Month: January 2019

Pharmaceutical Benefits Scheme Orkambi rejection leaves cystic fibrosis patients heartbroken

Fighter: Morgan Gollan is refusing to give up on access to Orkambi. “We will band together and be as loud as we can until our voice is heard. We have been fighting our whole life so giving up is just not an option.” Picture: Marina NeilMORGAN Gollan made an impassioned promise to herlate friend Brooke, shortly before she passed away at the age of16 after a failed double lung transplant.
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Ms Gollan told her friend she would never give up fighting against cystic fibrosis.

“I’ve had 10 close friends with cystic fibrosis pass away and have heard of many more,” she said. “You can see your own mortality. You take on their fight as well and speak up for them, so losing them is not in vain.”

Ms Gollan, 25, also lives with the life-shortening chronic condition, whichaffects the lungs and digestive system.

She will be among a group that will march onCanberra when Parliament returns in February, to ask the government to support their right to access Vertex’s “life changing” new drug, Orkambi.

The drug is available to eligible people in the United States, Austria, Germany and France and targets thecause of cystic fibrosis, not just the symptoms, and has been shown in clinical trials toimprovelung function and reducehospitalisationand antibiotic use.

Ms Gollan saidOrkambi hadthe potential to change 1000 n lives, but costs about US $260,000 without subsidy each year.

The government-appointedPharmaceutical Benefits Advisory Committee has recognised the drug’s “potential clinical value” but announced this month it would notrecommend it for listing on the Pharmaceutical Benefits Scheme “on the basis of unfavourable and uncertain cost effectiveness at the requested price”.

“The PBAC noted that the resubmission did not address the issues previously identified in its consideration of the [first] March 2016 submission,” a government spokesperson said.

“The PBAC particularly noted the continuing uncertainty regarding long-term benefits of treatment on lung function and overall survival.

“The PBAC noted that the estimated net cost…to government was more than $100 million in each of the first five years of listing.”

Vertex said “government timelines” prevented reconsideration before July 2017, “meaning that n patient access is now unlikely until the second half of 2017 or 2018”.

Minister for Health Sussan Ley said she was looking to international collaboration to address the “unsustainable and unaffordable”price being demanded.

Ms Gollan – whoreceivescompassionate access to the drug and has seen her lung capacity grow from 35 per cent to a high of 50 per cent –said people with CF spent their lives wishing for a cure.

“Right now there’s a revolutionary treatment that works but isn’t available due to cost. That’s worse than having no treatments available at all –it’s heartbreaking.”

Rebecca Northam, 20, said her lung capacity had risen from below 40 per cent to a high of 58 per cent since she started taking Orkambi.

Her number of hospital admissions has halved in the past year andshe is attending most of her university lectures, picking up more shifts at her workplace and has started going to the gym.

“So many different aspects of my life are better,” she said.

“It’s scary to think where I would be if I did not have access to it –but there’s so many people in that position.

“It should not be this hard and people should not have fight this much.”

Ms Northam has started a petition that already has more than 37,000 signatures, asking Vertex and the government to work together to make the drug available on the PBS.

Cystic Fibrosis CEO Nettie Burke said patients should “not be caught in the financial crossfire between the government and Vertex”.

“It is time to ask our elected representative in Canberra to support our urgent need for these transformational medicines and call for a debate in Parliament focusing on social and health equity in ,”she said.

“Cystic Fibrosis will be asking why people born with CF, through no fault of their own, are not being supported and given access to life saving drugs. Their disease is not the result of poor lifestyle choices and they have not endangered their health through any precarious behaviour.”

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Newcastle remembers fateful 1989 earthquake

Looking back: George Di Berardino and Raffaele Pignetti, outside the Kent Hotel, said they were lucky they weren’t on Beaumont Street when the earthquake measuring 5.6 on the Richter scale struck. Picture: Simone De PeakNewcastle earthquake impossible to forget
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LIFELONG friends George Di Berardino and Raffaele Pignetti have been meeting regularly for coffee on Beaumont Street for six decades.

But a series of seemingly small decisions on December 28, 1989, meant they were not on the street at 10.27am when theearthquake struck and shookthe awnings that collapsed and killed three.

“Sometimes the littlest things can change your life,” Mr Pignetti said.

The 27thanniversary of one of the most serious natural events in n history passed largely unnoticed on Beaumont Street, which along with Newcastle Workers Club bore the brunt of the destruction.

Reflecting on a fateful day | photos Hamilton community rallies to help vicitims of earthquake and to clear debris in search of more trapped persons. Picture: Supplied

Hamilton community rallies to help victims of earthquake and to clear debris in search of more trapped persons

Kathryn Gray outside her wrecked home at 44 Laman St Newcastle Earthquake

Newcastle residents in a demolished home following the 1989 earthquake

Newcastle 1989 earthquake 25-year anniversary. Former NBN cameraman Stewart Osland films the event on the corner of King and Union streets, Newcastle west.

Newcastle Workers Club demolition Steven Bennett 13 of Blackalls Park and Martin Blaxell 9 of Lapston, Blue Mountains. Picture: Anita Jones

Newcastle earthquake victim being taken into the Mater Hospital by Ambulance and hospital staff 28-12-1989 photo by Anita Jones

Gaye Windsor says her bit at the meeting at West Leagues Club to Ross Hemsworth, manager of Health & Building Surveillance.

Otto, Lindsay demolished shop Newcastle Earthquake

Blood donors at police boys club broadmeadow Bruce Garnham of Marylands.

Woman stacking bricks to be used in reconstruction Pam Goldman 41 Stevenson Place 2-1-1990

Royal Newcastle Hospital staff being briefed by Dr 28-12-1989. Credit- Newcastle Museum

Bob Hawke talks to the press Newcastle earthquake disaster aftermarth 28-12-89 Bob Hawke Talks To The Press 28-12-89

Newcastle earthquake victim being transported by ambulance to the Mater Hospittal Photo by Ken Robson 28-12-1989

devastated newcastle buildings Newcastle Earthquake Laman Street 28-12-1989 Museum

Hamilton community rallies to help victims of earthquake and to clear debris in search of more trapped persons

Mrs Kay Brown outside the ncle ambulance station in Hamilton. She was inside when the earthquake hit and collapsed the walls next to her

Woman stacking bricks to be used in reconstruction. Pam Goldman, 41 Stevenson Place

Earthquake repairs. Paul Williams and Andrew Gilkinson of Project Technology installing porting for grout injection on the face of the Newcastle Court House

War memorial and Junction Motor Lodge damaged by quake.

he chief of the Geophysics Division at the n Seismolegicial Centre in Canberra, Dr David Denham, with the seismologicial chart of the earthquake

George Hotel in Newcastle just after the earthquake on the day of its demolition as a result of earthquake damage

Earthquake damage to road, Bridge St, Waratah.

Police rescue squad from Marrickville get their first break from earthquake duty at Ncle Workers Club Newcastle Earthquake

rescue crews working to find people trapped under rubble beneath the kent hotel awning in hamilton

Mary Ironman rescued from the Newcastle Workers Club in 1989

Denny Milligan at his home in the Junction

Newcastle Workers Club.

Tech College Vice Principal Phil Warren in courtyord of Darling Building at Tighes Hill campus.

Western end Workers Club 1989

TweetFacebookHeraldspoke to on Thursday said they had not realised the significance of the date before they read the news and were divided about commemorating the event.

Mr Pignetti had driven along Beaumont Street minutes before the quake to see if any friends wereat a cafe they frequented on Cleary Street. Unable to spot any, he drove to the restaurant he and his wife operated in Charlestown Square, onlyto find the centre being evacuated.

“There were always a few fellas here, but just that morning there was no-one. I believe there should be some kind of memorial to remind you thatthese things can happen in anyone’s life and that little things have the power to change your life. If I had found a friend that morning I could have been one of the victims.”

Mr Di Berardino would meet friendsoutside the front door of The Kent every morningbefore they went for coffee. He was delayed and driving along Glebe Road when he saw people running from their houses.

“It’s nice to remind people what happened, but I think they’ve left it too late to start an official memorial service now –it would be different if they were carrying oneon.”

Julie Tipper said there should be a place to remember the quake’s dead.“It’s part of our history. We definitely need to move forward but it does not hurt to remember things that happened in our past.”

Justine Cogan said the quake made her realise mother nature’s power and mankind’s fragility. “People have different periods of grieving and ways to grieve,” she said.

“Any memorial would have to be demanded by the people most affected.”

Brian Cogan said the city “just got on with the job” after the quake and had“never done agood job of commemorating anything”.

“People that died should be remembered, but there’s no point for a memorial. People don’t give a lot of time and thought freely these days.”

READ THE CHILLINGSTORIES

Newcastle Earthquake: Alex Doyle remembers

Newcastle Earthquake: David Denham remembers

Newcastle Earthquake: Robert Matthews remembers

Newcastle Earthquake: Ian Park remembers

Newcastle Earthquake: Cath Burden remembers

Newcastle Earthquake: Camilla Askie remembers

Newcastle Earthquake: Peter Blackmore remembers

Newcastle Earthquake: Justin Collins remembers

Newcastle Earthquake: Simon Joice remembers

Newcastle Earthquake: Melissa Dial remembers

Newcastle Earthquake: Dr Leon Kleinman remembers

Newcastle Earthquake: David Rothery remembers

Newcastle Earthquake: Geoffrey Douglass remembers

Newcastle Earthquake: Jim Coughtrie remembers

Newcastle Earthquake: Alan Playford remembers

Newcastle Earthquake: The Doolans remember

Newcastle Earthquake: Debbie Abraham remembers

Newcastle Earthquake: Mark Smith remembers

Newcastle Earthquake: Bruce Hounslow & Margaret Turnbull Remember

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New Year’s Eve telecast on ABC TV: As much fun as a long, slow night in Hell

The New Year’s Eve broadcast is never short on fireworks, though it can lack a little spark. Photo: Janie Barrett The ABC’s 2016 New Year’s Eve telecast will be hosted by Ella Hooper and News 24 presenter Jeremy Fernandez. Photo: Ben Cronje
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Justine Clarke will present the earlier portion of the ABC’s 2016 New Year’s Eve telecast. Photo: ABC TV

Melbourne’s fireworks play a distinctly second fiddle. Photo: Darrian Traynor

There really are just two ways to spend New Year’s Eve. You either ignore it completely or you take the bull by the horns, make out like Dionysius and get thoroughly trashed.

The former means you’ll have nothing to remember the next day, and that’s just fine; the latter means you’ll have plenty to remember, but little chance of doing so.

The absolute worst place to be on New Year’s Eve is the middle of the road, and not just because you risk being collected by some over-the-limit BLOODY IDIOT. Treating the occasion like it matters, but not throwing yourself headlong into the fray, means just one thing. Feeling let down.

There are few things more deflating than counting down the clock to midnight on your own, or with a bunch of people who think the occasion ought to be marked with sober nodding of heads and manly handshakes. This is a time for diving into the pool with your clothes on – or better yet, with someone else’s clothes on, or no clothes on at all. Alternatively, it’s a time for going to bed at 9pm.

So let’s spare a thought for the poor bunnies whose job it is to stay (at least nominally) sober and steer the Good Ship Frivolity through the narrows that separate The Year That Was from The Year That Will Be. I’m talking about the personalities assigned to host the New Year’s Eve Spectacular (ABC, Saturday, December 31, from 8.35pm).

I’m assuming this is a gig allocated by the drawing of straws. I mean, you can’t imagine people are exactly busting to get into director of television Richard Finlayson’s office, yelling “pick me, pick me – I want to die slowly on screen, over four hours”. If there’s a more thankless task in Celebrityland, I can’t think of it. If there’s a job more set up to fail, I don’t want it.

Cast your mind back a couple of years, to the moment at the end of the broadcast when host Julia Zemiro, one of the most fleet-footed, intelligent and charming people on TV, forgot her microphone was still on and muttered “Thank God that’s over”. Millions would have agreed with her, except by then they’d already turned off.

Last year’s (non-)event was no better. Hosted by Ella Hooper and Eddie Perfect, with Play School’s Justine Clarke kicking the night off early for the littlies, the show was roundly condemned as another failure. Social media lit up with the fireworks of opprobrium; we may not have anything quite as boisterous as Hogmanay in this country, but we have at last developed our own NYE tradition – tweeting that the ABC’s coverage is so bad it makes you nostalgic for the days of Richard Wilkins.

But, really, no one can win at this game. Hosting the NYE broadcast is like being the chief spruiker for a telethon, only without the noble cause. It’s an exercise in maintaining a stupid grin for four hours, feigning wonder at the sight of millions of dollars of explosives being pointlessly detonated above a giant coathanger, then doing it all over again a couple of hours later.

This year the ABC claims it “will be hosting the biggest night of the year” with a four-hour slog – sorry, “entertainment extravaganza” – live from the Sydney Opera House forecourt. The show will be “jam-packed with some of the country’s funniest comedians”, with “brilliant musical performances and more celebrities than you can poke a sparkler at”.

Ella Hooper is back, wondering perhaps how she went from playing New Year’s Eve gigs with her band Killing Heidi to this, with Malaysian-born News 24 presenter Jeremy Fernandez striking a blow for diversity as her co-host (I’m guessing Eddie Perfect had an invitation for some root canal work that he just couldn’t decline).

Tune in if you must, but you have been warned.

Karl Quinn is on facebook at karlquinnjournalist and on twitter @karlkwin

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China’s foreign aid spending at lowest level in eight years

Foreign Minister Julie Bishop meets with locals during a visit to bring n aid to Fiji after Tropical Cyclone Winston. Photo: Alex Ellinghausen must lift its commitments on aid: World Vision’s Tim Costello Photo: Josh Robenstone
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‘s spending on foreign aid is at an eight-year low, with planned increases by 2020 still less than spending by the Rudd and Gillard governments more than a decade earlier.

Data released by the Department of Foreign Affairs and Trade this month shows ‘s $3.82 billion official development assistance budget for 2016-17 is closest to spending levels in 2009-10, totalling $3.86 billion.

Commitments over the four-year forward estimates period will peak at $4.1 billion, meaning will spend less on foreign aid in 2020 than it did in 2010-11, when the budget reached $4.3 billion.

Currently more than 90 per cent of ‘s foreign aid commitments go to countries in the Indo-Pacific region, including more than $558 million to Papua New Guinea, $365 million to Indonesia and $162 million to the Solomon Islands.

More than $180 million in spending in 2016-17 will go to Africa and the Middle East, with cross-country programs, contributions to international organisations and humanitarian and emergency assistance making up the rest of aid spending.

The 2016 federal budget saw a further $224 million in cuts from foreign aid, following the Abbott government’s slashing of $1 billion in 2015 – the largest ever single year reduction.

Planned spending in 2017-18 will grow to $3.9 billion before reaching $4.01 billion in 2018-19, the department told a Senate estimates committee.

Before coming to government in 2007, Labor committed to a target of 0.5 per cent of national income for foreign aid by 2015–16, but the plan was delayed in 2012 and 2013.

The Gillard government’s final budget statement included aid commitments of 0.37 per cent of national income.

World Vision chief advocate Tim Costello said ‘s aid spending should be a source of national embarrassment amid the country’s ongoing involvement in international military operations overseas.

Mr Costello said he was concerned Donald Trump’s rise to the US presidency and growing nationalist sentiments around the world would see further cuts to aid as the federal government works to repair the budget.

“The ill winds blowing globally are turning us inwards and they have muted what should be outrage, with ns saying ‘we’ll just look after ourselves’,” he said.

“‘s performance would see Bob Menzies turning in his grave. Aid was at its highest under Menzies, at 0.5 per cent… when per capita income was much lower.”

Praising countries including Britain, Denmark, Norway and the Netherlands for meeting the United Nations target of 0.7 per cent of national income for foreign aid, Mr Costello said the world’s poor were being ignored on ‘s doorstep.

“We’ve lost perspective. We’re still the third richest nation per capita on the earth and we’ve cut aid, which is really a measure of our sense of perspective,” he said.

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Aussies reluctant to shop around for a better mobile deal

68 per cent of people stayed with the same telco for the past three years just for the sake of it. Photo: Glenn HuntMost ns would rather stick with their current telco, whether out of loyalty or apathy, than go in search of a better deal.
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Only a third of ns have changed mobile providers in the last three years, according to figures from finder苏州夜总会招聘.au, despite both Optus and Vodafone offering ‘no-strings attached’ trial periods to entice Telstra customers after its spate of network outages. Both Vodafone and Optus have worked to improve their networks in the last few years after their own high profile outages and performance issues.

Meanwhile the growing number of budget Mobile Virtual Network Operators — reselling access to the Telstra, Optus and Vodafone networks — has also failed to encourage more ns to change providers in search of a better deal. This year Telstra opened up its 4G network to reseller partners including Aldi Mobile, Woolworths, Telechoice and Better Life, before which MVNOs could only offer access to Telstra’s slower 3G network.

Of the two-thirds of ns who stuck with the same mobile telco over the last three years, 16 per cent did so because of limited access to rival networks in their area. Of the rest, 7 per cent stayed put because they found it too confusing to switch provider while 15 per cent felt that it required too much effort.

That leaves 68 per cent of people remaining with the same telco because they “like sticking with the same provider”. ns are “creatures of habit,” even though many could likely find a better deal if they haven’t changed telco in at least three years, says finder苏州夜总会招聘.au telco editor Alex Kidman.

“We like to stick to what we know, whether it’s receiving bills in the same format or punching the same number into a text message to see how much credit we’ve spent,” Kidman says. “While this offers a sense of security, it often means we’re spending more than we need to.”

“Phone companies don’t do themselves many favours with complex forms and processes for switching, but the reality is that a little struggle through the formalities can equal serious money left in your pocket rather than handed over to your telco.”

While the research figures don’t examine why ns prefer to stick with the same provider, Kidman says their motivations range from loyalty and sentimentality, to a desire to maintain the status quo or simple apathy. As ‘s incumbent telecommunications provider, Telstra still retains rusted-on home and mobile customers from its days as the government-owned Telecom .

Of those ns who have switched mobile provider in the last three years, 73 per cent did so in search of a better deal — some shopping around as their contract was set to expire. Meanwhile 30 percent cited “better coverage” as a factor in changing telcos.

“Telcos and providers are constantly competing for new customers and offering compelling deals,” Kidman says. “Those living in rural or regional areas may feel like they don’t have much choice, but the rise of virtual mobile providers using the networks of Telstra, Optus and Vodafone mean that they do actually have choices to make. Whether you’re fully metropolitan or remarkably rural there’s really no excuse for not shopping around.”

“Saving $20 per month over a 24-month contract adds up to a few hundred dollars you could spend elsewhere. Plan needs can change over time, particularly as we’re consuming more and more data, so it’s essential to regularly reassess whether you can get a better deal elsewhere.”

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