NZORD Newsletter 2008 #2 - 7 May 2008

Hello everyone,

In this issue:
1 - Not-for-profits celebrate the Carers' Strategy for New Zealand.
2 - Cervical cancer vaccination programme an important public health measure.
3 - Minister intervenes to rescue Genetic Services report and initiate rare disease policy work.
4 - NZORD's submission on review of tobacco displays - important implication for rare diseases.
5 - Public Health Bill before Select Committee - NZORD's submission.
6 - 2008 Genethics competition - Design a poster about designing a child.
7 - Screening symposium highlights need for greater dialogue with support groups.
8 - Cartwright Report seminar - 20 years on, what have we learnt?

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1 - Not-for-profits celebrate the Carers' Strategy for New Zealand.
Nearly 4 years of solid work by the NZ Carers Alliance, in partnership with officials in government agencies, has delivered the government's Carers' Strategy and Action Plan which was recently launched in Parliament. People supporting disabled, chronically ill and ageing family members will receive long-overdue recognition and improved support. The vision is that carers will have opportunities to participate in family life, social activities, education and employment, and will have their voices heard in decisions that affect them. Immediate actions include work to improve respite options, and ongoing work will improve information, help maintain the wellness of carers, and investigate financial payments to carers. Read more on the websites of Carers New Zealand and the Ministry of Social Development.

2 - Cervical cancer vaccination programme an important public health measure.
NZORD welcomes the government's decision to fund the cervical cancer vaccine programme for teenage girls. This is a very important public health measure that provides an excellent opportunity to control a major cause of cancer among women. We support the significant investment made in this vaccine to improve health outcomes for our population. Coupled with a government decision last year to invest significant funds in the pneumococcal vaccine, we wonder if these decisions signal evidence of a departure from the narrow cost-utility approach that had been so central to medicine decision making in the past decade. The new Medicine Strategy suggests this also, and we look forward to more strategic investment decisions on medicines generally, in the near future. Read more about the vaccine decision on the Ministry of Health website.

3 - Minister intervenes to rescue Genetic Services report and initiate rare disease policy work.
NZORD is delighted to report a very successful outcome to our recent briefing with Health Minister David Cunliffe. We have been pushing hard for the implementation of the genetic services report since its publication by the National Health Committee in 2003. We have also promoted the need for centralised responsibility for policy dealing with rare disorders. Both items were agreed to by the Minister. Breaking the log-jamb of official neglect of rare diseases, has been a long-term priority for us. The Minister's positive response has given clear direction to officials to make progress, and we are very pleased that he has given an undertaking that we will be involved in the development of this work. Click here for more detail and our briefing to the Minister.

4 - NZORD's submission on review of tobacco displays - important implication for rare diseases.
This topic may seem a bit unusual for NZORD to be commenting on. The impact of smoking on the health of the population is certainly not a rare thing. It is one of the most common avoidable causes of health problems in society. But further analysis shows it is a matter of great interest to us because of its effect in blocking our access to health service through the sheer volume of health problems that smoking causes. Read the consultation document [document no longer available at this link, though a review of the consultation process is available] from the Ministry of Health. Click here to read our submission to the Ministry.

5 - Public Health Bill before Select Committee - NZORD's submission.
The Public Health Bill is an important update of old legislation. A key change is greater recognition of non-communicable diseases and provision of public health initiatives to reduce their impact. However the opportunity to give specific recognition to rare diseases and their collective impact as a significant public health problem, has not been acted upon. Nor is screening adequately addressed. Click here to read more about the Bill and NZORD's submission to the select committee.

6 - 2008 Genethics competition - Design a poster about designing a child.
The fifth annual Genethics competition for secondary school students is now open. This year it's a poster we want. Students are asked to design a poster about designing a child, considering the pros and cons of gender balancing of families. Entries close 25 July. More details at this link.

7 - Screening symposium highlights need for greater dialogue with support groups.
The recent screening symposium organised by the National Screening Unit was very successful in drawing together a wide range of professionals, officials and support groups to discuss policy, ethics and practicalities of screening programmes. Notable in the discussions were the complexity of decision-making about screening programmes and of communicating this complexity to the public. Putting in place a more structured approach to dialogue with support groups is one way that better information flows can occur in both directions, allowing greater understanding of decision criteria and stakeholder interests. One obvious outcome of the symposium was the need for greater investigation and advice on screening options that fall short of criteria for a formal screening programme, yet were matters of great interest to some patients, support groups and professionals, for opportunistic screening. Click here [link no longer active] for links to the symposium programme and speakers presentations.

8 - Cartwright Report seminar - 20 years on, what have we learnt?
The University of Auckland is holding this one-day seminar on 29 August 2008. Details of this and other important sector events relevant to support groups can be found on our Events Calendar page.

Regards, John

John Forman
Executive Director, NZORD