News Video | Policy | GPs | Hospitals | Medical | Mental Health | Welfare | Search

 


Political parties back calls for a rare diseases policy

Political parties back calls for a rare diseases policy


It is time for some optimism. There is now strong political support for our call for a government policy and action plan for rare disorders.

In response to our survey of the seven political parties in Parliament, the Greens, Labour, Mana and NZ First parties all offer positive support for the development of a government policy and action plan for rare disorders. Support is also indicated by United Future and the Maori party, but in less clear terms. National says this issue will be addressed in its health policy release in the next few weeks, but does not indicate what their stance will be.

Click here for the detailed responses from all the political parties to our manifesto questions.

This is a significant advance for the interests of tens of thousands of New Zealanders affected by a rare disorder.

When NZORD was being formed 15 years ago, we were like voices in the wilderness, with many people suggesting we were unlikely ever to get the attention to rare disorders that we were seeking. Now our issues and concerns are mainstream political issues for most parties, as well as being supported by most major stakeholders in the health and disability sector.

Our questions to the parties outlined six issues for priority action under the action plan. We are pleased to note we have positive responses from all parties to our call for improved investment in diagnostic capacity to ensure no undue delays in diagnosing rare diseases, and strong support for improved clinical care access and coordination across District Health Board boundaries to reduce the disadvantages often faced by rare disease patients and their families. All parties have also supported a review of respite care provision to remove barriers to its uptake and improve options for family carers to have some time for themselves.

Disappointingly, the questions about folic acid fortification to prevent neural tube defects, the need for an orphan drugs access policy, and problems with the carer payments policy, did not receive a positive response from the National party. NZORD has identified significant policy failures in those three areas and this was an opportunity for them to address these issues constructively.

The responses from United Future to the action point on folic acid fortification shows a surprisingly poor understanding of the issues and a disappointingly weak response.

But we are very pleased that our advocacy has resulted in widespread political support from most parties on most of the issues we presented to them. The Greens, Labour, Mana, Maori and NZ First parties have all provided strong support for most of our agenda items, while National and United Future have kicked for touch on some of these important issues.

ends

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

TV3 Video: NZ Praised For Sportsmanship After Cricket World Cup Final Loss

New Zealand may have been outplayed in the Cricket World Cup final by Australia, but received praise worldwide for their graciousness in defeat. More>>

ALSO:

Earlier:

Werewolf: Finding Love In Hell

Will it really be 25 years in May since David Lynch’s Wild at Heart won big at Cannes, nabbing no less than the Palme d’Or? Amazing but true, and yet the film that was briefly Lynch’s most feted, now seems to be his most forgotten. More>>

ALSO:

Cricket: Dramatic Win Puts Black Caps In Finals

In Parliament: When Parliament resumed at 2pm the House passed a motion on a voice vote admiring the performance of the New Zealand cricket team in last night’s World Cup semi-final and wishing them well for the final on the weekend. More>>

ALSO:

Moon Shot/Kills Switch: The X Factor Judges Removed

MediaWorks has today decided that Natalia Kills and Willie Moon are no longer suitable to judge The X Factor and have removed them from the show. MediaWorks CEO, Mark Weldon, said that last night on The X Factor both Kills and Moon made comments that were completely unacceptable. More>>

ALSO:

Tessa Nichol: Up Up & Away In The Wairarapa

It’s an overcast morning in the Wairarapa but the mood on the ground in Carterton’s Carrington Park is anything but grey. More than 20 hot air balloons are getting ready to take off into the cloudy sky to mark the start of this year’s Wairarapa Balloon Festival. More>>

Golden Shears: Scotsman Wins Golden Shears Open Final

A Scottish shearer who settled in New Zealand to farm in Taranaki has become the first shearer from overseas to win the Golden Shears Open Shearing Championship. More>>

ALSO:

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news