New Zealand MS News

DREAMS Launch
The MS Society's DREAMS programme (Delightful Recreation and Enjoyable Activities for People with MS) was launched on Thursday April 10 at a reception in Auckland attended by approximately 100 people.

DREAMS activities are requested by Society members, and are designed to overcome barriers posed by MS. Recently, groups of people with MS journeyed by rail into the rainforest, and wheel-chaired and walked along the beach.

DREAMS are made possible by donations from the community, sponsorships and fundraising events.

Guest speaker at the DREAMS launch was Tab Baldwin, coach of the fabulous Tall Blacks, who referred to the dreams that propelled his team during the 2002 basketball world cup in Indiana, and who encouraged everyone to help make dreams come true for people with MS.

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May 17, 2002
Young face of MS provides inspiration

By ANNABEL SCAIFE, Photo JEFF EVANS

Few people know more than Sally Shaw that the chances of getting Multiple Sclerosis (MS) are higher if you are young and female.

The Auckland MS Society is promoting the sobering message in an attempt to destroy perceptions that the condition affects only older people.

Figures show the onset of MS is most likely between 25 and 35 years. Women are affected two to three times more often than men.

MS Auckland director Nadine Plet organised Australian student Sally Shaw, fitting the "most likely" category, to visit Auckland showing MS doesn't necessarily have to be a debilitating disease.

"Sally gives an inspirational view. We want to emphasise you can still have a lifestyle if you get MS. People diagnosed with it often shut themselves away, but Sally shows people you can continue to be successful," says Ms Plet.

"Her talk might encourage people who haven't told family and friends about their diagnosis to do so."

The 25-year-old spoke to a packed house at the Royal NZ Yacht Squadron on Wednesday night.

She was diagnosed with the illness eight months ago after feeling a numb sensation in her leg. Ms Plet says it is very rare for the condition to be picked up at such an early stage.

"Sally was diagnosed within three weeks which is unheard of. It usually takes between six and ten years for diagnosis."

Ms Shaw was able to give her experience from both a personal and scientific point of view because she is studying a clinical psychology thesis on the subject.

Her speech touched the audience, members of which took the opportunity to share their experiences and ask questions. One woman said she had waited 20 years to be given an accurate diagnosis of MS.

Reproduced with permission, Central Leader

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Mar 7, 2002
Beta interferon funding cap removed

Health Minister Annette King has welcomed Pharmac's decision to remove the funding cap on beta interferon, allowing more New Zealanders with multiple sclerosis access to the treatment.

The decision will initially see a further 50 patients given subsidised beta interferon, with the prospect of more following if they meet the criteria for accessing the drug.

Beta interferon is currently subsidised for 180 patients under a funding cap, with further patients meeting the entry criteria put on a waiting list. Pharmac says the funding cap has now been removed and fully subsidised beta interferon made available without delay to all patients who meet the entry criteria published in the Pharmaceutical Schedule.

Ms King said multiple sclerosis was a terrible disease, for which there was no cure and only limited treatment options.

"Beta interferon has been shown to provide benefits to some MS patients so it is pleasing that Pharmac is able to make this change and offer the drug to more patients."

Pharmac chief executive Wayne McNee said the decision followed a recommendation from the expert committee that was set up to consider the subsidised access to the beta interferon waiting list. All patients who meet the entry criteria will now have immediate subsidised access to beta interferon.

People with multiple sclerosis are given access to subsidised beta interferon according to a set of entry and exit criteria developed by expert neurologists.

"Beta interferon is a costly drug and one that continues to be the subject of international scrutiny, so we have to ensure that it is targeted at people who will benefit from it."

Mr McNee said that when a specialist committee such as MSTAC (Multiple Sclerosis Treatment Advisory Committee) made a recommendation, it did so considering only clinical issues for the condition it was looking at. Wider health sector issues were then considered by Pharmac before any recommendation could be implemented.
The removal of the cap for beta interferon has been made possible through savings in other areas of the pharmaceutical budget. The change is expected to cost up to an additional $3 million a year.

Letter from Pharmac announcing the lifting of the funding cap on beta interferon and review of qualifying criteria

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Feb 14, 2002
Worldwide ride for MS

By ANNABEL SCAIFE

Three French cyclists have spent six months, 11,000 kilometres and plenty of sweat campaigning for multiple sclerosis.

Teacher Joel Crose, 28, student Philipe Nicolas, 26, and lawyer Christophe Caudrillier, 29, are cycling the five continents to meet sufferers of the condition and their advocates.

The trio's arrival in Auckland last week marked their halfway point. By journey's end, they will have pedalled 22,000km.

The made a six-day ride from Auckland to Wellington, with nightly stopovers in friendly farmers' backyards and at motorcamps.

Their quest began when a close friend was diagnosed with MS.

The three pals decided they would do something significant and spent four years organising their expedition with the French multiple sclerosis society, Odyssee de l'Espoir.

The aims of the journey are to link MS organisations and sufferers worldwide, get information out to the public, and help patients fight the loneliness of MS.

The friends say they feel lucky to be making the trip because they are meeting "incredible MS people".

When asked if they ever feel homesick, Philipe says "no, because this is our dream".

Left-right: Philipe Nicolas, Joel Crose and Christophe Caudrillier.
Western Leader Photo: Jason Oxenham

France has 60,000 people with MS but information about the disease is scarce, Joel says.

"The French MS organisation in 10 years behind Australia, and what we have seen in New Zealand so far," he says.

They say India is the least organised of the 14 countries they have visited; a result of widespread poverty. There are few MS activists and patients cannot afford to take pain medication.

Christophe says Indian sufferers spend a lot of time doing yoga and meditating. "It was amazing to see it work so well," he says.

In New Zealand, 4000 people have multiple sclerosis, with 600 sufferers in central Auckland.

The director of MS Auckland, Nadine Plet, says this is a conservative estimate. Many people won't join the society because they don't want anyone to find out about their condition.

Ms Plet says the cyclists are amazing to give up everything for MS.

"We talk about young people not caring, but they show so much caring. It give hope for the future."

The men flew to Chile today.

Reproduced with permission, the Western Leader

More information: www.odyssee-espoir.com

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Jan 30, 2002
Booking in a good read

By AMY PATTERSON

A new machine is giving disabled residents at an Epsom care unit the ability to read by themselves.

The telephone book size page-turner arrived at Elizabeth Knox Home and Hospital from the United States at the end of last year - three months after it was due to arrive.

The Multiple Sclerosis Society planned to present it to the home during their awareness week, on September 17.

But the page-turner was held up in Los Angeles while the US tightened airport security in the wake of terrorist attacks on September 11.

About six residents at the home read regularly with the help of nurses to turn their books' pages.

Nurse Charlene Parker says it is important for people to do things for themselves.

"Most have a little bit of hand-eye coordination," Ms Parker says.

"They had to wait for a nurse to come and turn it and sometimes that would take quite long and they lose interest," says Ms Parker.

Resident Sharon Parker has multiple sclerosis and says it is difficult to read.

"I used to be [a reader] but I just can't do it now."

A page-turning machine has given Elizabeth Knox Home and Hospital residents, such as Carol Bognar, the ability to read without assistance. Central Leader Photo: Caitlin May

The page-turner can hold magazines, and all sizes of books. It has a joystick that operates tihe direction and amount of pages it turns.

There are about 25 of the Swedish made machines in the country. Because they each cost about $4000, societies often fund their import.

Reproduced with permission, the Central Leader

The MS Society of Auckland would like to thank Sky City Community Trust which provided a grant to buy two page turners.

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25.05.01 - News release from ERMA

The Environmental Risk Management Authority (ERMA) has further considered the application from Ag Research to field test genetically modified cattle.

In a decision released today, the application has been approved with controls.

The High Court recently upheld an appeal on the field test - first approved in July 2000- on points of law. It set aside the original approval and instructed the Authority to reconsider the field test application with closer application of the 'Methodology' - a decision-making guide set down in regulations to the Hazardous Substances and New Organisms (HSNO) Act 1996.

The application involved inserting a synthetic human gene, which codes for the myelin basic protein, in dairy cattle. The aim of the research was to investigate the expression of the protein in the cows' milk. The transgenic cattle were to be kept in a contained trial area, under specified management controls, at Ag Research's Ruakura premises.

A special committee of the Authority has spent the last two weeks further considering the application. It has concluded that the benefits of the application outweigh the risks and costs- subject to it being managed under strict containment conditions. The application has therefore been approved with controls.

The decision was by a majority of the committee members, with one member taking a minority view. The key point of difference was in the significance given to the concerns of Ngati Wairere, the hapu with 'manuwhenua' status in the local area.

ERMA New Zealand Chief Executive Dr Bas Walker said that the special committee was mindful of the judgement of the Court in carrying out its consideration.

"The Committee has been very careful to apply the provisions of the Methodology in its decision on this containment application. It also is important to remember that this is a field test and not a general release of a GMO into the environment."

The approval for the field test, which has been made under the procedures set down in the Act, comes into effect immediately.

Background information

The Environmental Risk Management Authority (ERMA) was established under the Hazardous Substances and New Organisms (HSNO) Act 1996.

It is an independent panel of experts, appointed by the Minister for the Environment. ERMA is a semi judicial body, whose main function is to regulate the introduction of new plants and animals, including genetically modified organisms, and of hazardous substances to New Zealand.

The original application from AgResearch Ltd was to field test a genetically modified organism in containment. It was first made on 11 December 1998 and, following additional information requests from ERMA New Zealand, it was publicly notified on 17 March 1999.

The applicant sought approval to produce and field test genetically modified cattle at its research facility at Ruakua. The application was to use the cattle for research purposes, not for release into the wider environment.

It was a three-part proposal, involving modifications to dairy cattle to:

1) insert additional casein protein genes
2) inactivate the b-lactoglobulin milk protein
3) insert a sequence that coded for human myelin basic protein (MBP), so that MBP would be expressed in the milk of GM cattle.

A public hearing was held on 25 August 1999. Parts 1 and 2 were approved in November 1999, but the committee adjourned its consideration while further information was sought on part 3, including consultation between the applicant and local hapu, Ngati Wairere. Part 3 was approved in July 2000.

The research involves the development of cattle from embryos containing a gene sequence that codes for a human protein, the myelin basic protein (MBP). Cows containing this construct are expected to produce the human MBP in their milk. The gene construct is a copy of a human gene sequence. The copy was made from human DNA in an international gene bank. The development of the GM embryos was approved earlier by AgResearch's Institutional Biological Safety Committee (IBSC) under delegated authority from ERMA.

Under section 45 of the HSNO Act, the Authority may approve a GMO field test if it is for one of the purposes stated and if, after taking into account all the effects of the organism, the beneficial effects of having it in containment outweigh the adverse effects if it should escape; and it is satisfied the organism can be adequately contained.

In approving the field test in July 2000, the Authority imposed a range of containment controls.

It required that the total number of cattle in the containment facility (for all three parts of the research programme), including GM and conventional cattle, would not exceed 200. The actual number of GM cows present in the facility at any one time, up to the 200 limit, was an operational matter for Ag Research.

On 24 May 2001, Ag Research said that the process so far has included:

• 51 embryos transferred to 51 cows
• 45 failed pregnancies
• 6 cows remaining pregnant with 6 unborn calves.

It is understood that the cows are due to give birth in June.

The Authority's decision, as it related to part 3 of the research involving human genes, was appealed by a group of submitters in August 2000.

The appeal was upheld by the High Court on 2 May 2001. The original approval was set aside and the Authority was instructed to reconsider the application. Subsequently the Court granted a stay until 28 May 2001 which effectively re instated the original approval while the further consideration occurred, to maintain the legal containment status of the animals under the Act.

The special committee of the Authority, which reconsidered the application, comprised:

• Dr Oliver Sutherland, Chairman
• Mrs Helen Hughes 
• Professor Colin Mantell 
• Mrs Leatrice Welsh, an external expert on Maori tikanga 

The application has not been affected by the voluntary Moratorium on Genetic Modification. It was already inside the HSNO process before the Moratorium took effect on 14 June 2000. The Moratorium is due to finish on 31 August 2001.

The Authority has already approved other field trial research using copies of human genes, in an application in 1999 by PPL Therapeutics Ltd to develop a manufacturing flock of GM sheep.

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26.12.99

Government to fund beta-interferon

News release issued by the Minister of Health

Health Minister Annette King has directed the Health Funding Authority to instruct the board of Pharmac to fund the beta-interferon drugs for the treatment of multiple sclerosis.

Her decision brings to a successful end a long campaign by sufferers of the disease and the Multiple Sclerosis Society.

Mrs King said today: "We made this pledge during the election campaign, and it was a decision supported by the health select committee which heard compelling evidence that the previous government took little notice of.

"Multiple sclerosis is a disease with little or no treatment possible, and the Government wants to do what it can to help sufferers who can benefit from this drug treatment.

"Until this decision, New Zealand was one of only two countries in the world mean enough not to fund these drugs."

Mrs King said criteria for eligibility for beta-interferon has (sic) been developed in direct consultation with leading New Zealand neurologists who specialise in the management of multiple sclerosis.

Multiple sclerosis (MS) is a chronic disease of the nervous system that impairs the flow of messages from the brain and spinal cord to other parts of the body.

The disease goes through bouts of becoming worse or better, and while there is no cure, clinical trials have shown beta interferon drugs can help reduce the number of relapses in some patients by about 30 per cent a year, and the rate of severe attacks by about 50 per cent.

For patients whose disease has caused ongoing progression of disability (the secondary progressive form of MS), beta-interferon delays progression by about 50 per cent, meaning the drugs may prolong the time between when a person is diagnosed with MS and becomes quite disabled.

Mrs King said perhaps up to 130 New Zealanders could be helped by the new subsidy.

Some New Zealanders already paid for the drugs themselves, but their eligibility for access to the subsidy would be no higher or lower than any other patient, Mrs King said.

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