NZORD Newsletter 2011 #4 --26 July 2011

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone,

In this issue:

1 – Pharmac’s new exceptional circumstances policy fails to deliver for orphan diseases.

2 – New national services confirmed. Some good things we secured in the new service specifications.

3 – Carers Alliance We Care! campaign for Carers, gets 12,000 likes on Facebook, 500 messages to the Prime Minister.

4 – Seeking information on support groups working with patients and families through natural disasters.

5 – NZ Medical Association on fairness in the health system.

6 – Joint New Zealand and Australian medicines regulatory agency back on the agenda.

7 – Select Committee report on clinical trials released.

8 – Smokefree Environments Bill passed into law.

9 – Missed a newsletter?

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1 – Pharmac’s new exceptional circumstances policy fails to deliver for orphan diseases.

Despite some positive changes to their policy for funding medicines not on the pharmaceutical schedule, Pharmac have conspicuously failed to deliver on expectations of improved access to highly specialised medicines for rare “orphan” diseases. Those are just not our words, they quote Pharmac’s Chief Executive who said explicitly during a recent briefing on the new exceptional circumstances policy announced late last month, that Pharmac had not solved this issue.

NZORD will soon publish a detailed assessment of the new policy, but in the meantime draw attention to statements made by representatives of all the major political parties at a recent forum on health policy, that definitive action is needed to provide improved access to these medicines. There are significant doubts among the politicians that Pharmac is up to the task. Stripping them of that responsibility and managing it elsewhere, as is done for some other highly specialised medical treatments, was openly discussed by politicians.

2 – New national services confirmed. Some good things we secured in the new service specifications.

Things do move slowly in the health sector, but at last the high level funding and contracting decisions have been taken to put national services in place for Clinical Genetic services, Paediatric and Adult Metabolic services, Paediatric and Perinatal Pathology services, and Paediatric and Congenital Cardiac services. As the new structures bed in over the next year, we can be pleased that changed we pushed for in response to feedback from support groups, have resulted in new service specifications that will:

• Reduce the likelihood that where you live will determine if you get access to these specialist services or not.
• Ensure equitable access to the service within timeframes determined by the priority of your need.
• Increase the chances that if best for a child’s future care, they will stay linked to the specialist service once an adult.
• Have the service advise newly diagnosed patients and their families about relevant community resources, including support groups, and strengthen the services’ links with support groups.

We hope these new services and the way in which their roles and responsibilities have been constructed, will help spur better practice in other health services. However there are a multitude of different services, each with their own specifications and practices, and change takes a long time in health. We will continue to work with the National Health Board and the Paediatric Society to explore ways in which these improvements can be spread across other services.

3 – Carers Alliance We Care! campaign for Carers, 12,000 likes on Facebook, 500 messages to the Prime Minister.

At the end of May 2011 the Carers Alliance launched its public awareness campaign about the 420,000+ carers (NZ’s biggest health workforce) who provide mostly unpaid support for ill, frail, disabled and injured family members and friends. It is aimed at the public at large as well as political parties, with special emphasis on seeking the support of the Prime Minister for more recognition and support for carers across all government agencies. Read more about this campaign on the We Care! Campaign website. Use the website links to add your message of support to the campaign.

4 – Seeking information on support groups working with patients and families through natural disasters.

Thanks to those groups that have provided information on the challenges faced, lessons learnt and the solutions found to working through recent natural disasters. We are seeking more responses. If your group has an informative story to share, send that to us to share nationally and internationally with rare disease networks and patient alliances.

5 – NZ Medical Association on fairness in the health system.

The recent publication of the New Zealand Medical Association’s Health Equity Position Statement is an important contribution to the health resource allocation debate in New Zealand. Though focussed mostly on social determinants of health, the equity principles in this statement are very relevant to the disadvantage experienced by many with rare disorders, when decisions are made about health services, pharmaceutical funding, and disability support.

6 – Joint New Zealand and Australian medicines regulatory agency back on the agenda.

Plans for a joint medicines regulatory agency were scuttled in 2007 by political manoeuvrings, but in June 2011 the Prime Ministers of both countries announced plans to kick start the process again. This move will improve efficiency and reduce the vulnerability that New Zealand faces as a result of the small number of highly skilled people available to carry out this essential work. The announcement about the joint regulatory scheme is on the website of Medsafe.

7 – Select Committee report on clinical trials released.

After lengthy deliberations the Health select committee has reported to Parliament on proposals to improve the environment for clinical trials to take place in New Zealand. The committee’s report is available on the Parliamentary website. Though apparently motivated primarily by economic opportunities, the report does start with the importance of holding patients’ safety paramount, which is a very good start for this important topic. The government’s response to the committee’s recommendations is due in September.

NZORD believes there are considerable potential benefits for patients and clinical researchers from an increased number of clinical trials being done in New Zealand. In particular, those with rare disorders can potentially get earlier access to innovative new therapies. We look forward to the government’s response to this report.

8 – Smokefree Environments Bill passed into law.

Just two weeks ago Parliament passed into law the Bill that will abolish displays of tobacco products This is an important step in reducing the health effects of tobacco use. Read the speech from Associate Health Minister Tariana Turia, who promoted this bill through Parliament, with significant support from the Health and Maori Affairs select committees. Next action on the legislative agenda is a requirement of plain packaging for all tobacco.

NZORD made a submission in favour of this legislation. We have noted the massive financial burden tobacco imposes on our health system, as well as on the health of smokers. Together these burdens deny fair access to those with rare disorders who need improved access to diagnostic and treatment services. We look forward to supporting other restrictive legislation in the next Parliament.

9 – Missed a newsletter?

Check out the past issues on our website. Also, see our recent press releases and submissions and check back for any issues we have dealt with since 2001 in our online archives.

ENDS

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