NZORD Newsletter 2006 #1 - 23 February 2006

Hello everyone,

In this issue:
1 - Great news for newborn metabolic screening.
2 - Discussion document on using cells from established embryonic stem cell lines.
3 - Unexpected problems with PGD funding.
4 - NZ Carers Alliance examines needs assessment and service coordination system for disabled people.
5 - Continued good progress in MeNZB vaccine programme.
6 - Things to look forward to this year.
7 - Events Calendar for 2006.
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1 - Great news for newborn metabolic screening.
Today’s announcement from the Starship Foundation of funds to purchase a new high-tech machine (a Tandem Mass Spectrometer) to improve newborn metabolic screening is great news for the health and wellbeing of New Zealand babies. This smart new machine has the capacity to do existing newborn screening tests more efficiently and accurately, and will be able to assist with faster diagnosis for many other conditions when children present with complex health problems. Another great advantage is the capacity to increase the number of conditions tested for from the Guthrie card heel-prick test given to babies at a few days old. Many countries have increased the range of conditions tested for from the seven we do here in New Zealand, up to a couple of dozen. Decisions are yet to be made on increased numbers of conditions tested for, but NZORD expects this will be something of a formality because of the proven ability to substantially improve the health of babies, and in some cases save their lives. We certainly support these wonderful advances in the technology.

2 - Discussion document on using cells from established embryonic stem cell lines.
The Ministry of Health is seeking feedback on draft guidelines for the use in research of cells obtained from human embryonic stem cell lines, and submissions close on Friday 3 March 2006. This is an often controversial area of discussion and it is important to distinguish that the guidelines would be only about the use of cell lines that have been previously obtained from human embryos. It is NOT about using existing embryos to generate cell lines. That topic will be the subject of discussion documents and consultations later this year by ACART, the advisory committee on assisted reproductive technology. The Ministry’s discussion document can be found at this link on the Ministry of Health website.
NZORD has noted that the proposals are about the use of cells which have been obtained in an ethically approved manner, with consent, and only from embryos that were created for fertility treatment and are no longer required. It is intended to make a submission in support of the draft guidelines proposed by the Ministry. Any comments your group would like to add should be sent to the Ministry before 3 March, or can be forwarded to us for consideration for inclusion in our submission.

3 - Unexpected problems with PGD funding.
The very good news prior to Christmas of government funding for pre-implantation genetic diagnosis for couples at risk of a repeated severe inherited disease in their family, has been deflated somewhat by procedural problems getting the money to flow from District health Boards to the IVF/PGD clinics. It seems that contracting process and other delays have prevented DHBs from sorting out the flow of money. While this may sound a minor issue that will soon be resolved, it is important to note that families who have waited anxiously for several years for the legislation to be passed and for the PGD guidelines and the funding to be approved, now find this further delay unbearable.
NZORD has been supporting several families trying to get the system unblocked. We urge the DHBs involved to confirm retrospective funding for those couples wishing to start their IVF/PGD cycle immediately. The numbers are small yet the stress on them is enormous, and this situation should not be allowed to continue unresolved.

4 - NZ Carers Alliance examines needs assessment and service coordination system for disabled people.
The system of needs assessment and service coordination for disability support (NASC) is a frequent bone of contention for families. Uncertain standards, regional variations, excessive detail and lack of a whole family approach are often cited as problems. And surprisingly the NASC agencies that do a core government function of allocating resources, are usually non-government organisations with their own philosophy and approach, and no clear appeal processes are in place. Recently the NZ Carers Alliance representing 35 national organisations held a half-day workshop with Ministry of Health officials to explore some of the problems. One outcome from the meeting was a welcome commitment from the Ministry to continue discussions on the system and work to improve it.

5 - Continued good progress in MeNZB vaccine programme.
Latest figures from the Ministry of Health show nearly 3 million doses of the Meningococcal B vaccine administered, with more than 900,000 children and young people having received three doses. The enthusiastic uptake of this programme shows confidence in the care taken by public health officials to prepare and test the vaccine, and plan the publicity and delivery to the public at large. Detailed figures and weekly reports are available at this link on the Ministry’s website.

6 - Things to look forward to this year.
If anyone was worried that the third term of this government might lead to a slowdown in health and disability initiatives, they can rest assured that will not be the case. Of particular interest are the following pieces of policy work that are on the work plan of various agencies during this year, and which offer progress for many of the interests of rare disease support groups:

  • Expansion of newborn metabolic screening
  • A review of the New Zealand Disability Strategy
  • A review of medicines policy
  • A review of long term disability supports across all government sectors (ACC, aged care, disabled children and adults, chronic health conditions, and more)
  • Work to develop a Carer Strategy for unpaid carers of disabled and ill family members

Of course there are many other things that need doing too, some of them pressing issues that are not on this list, but taking a positive approach at the beginning of the year, it is clear that the Year of the Dog is not going to be a dog of a year for us.

7 - Events Calendar for 2006.
Check out the list of support group activities posted in our Events Calendar, and drop us a note if your group has something to be added to the list.

Regards, John

John Forman
Executive Director