NZORD Newsletter 2008 #4 - 17 December 2008

Hello everyone,

In this issue:
1 - Update on the Long Term Conditions programme.
2 - Ministry of Health briefing papers to incoming Minister of Health.
3 - HPV vaccination programme to extend to school-based provision next month.
4 - Funding arrangements for 12 month Herceptin treatment.
5 - More debate on storage and use of Guthrie cards.
6 - Genetic services report jumps two more hurdles - are we in the home straight now?
7 - Review of Health and Disability Commissioner Act and Code of Rights.
8 - Consultation on new investment process for Health Research Council.

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1 - Update on the Long Term Conditions programme.
This programme led by the Ministry of Health has potential for improvements to clinical care services for those affected by rare disorders. That is, if we can convince the Ministry that the task must go beyond common diseases with big budget implications. NZORD has submitted to the implementation team that rare disorders need a specific focus within this programme, and we have participated in a focus group of six groups from the NZORD network, with the programme team. Our representations have been well received and we look forward to further dialogue with them. Updates from the LTC team can be found at this link on the Ministry of Health website.

2 - Ministry of Health briefing papers to incoming Minister of Health.
These papers provide a good overview of the health sector and many of the challenges it faces. Essential reading we suggest for those wishing to engage in debates about sector policy and priorities, and also well written and reasonably concise. Follow these links to pdf versions of the Ministry's description of the NZ health and disability system, and to their briefing to the incoming Minister on the sector's current and future challenges and opportunities. The briefing includes notes on the government's post election plan and future priorities in health. Word versions (in large file sizes) are also available at this link on the Ministry's website.

3 - HPV vaccination programme to extend to school-based provision next month.
This important vaccination programme for prevention of cervical cancer started in September this year with provision through primary care practices. Next year provision will roll out through schools with an extension of ages of girls to whom the vaccine will be offered. Read more about the HPV vaccine programme at this link.

4 - Funding arrangements for 12 month Herceptin treatment.
The government has confirmed its pre-election promise to fund a 12 month course of Herceptin. Click here for more details. Despite some animated comment about this decision and the process implications for other medicine funding, the decision is part of a package of promised increases to medicine funding (an additional $180 million over 3 years) and a promised commitment to improved access to innovative new medicines. Together these factors suggest that at last we will get long-awaited better access to medicines for rare disorders, among many that should have a high priority for funding. NZORD will monitor these developments closely.

5 - More debate on storage and use of Guthrie cards.
The long-running saga of the fate of Guthrie cards stored after newborn metabolic screening tests, took another turn recently with questions raised by the Privacy Commissioner. See this report of her comments from the NZ Herald website and NZORD's response in the Herald the following day. A more detailed submission from NZORD to the Ministry of Health can be found at this link. It appears that extensive public and media debate over many years, including public consultations by the National Screening Unit, and several stakeholder forums, may be getting us closer to the point where recommendations will go to government to decide on the fate of these cards.

6 - Genetic services report jumps two more hurdles - are we in the home straight now?
Now just a little over 5 years old, the National Health Committee's report on genetic services has finally passed through the first stages of the Ministry/DHB joint service planning process and is proceeding to the development of a business case, along with the planned development of a registry for inherited cardiac diseases. It may be optimistic to think so, but perhaps we are in the home straight and might soon see the implementation of much needed improvements to New Zealand's genetic services.

7 - Review of Health and Disability Commissioner Act and Code of Rights.
Commissioner Ron Paterson has announced a review of the HDC Act and the Code of Health and Disability Consumers' Rights. Important issues relating to consent, care and communications are covered by the Act and the Code. Groups are encouraged to read about the consultation and convey your views in a submission. Closing date is 28 February 2009.

8 - Consultation on new investment process for Health Research Council.
The HRC has reviewed its system for allocating health research funds and is now consulting on a proposed new process. Details are available from the Health Research Council's website [link no longer active]. Submissions close 2 March 2009.

NZORD wishes you all well for the holiday period and looks forward to working with you in 2009 to improve the health of all New Zealanders, and especially those with rare disorders. Take care on the roads, celebrate safely, and watch out for those summertime foodborne illnesses. Precautionary advice available from the Food Safety Authority website.

Regards, John

John Forman
Executive Director