NZORD Newsletter 2011 #3 – 31 May 2011

Hello everyone,

In this issue:
1 – New Zealand support groups contribute to rare disease action plan for Australia.
2 – Pharmac review of exceptional circumstances scheme awaited with anxiety and trepidation.
3 – Carers Alliance launches We Care!, a campaign for Carers, NZ’s largest health workforce.
4 – Support groups supporting patients and families through natural disasters – tell us your experience.
5 – NZORD’s submission to Health select committee on Smokefree Environments Bill.
6 – NZORD’s submission to ACART on extended storage of gametes and embryos.
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1 – New Zealand support groups contribute to rare disease action plan for Australia.
Recent momentum for a rare diseases national plan for Australia has been boosted by a conference on the topic held recently in Perth, Western Australia. An important contribution to that meeting was the participation of 5 rare disease support groups from New Zealand, and a representative of the NZ Paediatric Society. We contributed our experiences of policy and service delivery here in New Zealand, and learnt from the way they are developing things in Australia.

Of particular interest to us was the active leadership of the government of Western Australia in doing coordination and groundwork to put such a plan in place for all of Australia. It is very pleasing to see the worldwide momentum at government level for action on rare disease policy and plans, edging closer to our shores. Read more about the conference at this link.

2 – Pharmac review of exceptional circumstances scheme awaited with anxiety and trepidation.
The latest round in the long saga of attempts to improve access to specialised new medicines in New Zealand, is Pharmac’s review of the exceptional circumstances scheme, consulted on early in 2011. Health Minister Tony Ryall and Associate Minister Peter Dunne both indicated in a press release they wished to see this review deal with problems of access to medicines that are not on the Pharmaceutical schedule. There was a significantly improved consultation process undertaken by Pharmac, but initial hopes of some real progress through this review, were quickly dashed when the detail of the consultation document indicated a determination by Pharmac to retain tight criteria, and in fact toughen them up.

The need for a high level policy direction to be set by government in relation to specialised new medicines for small patient populations is very obvious. Pharmac cannot be relied on to produce an acceptable policy framework when their approach is so strongly influenced by their day to day operational priorities and their narrow perspective on the issues involved. They stubbornly refuse to address fairness, equity and community values in their decision making processes, despite clear provisions in the NZ Health Strategy, the NZ Medicines Strategy and other important guiding documents, that they must do so. As we await the new exceptional circumstances policy document due out soon, you can read NZORD’s submission on that consultation at this link.

3 – Carers Alliance launches We Care!, a campaign for Carers, NZ’s largest health workforce.
The 2008 Carer Strategy was an important first start in recognition of the largely unpaid work of those who care for ill, disabled and frail family members and friends. All political parties endorsed that strategy but lately there has been little drive for government agencies to implement it. Carers NZ and the NZ Carers Alliance have launched our country's first social and political awareness campaign for carers.  Click here to read the press release launching We Care! and why the not for profit sector wants to make sure that all New Zealanders, and every political decision-maker, understand who carers are and the issues that are important to 420,000+ Kiwis. Go to www.wecare.org.nz to add your message of support to this campaign.

4 – Support groups supporting patients and families through natural disasters – tell us your experience.
The February earthquake saw a gallant response by local Canterbury health services in very difficult circumstances, and apparently well coordinated national support from other District Health Boards and Ministry of Health officials to deal with the urgent situations arising, and the need to reorganise and relocate many services. No doubt the experience will be well recorded to inform future planning of disaster responses in health and disability services.

Less well recorded or publicised was the role of small support groups that provide information and advice to rare disease patients and their families, yet we have received some reports of significant interventions and problem solving being managed by groups that do not have the people or financial resources of larger organisations. NZORD would like to capture details of the interventions that support groups provided in the aftermath of the quake. We will be collating these to share with health officials for future planning and also sharing lessons with international rare disease networks who have asked us for examples of difficulties encountered by those with rare diseases, and solutions provided. Please help this exercise by sending us a brief summary of any support your group provided to those affected by the quake, and lessons learned along the way.

5 – NZORD’s submission to Health select committee on Smokefree Environments Bill.
NZORD has consistently supported greater restrictions on tobacco marketing and use. We do so because the health impacts of tobacco are such a significant burden on our health system, and as such they are a prime reason those with rare disorders often languish on priority lists for health research, health care services, and medicine access. We have supported the draft Bill in its entirety, and in fact urged even stronger action to reduce tobacco use.

Smokers are not just killing themselves, though that is bad enough. They are indirectly killing us and killing our kids, by the massive burden they place on our health system. It is time things changed dramatically. We have previously submitted to the Ministry of Health (2008) and the Maori Affairs select committee (2010) when previous consultations or enquiries have taken place. Read our latest submission to the Health select committee here in Word or here in PDF.

6 – NZORD’s submission to ACART on extended storage of gametes and embryos.
Assisted reproductive technologies contain important opportunities for people with fertility problems to have children and for at-risk families to avoid serious disorders from occurring in their children. They are also an area of health services that needs close scrutiny to ensure safety, consent and good ethical criteria in service delivery and decision making. A recent law change to the rules for storage of gametes and embryos led to new guidelines being developed by ACART, the Advisory Committee on Assisted Reproductive Technologies. Here is NZORD’s submission in response to ACART’s discussion document [link no longer active].

Regards, john

John Forman
Executive Director