NZORD Newsletter 2014 #2 - 31 March 2014

Hello everyone,

In this issue: 1 – Pharmac Decision Criteria Consultation – come and have your say.
2 – Carers Strategy action plan – a chance of real progress on respite care?
3 – Outstanding work Malaghan Institute – well done.
4 – Paediatric Palliative Care Clinical Network off to a great start.
5 – NZORD has a meeting room available in Wellington for hire.
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1 – Pharmac Decision Criteria Consultation - come and have your say.Pharmac is hosting a half day consultation on Tuesday 15 April 2014 in Wellington from 9.30am – 12.30pm. This is an opportunity to hear about the changes Pharmac is proposing to their decision criteria, but more importantly, will enable you all to express your views and concerns.  We encourage patients and family supporters of rare disorders to have their say.

NZORD’s recent commentary on Pharmac’s proposal can be read at this link. This highlights the serious concerns we have with their approach. We have also spelt out more detail of issues they should be taking into account in their decision making in a letter on legal issues we sent them last year and which had not yet been adequately responded to. While we push for a long-term solution through the establishment of an Orphan Drugs Access programme managed in the Ministry of Health, in the interim we still need to work hard to influence the way Pharmac makes their decisions. Find out more about their proposed changes, and register for the consultation, at this link on Pharmac’s website. Registration for the meeting should be completed by the end of this week.

2 – Carers Strategy action plan – a chance of real progress on respite care?Despite a lack of concerted action by government to implement the Carers’ Strategy after its introduction in 2008, there is hope for some real progress with the launch of a new action plan by Associate Minister Jo Goodhew. It is very pleasing to see a renewed focus and commitment to action from the government for these valued members of society who care for sick, disabled or elderly family members, and almost all as unpaid work.

The action plan makes respite care for Carers the top priority, and this reflects an issue that NZORD and others in the Carers Alliance have been pushing for, over many years. Carers need to know they have support when they need it and can take a break when one is required. Our priority is to ensure the systems in place are flexible and offer real choice, and avoid the complex rules that have dominated the provision of respite care for many decades.

NZORD and Carers NZ will be part of the governance group overseeing work on the action plan and we look forward to seeing real and meaningful progress on the action plan, and especially on improvements to respite care policies, rather than the mostly token and ineffective efforts of the past 4 years.

3 – Outstanding work Malaghan Institute – well done.New Zealand researchers at the Malaghan Institute in Wellington are among international pioneers in Cancer Immunotherapy, a research technique that has been named ‘Breakthrough of the Year’ by the world leading scientific journal Science. Cancer immunotherapy is causing a “paradigm shift” in the way researchers and clinicians think about treating people with cancer, the journal editors say.

Director Robert Le Gros at the Institute says “this global recognition of the wave of positive results emerging from cancer immunotherapies around the world is great news for our researchers, and more importantly, for all New Zealanders.” He says the Malaghan’s researchers have been researching immunotherapy for 20 years and that it shows the most hope as a treatment for cancer.  They are currently running a clinical trial on Melanoma patients and Professor Le Gros says that he believes this year is going to be very important.  “Our clinical trial of our own immunotherapy approach against melanoma will test whether our vaccine has the ability to induce the most effective anti-tumour immune responses.”

Read more about the Malaghan Institute and the Science article on cancer immunotherapy at this link.

4 – Paediatric Palliative Care Clinical Network off to a great start.Paediatric Palliative Care is a hugely important service for many families affected by rare disorders and NZORD has worked with the  Ministry of Health and Paediatric Society over several years to get sustained improvements to these services. In the past palliative care has grown as an adult service for cancer patients and improvements needed to be made to extend the services to a wider group of conditions and also to children. The World Health Organisation recently adopted a resolution on the importance of palliative care and has specific focus in their policy about the needs of children.  Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.

Improvements to palliative care services for children and young people are being made locally.  The Paediatric Society has led on the development of a clinical network and NZORD is pleased with the efforts being made to improve specialist outreach and support for local Palliative Care delivery by local DHB staff, including regular training sessions. Valuable resources have been put together for families by Starship Foundation and the Paediatric Society, on the Kidshealth website. This is a helpful resource for families, providing information on palliative care, what is involved and what families can expect on this tough journey.

5 – NZORD has a meeting room available in Wellington for hire.NZORD has a meeting room that is available at very reasonable rates for rare disease groups wanting a meeting place in Wellington city. The room has a meeting table that can seat up to 10 people comfortably (12 at a squeeze), a small kitchen to prepare hot drinks and snacks, and enough space in the room (8m x 6m) to spread out for working sessions and small groups. The room also comes with an electronic whiteboard, printer, projector and screen.  Bookings can be made for weekday, evening or weekend use. A modest fee will be negotiated to cover costs, ranging from just $50 for a full day for a rare disease group. There is plenty of nearby parking for evenings and weekends, but parking is tight during normal office hours. Enquiries are welcome, call us on 04 471 2225.

Regards, john

John Forman
Executive Director