Charities Commission Registration CC22512

Cystic Fibrosis Association confirms pro genetic modification stance.

The Cystic Fibrosis Association of New Zealand National Conference took place on the first weekend in May 2003. Nicky Churton updated the Conference on the progress being made by the CF Lobby Group on the public debate about genetic engineering.

She detailed the need to be proactive on the GE issue in order to maximise the benefits for the CF Community.   It is vital we have an environment conducive to GE research in New Zealand and that we don't accept the closure of any avenue to continue the progress in this field.

Denis Currie, Board Chairman of the Cystic Fibrosis Association of NZ confirmed the position adopted by the Association of being a pro-GE organisation.  He stated that the work the Lobby Group was undertaking was in line with the Association's policy and therefore that Group is to be recognised as the official representative of the CFANZ on the GE issue.

Here is Nicky Churton's speech to the conference on this issue:

Everyone in this room feels passionate about Cystic Fibrosis and has thought about finding further treatments. Denis Curie has said "We must always strive to improve and do better.  We must remain positive, with a vision for the future."

We believe that vision for the future has on its horizon treatments through genetic engineering. To this end we formed a lobby group to champion this cause and work vigorously against the anti-GE propaganda.

Our Mission Statement's aim is very simple:  To Cure Cystic Fibrosis. I can't cure CF but we can create an environment in NZ conducive to medical GE research, by

• counteracting negative publicity
• lobbying political parties to make them aware of the issues and get support
• and making submissions on appropriate legislation

We want an environment conducive to research and we certainly can't agree to the Moratorium being extended for 5 years when there is no evidence to support doing so.  Who knows what treatments and advances may become available in that time and it is asking too high a price to bet my son's life on extending a ban on GE for so long.

We were forced therefore to question the appropriateness of our Patron, Susan Devoy, who joined an anti-GE lobby group, the Sustainability Council who wish to extend the Moratorium. That group used our Association's name on their website to give themselves credibility.  They had not sought our approval to do that and is something many of us felt was extremely offensive.

If our name is to be politicised then we have the right to choose which side of the Debate we support and that can only be pro-GE.

We believe any Patron that represents us should share our aims and at the very least not work against us. Dame Susan had a very obvious conflict of interest in being involved in both organisations and she chose to resign as Patron.

We make no apologies for asking searching questions of those who represent us.  Indeed we believe it is our duty to people with Cystic Fibrosis that we do so.

Anti-GE groups can come up with no evidence to support their wild claims and resort to scaremongering to create public fear and mistrust.   Something that reflects badly on all research.
 
In January this year a group called Madge (Mothers Against Genetic Engineering) announced their intention to take AgResearch to Court to stop them doing genetic research.  Whereas we want an environment conducive to research.  We therefore wrote to Madge informing them of our opposition to their actions and the newsmedia chose to publicise this.

AgResearch is working to create transgenic cows that will produce an array of therapeutic proteins in their milk.  Research that will develop knowledge and continue the progress.

In a Madge newsletter they stated "we don't know much about GE but we instinctively know its wrong".  And that is what they base their opposition to this technology on. They have had marches up and down Queen Street with cheerleaders chanting "girls say no to GMOs".

Meanwhile in hospitals around the country we have people with CF and their caregivers dealing with serious issues.  Some may have just grown pseudomonas or cepacia and some of them are considering or undergoing lung transplants.

Madge has been raising money to fight their Court case over an application that has already been thoroughly examined.  ERMA considered hundreds of submissions and examined all the expert advice and decided to approve the application.

I can't help but think that money they have raised would be much better spent improving the quality of life for people with genetic diseases while they wait for a cure - rather than trying to stop one.

As a consequence of standing up on this issue we received a great deal of correspondence. I received a letter from GEFreeNZ who urged me to forsake medical research and claimed there were many alternative therapies and treatments available for CF.

I also received a letter from Mannatech Associates who stated to me they could cure CF and that they were undertaking an eradication programme for CF in 2003. Their products will not cure Cystic Fibrosis.

These groups makes claims they fail to back up with case studies and scientific evidence. We therefore supported Sally Carron from the Auckland CF community in her stance on Mannatech and I was lucky enough to get a story published in the NZ Womens Weekly in April.

Our National Association has adopted a pro-GE stance and I would like to commend them for clarifying that. We have had a great deal of support from people throughout the country and I wish to state that this lobby group is not limited to Canterbury but we have had great input from many others and we rely on and appreciate this.

Our group is merely carrying on the lobbying already being undertaken within our community and I know I was very grateful for the submission and witness brief that was presented to the Royal Commission on our behalf.

I wish to acknowledge also the great support we have had from the Life Sciences Network and indeed Dr William Rolleston, Chairman of that organisation spoke to us yesterday to further our knowledge on the issues involved. They have put our media releases on their website and let us get our message out throughout New Zealand. 

We have had a great deal of criticism from the anti-GE groups and they have written about us in their newsletters and media releases.  Great praise indeed.  They know we exist - we are very much a pro-GE lobby group.  This is where we should be.

Having an environment in NZ conducive to research will keep as many options open for our CF people as possible.  Options give empowerment.

We intend to be proactive on this issue and not accept the closure of any avenue for the advancement of genetic research.