Current news - National & International
Here we will keep you updated with current news articles of interest.
If you have anything you would like published please email it to us.
If you have anything you would like published please email it to us.
Personal Media Articles and TV News
Frankly speaking...
I, for one, am really enjoying this blog from Frank! He absolutely gets what this is about! I hope John Key reads this and is totally disgusted in his treatment of us with Pompe disease in New Zealand. He should be ashamed of himself! Do you think if any of John Key's family were diagnosed with Pompe disease that he would want the same treatment for them that he has dished out to us? ~ Allyson
The Panel on Jim Mora's Afternoon radio program on Radio NZ ~ Laurie
21 Oct, 2011
This is a particularly annoying response from a bioethics professor who clearly is not up with the play on the treatment of Pompe. It would appear in fact that he was well briefed by Pharmac. The relevant part starts at 16.50 from the start.
Behind a penguin on priority list ~ Laurie
21 Oct, 2011
If we can go so far out of our way to save one sea bird, then surely our people deserve better than this.
Patients ask Government to Fund ERT ~ Freda
19 Oct, 2011
Radio interview with Freda, Monique Griffin and John Forman
“The Panel” on Radio NZ ~ Laurie
19 Oct, 2011
Laurie’s interview starts about 11 minutes into the recording.
Government breaks promise to rare disease sufferers
18 Oct, 2011
The Government’s 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.
Rare disease delegation left out in cold ~ Dean
19 Oct, 2011
An Invercargill equipment repairman with a rare neuromuscular disease was one of five people turned away from the Beehive yesterday, after seeking an intervention from John Key to get access to the drug Myozyme, which could halt the progression of the fatal disease.
Dying man turned away at Parliament ~ Laurie
19 Oct, 2011
A New Plymouth man fighting for his life headed to Wellington to appeal to John Key for help, only to be turned away by the prime minister's security guards.
Campaign for an orphan diseases policy goes to the Beehive
18 Oct, 2011
Rare disease groups take campaign for an orphan diseases policy to the Beehive
Unsuccessful bid to lobby over rare drug
18 Oct, 2011
Patients with a rare degenerative disease tried unsuccessfully to plead for special funding from the Prime Minister on Tuesday.
Radio interview with Steve ~ Allyson's husband
Sep 16, 2011
Classic Hits Wairarapa - Click on the play button below to hear the interview
Battle to get drug funded ~ Freda
Sep 16, 2011
Freda Evans battles every day with basic tasks like eating, breathing and walking, but is finding Pharmac the toughest opponent in her search for "a better quality of life".
Double blow as rare disease strikes twins ~ Allyson & Bruce
Sep 15, 2011
A Masterton woman suffering from a rare incurable disease is hoping for a drug funding u-turn after learning her twin brother has the same condition.
A Masterton woman suffering from a rare incurable disease is hoping for a drug funding u-turn after learning her twin brother has the same condition.
Sad Farewell ~ Allyson
Sep 13, 2011
Wairarapa Midweek Newspaper
| sadfarewell.jpg |
Hoping for help in the U.S. ~ Allyson
Sep 8, 2011
Patients are going to America in search of a drug to cure their fatal condition.
TV ONE: Close Up
TV ONE: Close Up
Graeme stepping into "foster-Mum" role ~ Allyson
Aug 8, 2011
Allyson's father-in-law steps in to help.
Serious fun day for stricken Allyson ~ Allyson
Aug 2, 2011
It was a fun day, but with a serious aim - to raise funds for medical treatment for Masterton miniature horse breeder Allyson Lock, who suffers from a rare form of muscular dystrophy.
Pharmac drug ruling 'a death sentence' ~ Laurie
Jun 18, 2011
Laurie Hill can't afford to live.
The 49-year-old New Plymouth man has a rare medical condition and without an expensive treatment – which Pharmac says will cost almost $1 million a year and may not even work – he believes he is being sentenced to an early death.
The 49-year-old New Plymouth man has a rare medical condition and without an expensive treatment – which Pharmac says will cost almost $1 million a year and may not even work – he believes he is being sentenced to an early death.
Radio New Zealand: National: Checkpoint
Jun 7, 2011
People with rare, genetically inherited disorders are demanding a better deal from the drug-buying agency Pharmac.
Dominion Post ~ Dean
Jun 7, 2011
Drugs For Rare Diseases May Not Be Funded
TV ONE: Breakfast program ~ John Forman
Jun 8, 2011
I thought this was a very poor interview on Petra Bagust's part!
TV ONE: Close Up ~ Allyson
Jun 7, 2011
Fighting PHARMAC for special drug
Radio New Zealand: National: NINE TO NOON ~ Allyson
Jun 7, 2011
Pharmac Medical Director Dr Peter Moodie, Executive Director of NZ Organisation for Rare Disorders John Forman and Pompe Disease sufferer Allyson Lock all join the programme to discuss the funding agency's decisions and decision making processes.
Denim Day for Rare Diseases
Feb 28, 2011
Masterton Medical, Medlab and The Chemists showed their support for Rare Disease Day
Feb 28, 2011
Masterton Medical, Medlab and The Chemists showed their support for Rare Disease Day
Allyson's story for Rare Disease Day - "Wairarapa Midweek" article
Feb 22, 2011
Feb 22, 2011
Review may widen drug treatment options ~ Laurie
Jan 13, 2011
New Zealand News
"Un-Doctored" - Un-edited statements from the health sector and beyond
"Have your voice heard, help us help you"
If you get the opportunity, please go along to one of these meetings and "HAVE YOUR VOICE HEARD"!
Media release from Pharmac
Sep 15, 2011
In anticipation of PHARMAC's Forum 2012, we are holding a series of Regional Forums throughout the country in September and October 2011. The Regional Forums are being co-hosted by PHARMAC and members of our Consumer Advisory Committee (CAC). The feedback we get will be used to inform the programme for the national Forum planned for February 2012 in Wellington.
If you get the opportunity, please go along to one of these meetings and "HAVE YOUR VOICE HEARD"!
Media release from Pharmac
Sep 15, 2011
In anticipation of PHARMAC's Forum 2012, we are holding a series of Regional Forums throughout the country in September and October 2011. The Regional Forums are being co-hosted by PHARMAC and members of our Consumer Advisory Committee (CAC). The feedback we get will be used to inform the programme for the national Forum planned for February 2012 in Wellington.
"Un-Doctored" - Un-edited statements from the health sector and beyond
Media Release from New Zealand Organisation for Rare Disorders (NZORD)
Sep 13, 2011
Three patient advocacy groups have won a concession from Pharmac who will consider at their 27 September board meeting an appeal against their earlier decision to decline funding for Myozyme, a specialised enzyme replacement therapy. Myozyme treats Pompe disease, a rare Lysosomal disease that has similar symptoms to some forms of muscular dystrophy. Without treatment Pompe disease is fatal, leading over several years to increased muscle weakness and respiratory failure.
Note: The September meeting of the Pharmac Board will be to hear the 3 applications for Myozyme from Laurie, Freda and Dean. This meeting will not be to review the decision on Allyson's decline for this treatment. We will let you know what date this will be heard when Pharmac's Board make that decision.
Sep 13, 2011
Three patient advocacy groups have won a concession from Pharmac who will consider at their 27 September board meeting an appeal against their earlier decision to decline funding for Myozyme, a specialised enzyme replacement therapy. Myozyme treats Pompe disease, a rare Lysosomal disease that has similar symptoms to some forms of muscular dystrophy. Without treatment Pompe disease is fatal, leading over several years to increased muscle weakness and respiratory failure.
Note: The September meeting of the Pharmac Board will be to hear the 3 applications for Myozyme from Laurie, Freda and Dean. This meeting will not be to review the decision on Allyson's decline for this treatment. We will let you know what date this will be heard when Pharmac's Board make that decision.
Access to Enzyme Replacement Therapy for Lysosomal Diseases
Jun 7, 2011
Pharmac: The Politics of Playing God
Jun 13, 2011
Allyson's second submission to PHARMAC
24 Mar, 2011
Pharmacology and Therapeutics Advisory Committee (PTAC)
Feb, 2011
The minutes of the PTAC meeting held on the 17th & 18th February 2011.
Of particular interest to us with Pompe is on page 11
Feb, 2011
The minutes of the PTAC meeting held on the 17th & 18th February 2011.
Of particular interest to us with Pompe is on page 11
Girl's hospital care costs nearly $1 million
Jan 10, 2011
PHARMAC’s Consultation on Exceptional Circumstances
Jan 10, 2011
Review on PHARMAC'S Exceptional Circumstances Policy
Jan 10, 2011
International News
Hurler’s Syndrome (MPS 1) and Pompe Disease Recommended by Federal Advisory Committee on May 17, 2012
May 19, 2012
The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children voted 11-0 on May 17th 2012 to add Hurler’s Syndrome (MPS 1) and Pompe Disease to the recommended list of diseases to be included in the core panel for screened diseases. Although, newborn screening programs fall under state control, many states place a high emphasis on the recommendations of the Federal Advisory Committee. California is one of those states. The recommendation of two lysosomal storage diseases (LSDs) by the Federal Advisory Committee is great news and should help facilitate the expansion of newborn screening programs to include LSDs nationwide.
NeuRx Diaphragm Pacing System Approved for ALS
Sep 29, 2011
The NeuRx Diaphragm Pacing System, a device that may forestall the need for invasive ventilation, has been approved by the FDA for ALS.
Note: One of our Pompe family has been fitted with one of these after having been on a ventilator for over 4 years. We will keep you posted as to his progress. He's doing well!
Note: One of our Pompe family has been fitted with one of these after having been on a ventilator for over 4 years. We will keep you posted as to his progress. He's doing well!
BioMarin Pharma rises as rating lifted to 'Buy'
Sep 28, 2011
BMN701 the company's "most underappreciated" catalyst for next year.
Brad Flies Out To Stay Alive
Mar 17, 2011
BRAD Gibson will leave for Florida tomorrow to take part in a new pharmaceutical trial for a medication to treat the rare genetic disease that is slowly killing him.
Brad forced to US for treatment
Feb 28, 2011
Our OZ neighbour heads to the US for Biomarin Drug Trial - Good luck Brad - see you there!
Roxon Rejects Plea On Drugs
Jun 21, 2011
Amicus Therapeutics Announces John F. Crowley Executive Chairman
Apr 11, 2011
Amicus Therapeutics Announces Transition of John F. Crowley from Chairman and Chief Executive Officer to Executive Chairman
Sanofi plans autonomy for part of Genzyme business
Mar 2, 2011
French drugmaker Sanofi-Aventis SA plans to give Genzyme Corp.'s orphan drug business, which focuses on rare diseases, some autonomy once it completes its $20.1 billion acquisition of the specialty drugmaker...
Mar 2, 2011
French drugmaker Sanofi-Aventis SA plans to give Genzyme Corp.'s orphan drug business, which focuses on rare diseases, some autonomy once it completes its $20.1 billion acquisition of the specialty drugmaker...
Genzyme Recognizes International Rare Disease Day by Launching New Patient Advocacy Grant Program
Feb 28, 2011
Feb 28, 2011
