NZORD - Newsletter September 3
NZORD - the New Zealand Organisation for Rare Disorders
1 – ICORD launches Yukiwariso declaration on the need for rare disease policy and action plans.
2 – Consultation on paying family carers to provide disability support.
3 – Submission from NZORD to select committee on Gambling Harm Reduction Bill.
4 – Folic acid decision a severe blow to child health.
5 – Health Passport to assist communications in hospital or care settings.
1 – ICORD launches Yukiwariso declaration on
the need for rare disease policy and action
The International Conference on Rare Diseases and Orphan Drugs has launched a declaration providing advice to governments and health authorities world wide on the need for specific policy and action plans for rare diseases. A summary version of this declaration was published in August 2012 in Acta Paediatrica and the full version is available on the website of ICORD.
The title of the declaration, Yukiwariso, is the Japanese name for the rare Hepatica flower that breaks through the late snow in cold northern climates, to herald spring and the new life and hope it brings. The declaration provides principles and guidance points for the development of rare disease action plans, and encourages patient advocacy groups to actively engage with their health officials and governments for this purpose.
2 – Consultation on Paying Family
Carers to Provide Disability Support.
This consultation document from the Ministry of Health describes options for paying family carers who provide disability support to disabled adult family members. The consultation is required because the government was defeated at the Human Rights Review Tribunal and in several court cases over its policy of unlawful discrimination against family members.
The impending arrival of a fairer deal for families is a major step forward in health and disability policy in New Zealand, and a major triumph for upholding human rights and non-discrimination. But work needs to be done to help ensure the policy says the right things. We strongly encourage all support groups to take a close interest in this consultation as it has major implications for the rights and interests of carers in New Zealand.
3 – Submission from NZORD to
select committee on Gambling Harm Reduction
This has been a tricky issue to deal with because there is a tension between the inherent harm of gambling, and the dependence many support groups have on income from gambling proceeds. NZORD also considered the Bill to be clumsily worded and in need of clarification to achieve its good intentions. Read our submission to the select committee.
4 – Folic acid decision a
severe blow to child health.
Despite solid evidence of positive benefits of folic acid (vitamin B9) in reducing neural tube defects, and an absence of any credible evidence of harms, the Food Safety Minister decided in August to revoke the planned food standard, which had been deferred by political manoeuvring 3 years ago. Fortification of bread with folic acid will now be an entirely voluntary matter for the baking industry to decide.
The new standard which came into force late September, is a blatant abrogation of the Minister’s responsibility to protect public health. She has delegated this important public health initiative to an industry that has shown no commitment to implement an effective programme. A very sad time indeed for public health in New Zealand, and a very bad thing for about 20 families each year whose babies will die from or be serious disabled by this preventable harm. Read NZORD’s submission on the consultation and our press release when the decision was announced.
5 – Health Passport to assist
communications in hospital or care settings.
The Health Passport is a document designed to assist nursing and medical staff to understand the care and support needs of people with disabilities. The Passport belongs to the disabled person, is kept and updated by him or her, and comes with the person to hospital or a care setting. The Health and Disability Commissioner has developed the Health Passport for New Zealand, based on a British initiative and in partnership with other interested agencies. They envisage that it has potential to support a wide range of health and disability consumers, not only those with intellectual disabilities. Read more about the health passport, or click here to download a copy in various formats.
Five New Zealand hospitals commenced using the passport in late 2011 and several more are beginning its introduction this year. Please note that not all hospitals or care providers may have yet started orientation and use of the passport. If it is relevant to you and your family, you could help them get familiar with it, and encourage them to include this very useful best practice tool in their procedures.