to the Education and Science Select Committee’s Inquiry into the Identification and Support for Students with the Significant Challenges of Dyslexia, Dyspraxia and Autism Spectrum Disorders. The inquiry report was vaguely promising, but many areas of concern remained.
PWSA(NZ) Submission to the Select Committee Inquiry