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Campaign for Access to therapies for our diseases

November 2011 - Pompe patients march on Parliament.

• On Wednesday 16 November 2011, NZ Pompe patients will gather at Civic Square in Wellington at 12 noon to march (or roll in their wheelchairs) to Parliament to meet political party representatives. We will hear from them what their policies are about treating those with life-threatening diseases, and what they intend to do about setting up an orphan drugs policy for all rare diseases. You are welcome to join us. Remember, any family at any time can be affected by a disease like this.
• Here is our latest press release about this march
• Here are the political party commitments on Myozyme and orphan drugs (pdf file).

18th October 2011

• Delegation of three Pompe patients supported by LDNZ, NZORD and MDA along with treated US patient Monique Griffin take the campaign to the Beehive with a direct request to the Prime Minister John Key to take charge of the issue and resolve it. Read our notes on our request to the Prime Minister asking him to honour the National Party's 2008 election pledge.
• The Prime Minister's Office refused to meet with us and we were turned away by security.
• Here are some media links relating to this event.
• • Radio New Zealand - Unsuccessful bid to Lobby PM over Rare drug.
  • Campaign for an orphan diseases policy goes to the Beehive
  • Laurie Hill - Dying man turned away from John Key's Door
  • Rare Disease Delegation turned away from Beehive
  • Government breaks promise to rare disease suffers The governments refusal to explain why it has not delivered on a promise to ensure access to life-saving drugs for Kiwis suffering from rare diseases is cowardly and disrespectful Labour's Health spokesperson Grant Robertson says.
  • http://www.radionz.co.nz/national/programmes/checkpoint/audio/2500470/patients-ask-government-to-fund-expensive-life-saving-drug.asx Unfortunately this one mentioned $2Million per patient, when it should have been $2Million as an estimate to treat all.
  • "The Panel" on Radion NZ afternoons with Jim Mora, featuring Laurie Hill discussing his situation. The interview starts about 11 minutes into the recording.http://www.radionz.co.nz/national/programmes/afternoons/audio/2500594/the-panel-with-mike-williams-and-jonathan-krebs-part-2.asx
    
  • Daily News: Behind a penguin on Priority List.
    

30th September 2011

• Pharmac declines three more applications for Myozyme under Exceptional Circumstances.
  

August 2011

• NZORD publishes an analysis of Pharmac's new Exceptional Circumstances policy.
• This clarifies how Pharmac has failed to resolve the issue of access to specialised medicines. Follow this link to the article to the NZORD website.
  

9th September 2011

• Pharmac agree to consider appeal over decision to decline Myozyme. Read our Press Release
  

27th June 2011

• Pharmac issued their new exceptional circumstances scheme and admit in a briefing to groups they "have not solved the problem" relating to specialised medicines for rare disorders.
  

22nd June 2011

• We submitted an appeal to Pharmac over their decision to decline one of our patients. Follow this link to read the appeal.
  

16th June 2011

• John Forman and Chris Higgins MDANZ breifed health Minister Tony Ryall on the issues.
• We emphasied that Pharmac's Exceptional Circumstances review will not solve the problem that he asked them to address about access to Highly Specialised Medicines.
  

7th June 2011

• We called our families into action again asking them to call their local radio station, writing to their local National MP or their local papers, and on 7th June 2011 our Public and Media campaign began. Here is a link to our call to action. This campaign is not over yet, keep checking back for further information as we develop the next stage of our campaign.
• Here are the media links to the interviews that took place.
• • Radio Interview - 7th June 2011, People with rare genetically inherited disorders are demanding a better deal from the drug-buying agency Pharmac. 
  • Dominion Post - 8th June 2011, Drugs for rare diseases may not be funded
  • Close up TV One - 8th June 2011, interview with Kirsty Peacock and Allyson Lock
  • Pharmac drug ruling "a death sentence" - Taranaki Daily News interview with Laurie Hill
  • TV One Breakfast interview with John Forman
  • Manukau Courier 19th September 2011 interview with Freda Evans - Her battle to get drug funded
  • Wairarapa Times - 15th September 2011 Double blow as rare disease strikes twins.  Allyson's twin brother diagnosed with Pompe disease.