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NZORD Calls For Action On "Do-Able" Initiatives

NZORD - the New Zealand Organisation for Rare Disorders

This is a single issue newsletter, triggered by recent media comment on the private umbilical cord blood bank.

The frustration of responding to many such issues in isolation, has led me to write today to the Ministry of Health calling for a comprehensive strategy and action plan to improve knowledge, care and treatment for rare and genetic diseases.

The lack of a clear strategy leads to inequality of access to health care, and disparities in health status, for up to 8% of the population.

There are many improvements that can be made now to services and treatment for this significant group of the population, and it is time for the Ministry to recognise the duty it has to this neglected part of the population.

He is the full text of the letter:

The Director-General of Health
PO Box 5013

Dear Dr Poutasi,

Cord Blood Banking Debate Highlights Rare Disease Policy Gaps

NZORD has noted with some concern the promotion of the private umbilical cord blood bank recently set up in New Zealand. Despite recent changes to their website, the likely benefits seem overstated and many people may be misled into an expensive investment of dubious value. We are also surprised to note that a public hospital laboratory is doing technical work for this bank.

However our larger concerns are:

(1) the obvious value of a publicly operated umbilical cord blood bank for all who need matching haematopoietic stem cell transplants. Wider social benefits, and the specific shortages of available transplant stocks for Asian, Maori and Pacific nations, are some of the strong ethical and health policy arguments for government to provide such a bank as a public health service.

(2) the importance of taking a comprehensive approach to resources and services for rare and genetic conditions.

We urge the Ministry to consider as a group many small but significant steps that can be taken, and which when all implemented, will mean substantially better levels of prevention, diagnosis, treatment and care for those affected by rare and genetic diseases.

Things that can be done technically and cost-effectively NOW include:

* New technology (TMS) to expand newborn screening to detect and treat many more serious or fatal diseases (still "under review").
* Newborn hearing screening to improve learning and socialisation of deaf babies (still limited to pilot programmes).
* Improved diagnostic techniques for many metabolic diseases, using the TMS machine (dependent on the newborn screening decision).
* Pre-implantation genetic diagnosis (currently awaiting approval).
* Folate fortification of food to prevent neural tube defects (currently "under review").
* Improved pre-natal screening for chromosomal abnormalities (still at an early policy review stage).
* Umbilical cord blood bank development (currently no policy).
* Improved ante-natal screening for diseases transmittable from mother to baby (no comprehensive policy yet developed, though HIV considered in isolation).
* More equitable access to orphan drugs for rare diseases (no policy yet on a separate orphan drug budget).
* Implementation of the genetic services review (no progress yet, more than a year after the seventh major report on the development of genetic services in New Zealand).

We appreciate the importance of prioritising and rationing health resources, yet it seems there is always another major policy priority, another epidemic to be managed, another workforce or service crisis to be dealt with, that keeps our important issues on the back burner and delays progress on them.

The result is a lack of equity in health provision, and even disparity in health status, for many families affected by rare and genetic diseases. We note that US and European policies now recognise the need for dedicated policy and action plans for rare diseases, as knowledge and technology enable us to do more for more of them, and to reduce inequities in health care.

We note the percentage of the population affected by rare disorders, when taken together, is up to 8% of the whole population. This equates to the total Pacific population in New Zealand - a significant reason for a focussed approach.

We note that an investment of over $200 million was made to prevent 16 deaths annually and prevent other significant morbidity, from meningococcal disease. Implementing the list we have made would result in similar numbers of lives saved but substantially more morbidity avoided, with an investment of around $20 million (including associated health research).

We urge the Ministry to recognise the need for a rare and genetic diseases action plan and to allocate resources to accelerate implementation of these areas of identifiable progress in health gains.

Yours sincerely,

John Forman
Executive Director, NZORD
New Zealand Organisation for Rare Disorders

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