Gordon Campbell | Parliament TV | Parliament Today | News Video | Crime | Employers | Housing | Immigration | Legal | Local Govt. | Maori | Welfare | Unions | Youth | Search

 

Rare Disease Mum Abandoned by her local MP

Lysosomal Diseases New Zealand

Rare Disease Mum Abandoned by her local MP.

For Samantha Lenik’s potential life-changing Petition to make it to Parliament, Samantha needs an MP to personally present the Petition to the House of Representatives. Unfortunately, Samantha’s local MP Mark Mitchell (National MP for Rodney) declined to receive the Petition, and with one week to go she is scrambling to find an MP who is willing to help her and other rare disease patients.

Samantha, along with other rare disease groups, plans to present the Petition to Parliament on Tuesday 15 November. The Petitions aim is to ensure Pharmac have enough funding to implement its new policy on medicines for rare diseases, which was announced back in April 2014, and to give urgency to doing so.

Samantha says she is aware that MPs are not obliged to receive a Petition, presumably to avoid situations where they are faced with topics they personally cannot agree with. “But how could Mark Mitchell possibly have any resistance to my petition asking for a fair go for patients with very rare diseases, who have been seriously neglected over access to medicines,” asks Samantha. She is now waiting on a request to Maurice Williamson that he fill the void to receive her petition and present it to parliament.

Samantha is affected by Pompe disease, a rare Lysosomal disease that affects just ten other New Zealanders. It is a fatal disease which leads to progressive muscle weakness, wheelchair dependence and breathing assistance, and ultimately less time with their families. This frightening outlook can be prevented with treatment. An enzyme replacement therapy called Myozyme can stabilise the disease and prevent deterioration. This treatment was first approved ten years ago by the FDA, the US medicine regulator, and is funded for patients in 76 countries around the world, but not in New Zealand.

Samantha asks all who support them to sign the petition on change.org which can also be accessed via the home page of Lysosomal Diseases New Zealand www.ldnz.org.nz

The formal paper petition is also gathering signatures, and Samantha will hand this to a sponsoring MP on Tuesday 15th November.

“We need to get treated so we can get on with living our lives,” she says. “We want no patient left behind – no family forgotten.”


© Scoop Media

 
 
 
Parliament Headlines | Politics Headlines | Regional Headlines

Pay Equity: Historic Settlement For Education Support Workers

The New Zealand Educational Institute (NZEI) and the Ministry of Education today signed Terms of Settlement to address a pay equity claim for 329 support workers who work with very young children in early childhood and primary schools.

“Almost all education support workers are women, and they do vital work helping young children with severe learning and behavioural challenges to learn. I am delighted to say they will finally be paid fairly for the crucial work they do,” Prime Minister Jacinda Ardern said. More>>

 

Gordon Campbell: On The Stereotypes About Jacinda Ardern

Routinely, female politicians get depicted as either show ponies or battle axes, with little room for anything else in between. .. More>>

Weekend Interviews: "Discriminatory And Racist" Aussie Deportations

The former president of Australia’s Human Rights Commission Gillian Triggs says deportations have risen dramatically in Australia since 2014 when ministers and ministerial delegates were given the power to cancel visas - and half of those being deported are New Zealanders. "These are massive numbers, actually escalating dramatically."... More>>

ALSO:

Legal Challenge: Prisoner Has 9 Boxes Of Documents Seized

Human rights organisation People Against Prisons Aotearoa says a prisoner they advocate for has had 9 boxes of legal documents seized from him just days before his case against the Department of Corrections was to be heard. More>>

Single-Use Plastic Bags: Govt To Phase Them Out

Single-use plastic shopping bags will be phased out over the next year, Prime Minister Jacinda Ardern and Associate Environment Minister Eugenie Sage announced today. More>>

ALSO:

Lesser Politicians: ACT Conference Promises Fewer Politicians

Party Leader David Seymour today revealed his Smaller Government Bill which will reduce the size of Parliament to 100 MPs, limit the size of the Executive to 20 Ministers, and remove the Maori seats. More>>

ALSO:

Gender Changes: Suggested Change To Birth, Deaths And Marriages Act Welcomed

The current process to change the sex ‘marker’ on a birth certificate is lengthy, expensive and requires medical evidence as well as the involvement of the Family Court... More>>

ALSO:

Major Health Review: Terms Of Reference Finalised

Health Minister Dr David Clark has confirmed the final details of the wide-ranging review of New Zealand’s health and disability system as it begins its work in earnest. More>>

ALSO:

Gordon Campbell: On The EU’s Battle With Washington Over Iran (In Wellington)

Luckily, at least the European Union is standing up to the Washington bully – and the EU chose a press conference in Wellington this week to make its defence of the international rules-based system perfectly clear. More>>

ALSO:

Mental Health: New 6-Bed Unit For Wellington Region

The Mental Health Foundation is supportive of the news of a new, national mental health unit, but is more encouraged by the Minister’s comments that suggest more mental health initiatives will follow the Mental Health Inquiry. More>>

ALSO:

 
 
 
 
 

LATEST HEADLINES

  • PARLIAMENT
  • POLITICS
  • REGIONAL
 
 

Featured InfoPages