Category Archives: Asthma

The US healthcare system is at a dramatic fork in the road | Adam Gaffney

The US healthcare system – and with it the health and welfare of millions – is poised on the edge of a knife. Though the fetid dysfunction and entanglements of the Trump presidency dominate the airwaves, this is an issue that will have life and death consequences for countless Americans.

The Congressional Budget Office’s (CBO) dismal “scoring” of the revised American Health Care Act (AHCA) on Wednesday made clear just how dire America’s healthcare prospects are under Trump’s administration. But while the healthcare debate is often framed as a choice between Obamacare and the new Republican plan, there are actually three healthcare visions in competition today. These can be labelled healthcare past, healthcare present, and healthcare future.

Let us begin with healthcare past, for the dark past is precisely where Republicans are striving to take us with the AHCA. The bill – narrowly passed by the House on 4 May – is less a piece of healthcare “reform” than a dump truck sent barreling at high speed into the foundation of the healthcare safety net.

Wednesday’s CBO score reflects the modifications made to the AHCA to pacify the hard-right Freedom Caucus, changes that allowed states to obtain waivers that would relieve health insurers of the requirement that they cover the full spectrum of “essential healthcare benefits”, or permit them to charge higher premiums to those guilty of the misdemeanor of sickness, all purportedly for the goal of lowering premiums.

In fairness, the CBO report did find that these waivers would bring down premiums for non-group plans. This, however, was not the result of some mysterious market magic, but simply because, as the CBO noted, covered benefits would be skimpier, while sicker and older people would be pushed out of the market.

In some states that obtained waivers, “over time, less healthy individuals … would be unable to purchase comprehensive coverage with premiums close to those under current law and might not be able to purchase coverage at all”. Moreover, out-of-pocket costs would rise for many, for instance whenever people needed to use services that were no longer covered – say mental health or maternity care.

Much else, however, stayed the same from the previous reports. Like the last AHCA, this one would cut more than $ 800bn in Medicaid spending over a decade, dollars it would pass into the bank accounts of the rich in the form of tax cuts, booting about 14 million individuals out of the program in the process. And overall, the new AHCA would eventually strip insurance from 23 million people, as compared to the previous estimate of 24 million.

It’s worth noting here that Trump’s budget – released Tuesday – proposed additional Medicaid cuts in addition of those of the AHCA, which amounted to a gargantuan $ 1.3tn over a decade, according to the Center on Budget and Policy Priorities.

The tax plan and budget – best characterized as a battle plan for no-holds-barred top-down class warfare drawn up by apparently innumerate xenophobes – would in effect transform the healthcare and food aid of the poor into bricks for a US-Mexico border wall, guns for an already swollen military, and – more than anything – a big fat payout to Trump’s bloated billionaire and millionaire cronies.

What becomes of this violent agenda now depends on Congress – and on the grassroots pressure that can be brought to bear upon its members.

But assuming the AHCA dies a much-deserved death – quite possible given the headwinds it faces in the Senate – we will still have to contend with healthcare present.

Last week, the Centers for Disease Control released 2016 results from the National Health Interview Survey, giving us a fresh glimpse of where things stand today. And on the one hand, the news seemed good: the number of uninsured people fell from 48.6 to 28.6 million between 2010 and 2016.

On the other hand, it revealed utter stagnation: an identical number were uninsured in 2016 as compared with 2015, with about a quarter of those with low incomes uninsured last year (among non-elderly adults). It also suggested that the value of insurance is declining, with “high-deductible health plans” rapidly becoming the rule and not the exception: for the privately insured under age 65, 39.4% had a high-deductible in 2016, up from 25.3% in 2010.

Healthcare present, therefore, is an unstable status quo: an improvement from healthcare past, no doubt, but millions remain uninsured and out-of-pocket health costs continue to squeeze the insured.

Which takes us to the third vision, that of healthcare future. As it happens, another recent development provided a brief glimmer of hope for that vision. As the Hill reported, the Democratic congressman John Conyers held a press conference yesterday (Physicians for a National Health Program, in which I am active, participated) to announce that his universal healthcare bill – the “Expanded & Improved Medicare For All Act” – had achieved 111 co-sponsors, amounting to a majority of the House Democratic Caucus and the most in the bill’s history.

This bill – like other single-payer proposals – is the precise antithesis of Paul Ryan’s AHCA. Rather than extract coverage from millions to provide tax breaks for the rich, it would use progressive taxation to provide first-dollar health coverage to all.

Which of these three visions will win out is uncertain, but the outcome of the contest will have a lasting impact on the country. We can only hope that the thuggish, rapacious vision championed by Trump and his administration does not prevail.

‘Writing about Beethoven helped me come to terms with my own hearing loss’

As someone who makes a living as both a soprano and a playwright, I should find Beethoven an obvious subject of interest. Even more so now, as 18 months ago I was diagnosed with a hearing loss condition called acoustic neuroma or vestibular schwannoma, which will eventually lead to complete hearing loss in my right ear. I already often sleep through my alarm if I have my good ear jammed into my pillow.

One in six people suffer some form of hearing loss. There is no reason to suppose musicians are magically exempt from that statistic. Yet you wouldn’t know it. That fear of admitting to hearing loss hasn’t changed since Beethoven’s day. It is still simply too risky. Hearing is an essential tool for a musician, and human beings are not very good at understanding subtleties: that it is possible to have hearing loss, yet still hear enough to continue being a musician.

But I almost certainly wouldn’t have chosen to write a play about Beethoven were it not for Krysia Osostowicz, leader of the Dante Quartet. We met shortly after my diagnosis, ostensibly to discuss fundraising for the quartet’s tour of Japan. But instead we ended up talking about their plans to perform the entire cycle of Beethoven’s 16 or 17 string quartets (depending on how you count them) over six concerts. Krysia had ideas for combining the quartets with readings and narrative. I told her about the positive reactions to my work with the Marian Consort for their performances of my concert-cum-play Breaking the Rules, about 16th-century composer and murderer Carlo Gesualdo.

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The Marian Consort perform Breaking the Rules

“Would you be interested in writing a narrative for Beethoven to accompany the series?” Krysia asks.

I hesitate. One of the reasons I hadn’t considered writing about Beethoven is that in some ways it felt too personal. The one thing everyone knows about Beethoven is that he was deaf. It would be impossible to write a piece without tackling his hearing loss, and that would mean looking at my own journey full in the face. I wasn’t sure I was ready for it.

For a start, my hearing loss wasn’t common knowledge. I was careful who I told at first. I had always been complimented by other musicians on my intonation, and it was a source of pride. I was desperate to hang on to that skill and mostly, so far, I have learned to adapt, making good use of my left ear.

soprano Clare Norburn.


Challenge … soprano Clare Norburn. Photograph: Robert Piwko

Practising on my own is easy. Working with other musicians – for me the true joy of being a musician – is more challenging. It’s because you hear both inwardly and outwardly when you work with others. In your inner ear you are loudest of all, and when half of the source of your information from the outside world (about how to blend, tune and balance) is by degrees cut off, it’s hard.

But mostly it’s about fear – of what others will think. And this is an experience that I clearly share with Beethoven, although his deafness was so much more devastating than mine. And his response to deafness is simply extraordinary – an inspiration.

It was in summer 1801, when he was 30, that Beethoven first admitted in a letter to his increasing deafness. A year later came his “dark night of the soul” moment. Beethoven suffered not only from increasing deafness but from what specialists think may have been hyperacusis – a rare condition where pain is caused by loud noises, accompanied by hearing loss. His physician suggested he move from the noise of the city to give his ears a rest. So the composer went to Heiligenstadt, a village now on the outskirts of Vienna. There he penned his Heiligenstadt Testament, in which he wrote frankly about the effect of his increasing deafness. He admitted how isolated he felt, how he had withdrawn from society because he could not hear, and how, as Vienna’s foremost pianist and composer, he could not admit to his deafness.

He admitted to considering suicide. “Only my art, that is all that held me back,” he wrote. And from that moment of true despair came an extraordinary hope, an artistic commitment: “It was impossible for me to leave this world until I had brought forth everything that was within me.”

This really resonated with me. As I have come to terms with my hearing loss, it too has ultimately been a call to action. Today suddenly has such potency. Who knows what I will be able to hear tomorrow? I must write, must sing, now. No more putting things that matter on hold for an uncertain future.

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The Dante Quartet perform Beethoven’s String Quartet No. 16

So I said yes to Krysia and the Dante Quartet. And, as I wrote a funding application to Arts Council England and researched Beethoven’s life, I realised that making this a first-person narrative was an opportunity to shine a light on some of those hearing loss nuances, and to shout loud about Beethoven’s extraordinary achievements.

The words I put into Beethoven’s mouth speak for me, for all musicians who silently suffer hearing loss: I’d always been gauche at those society soirees. So imagine me now. I mean, there’s a limit to how many times I can ask people to repeat themselves without giving myself away.

“I am a musician, a composer. Hearing is all – it defines me. The pricking of my skin shows me the future. Society is unthinking. There is black and there is white. Hearing. Deafness. And nothing in between.

“But the truth is sometimes grey. I have not lost my critical faculties overnight. I can still hear when the tenor is flat, when the horn comes in a beat late.

“Yet I fear that the great and good of Vienna will think: poor Beethoven. He has lost his edge.”

The extraordinary thing about Beethoven’s hearing loss journey is that he found a way forward at every stage. Once he accepted his deafness at Heiligenstadt, it was no longer a source of shame, and he was open about it from then onwards. Even for the last 10 years of his life, when he could hear nothing, he kept composing. Many people will know the story of his conducting what seems to be an orchestra in his head at the premiere of his 9th Symphony. Eyes still shut, he had to be stopped and shown the smiling musicians, the appreciative audience applauding.

He had clearly found a way of hearing in an inner soundscape, which gave me an idea for a way into my series of six concert-plays for the Beethoven Quartet Journey. Dante are the string quartet Beethoven hears in his head. My Beethoven explains this to the audience: The music in my head. It’s flawless. Perfectly in tune. Each articulation lifted clean off the page.

David Timson as Beethoven in Clare Norburn’s Beethoven Quartet Journey.


David Timson as Beethoven in Clare Norburn’s Beethoven Quartet Journey. Photograph: Nick Harries

“My very own imaginary quartet … they play newly minted movements perfectly.

“And they are blessedly silent. None of that moaning that my music is unplayable!

The narrative is about much more than Beethoven’s hearing loss. Writing six concert-plays means a big canvas, and I wanted to balance the script to cover both the man and his music. One of the most enjoyable aspects of the collaboration with the quartet has been finding ways to provide an accessible and lively narrative, to explain what Beethoven does musically in a way that makes the works understandable for non-musicians, but also brings insights even for those who know the quartets well.

Ultimately, I learn from Beethoven that I am lucky. He shows me that hearing loss in one ear is nothing, even for a musician. “Find your own way,” he tells me. “And keep finding it. The time is not tomorrow. The time for action is now.”

Charlie Gard doctors can stop providing life support, court rules

Doctors can stop providing life-support treatment to a sick baby who is being kept on a ventilator at Great Ormond Street hospital, appeal court judges have ruled.

The decision comes after a legal battle by Chris Gard and Connie Yates, who had sought to keep their son, Charlie Gard, alive long enough to travel with him to the US for experimental treatment that may have prolonged his life.

Connie Yates and Chris Gard.


Connie Yates and Chris Gard. Photograph: Gareth Fuller/PA

Charlie, who was born on 4 August last year, had a form of mitochondrial disease that causes progressive muscle weakness and brain damage. He can only breathe through a ventilator and has been fed through a tube.

Lord Justice McFarlane, Lady Justice King and Lord Justice Sales analysed evidence at a court of appeal hearing in London. A high court judge last month ruled against a trip to the US, and in favour of Great Ormond Street doctors who said they believed it was time to stop providing life support for Charlie.

Richard Gordon QC, who led Charlie’s parents’ legal team, told the appeal court judges that the case raised serious legal issues, including the possibility that Charlie might be being unlawfully detained and denied his right to liberty.

“They wish to exhaust all possible options,” Gordon said in a written outline of Charlie’s parents’ case. “They don’t want to look back and think ‘what if?’. This court should not stand in the way of their only remaining hope.”

Gordon said judges should not interfere with the exercising of parental rights and added: “What is really at stake in this case is the state, on a massive scale, intruding in your right to private and family life.”

But Katie Gollop QC, who led Great Ormond Street’s legal team, suggested further treatment would leave Charlie in a condition that gave him “no benefit”. The therapy proposed in the US was “experimental” and would not help Charlie, she said.

“There is significant harm if what the parents want for Charlie comes into effect,” she told the appeal judges. “The significant harm is a condition of existence which is offering the child no benefit.”

Gollop said nobody knew whether Charlie was in pain, “because it is so very difficult because of the ravages of Charlie’s condition. He cannot see, he cannot hear, he cannot make a noise, he cannot move.”

UEA course cut a blow for mental health work | Letters

All the parties in the general election have adopted mental health as a key issue. But this enthusiasm is not reflected on the ground and the electorate should not be fooled. We are students and former students on the internationally renowned counselling programme at the University of East Anglia. We trained to be counsellors, or “shrinks”, to quote Prince Harry in his recent interview. But now the university has closed the course and even made it impossible for some students to complete their professional qualification. As part of this draconian process, in which consultation was at a minimum, responsibility to students, staff and the wider local community has been completely deprioritised. This is exactly the opposite of what the princes, applauded by the government, were calling for.

The impact is not only on the course itself, but also on those therapy organisations where students have for many years worked as volunteers on placement and beyond, and on the availability of the kind of in-depth listening relationship – described as so crucial by the princes – in the university’s own counselling service. The management-speak reason given by the university for this closure is “a need for greater alignment of courses and a more coherent portfolio of activity centred on the teaching of education theory and practice”. What is the point of accenting mental health if there won’t be any counsellors to deliver it?
Sara Bradly, Dr Rachel Freeth, Bridget Garrard, Nikki Rowntree
Norwich

Join the debate – email guardian.letters@theguardian.com

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Christy Turlington: ‘The closest I’ve come to death? The birth of my daughter’

Born in California, Christy Turlington Burns, 48, was scouted to be a model at 14 and went on to become one of the original supermodels. After suffering a postpartum haemorrhage in 2003, she took a masters in public health and set up non-profit organisation Every Mother Counts, addressing global maternal health. The charity has partnered with Toms shoes. She is married to actor Ed Burns, has two children and lives in New York.

When were you happiest?
Before kids, when I was 13 or so, on the back of my horse, running at full speed in an open pasture. Post kids, happiness happens often, but in more subtle ways. I now prefer the word “content”.

What is your greatest fear?
I don’t fear anything but fear itself. Fear makes humans behave inhumanely.

What is your earliest memory?
I have a collage of memories beginning around age four: my first walk alone to a store or to school, and early trips to Central America with my mom to visit her family.

Which living person do you most admire, and why?
A midwife named Jennie Joseph. She is a tireless activist for women, family health and equal access to quality maternity care.

What is the trait you most deplore in yourself?
I sometimes set unreasonably high expectations of myself and those around me.

What was your most embarrassing moment?
There are too many to name, but none of them keeps me up at night.

What makes you unhappy?
Government policy decisions that negatively impact the health and wellbeing of women and families.

What do you most dislike about your appearance?
Having to talk about it.

Who would play you in the film of your life?
The world does not need a film about my life.

What is the worst thing anyone’s said to you?
A boyfriend once told me there was always going to be someone smarter, funnier and prettier than me, which at the time felt pretty mean, but it was true.

To whom would you most like to say sorry, and why?
To strangers. Living in New York, I see individuals every day who are invisible to so many. I want to say sorry that so many of us think their pain and suffering is not our own.

What was the best kiss of your life?
The first kiss from my husband and every one since.

What has been your biggest disappointment?
My father’s death before my marriage, and motherhood.

If you could edit your past, what would you change?
I might speed up a few details, but wouldn’t change anything, other than my dad still being here.

How do you relax?
Yoga, running, recreational reading.

What is the closest you’ve come to death?
The birth of my daughter.

What keeps you awake at night?
The fact that at least 300,000 women die every year from pregnancy and childbirth-related issues that are largely preventable.

What is the most important lesson life has taught you?
That I am more than I thought I was.

How would you like to be remembered?
As someone who didn’t waste a minute.

Drug and alcohol charity Lifeline Project collapses

One of the UK’s leading drug and alcohol treatment charities has collapsed days after the Charity Commission launched an investigation into claims that it had critically weak financial controls.

Frantic efforts are being made to save the jobs of 1,300 employees of the charity, Manchester-based Lifeline Project, and the services it provides for 80,000 people a year, including prisoners in 22 jails and young offender institutions.

Staff were told on Thursday that the charity was seeking to transfer services to other providers and warned that not all the work the charity does would continue.

The shock failure of Lifeline follows the collapse of the charities Kids Company in 2015 and 4Children in 2016 and is likely to reignite the debate about the running of essential public services by charities.

Lifeline was set up in 1971 and grew particularly rapidly in recent years. Its annual income soared from £26m in 2012-13 to almost £62m in 2015-16, when it reported annual growth of 45%.

It was formerly chaired by Paul Flowers, the disgraced former Methodist minister and Co-op Bank chair whose drug use was exposed in 2014. He was asked to resign from Lifeline in 2004 over allegedly excessive expenses claims.

Allegations of mismanagement were made to the commission last month by Roger Howard, a former trustee of Lifeline’s board, who is a leading figure in the drug and alcohol treatment field and served as chief executive of the UK Drug Policy Commission.

Howard said on Thursday: “Those of us who work in the charity sector and have a long history of serving on boards or as executives know that good governance is absolutely crucial. We have seen examples of other bodies, like Kids Company, where governance and leadership has been questioned.

“It’s really critically important to ensure that organisations delivering large volumes of public services have the right assurances in place.”

Howard served on Lifeline’s board from December 2015 to November last year, when he was asked to resign after seeking to raise concerns. These included the sudden rundown of the charity’s working reserves.

The Charity Commission said on Thursday that Lifeline’s collapse highlighted the need for tight financial controls and oversight by charity trustees.

Paul Holdsworth, the commission’s chief operating officer, said: “We are sad to hear of the charity’s planned closure, though note that the trustees have worked to ensure that the majority of its services will continue and that the impact on beneficiaries and staff is managed and minimised.

“In the meantime we are engaged with the charity and its trustees, both to assess the events that have led up to this outcome and to ensure that trustees fulfil their duties and responsibilities in winding the charity up and passing its services to another charity.”

The charity runs drug and alcohol services across much of England and in Scotland. Its last annual report said it employed almost 1,500 people, but it is believed that many have been made redundant in recent weeks in efforts to stay afloat.

The biggest not-for-profit provider of treatment services, CGL, confirmed that it had been asked by Lifeline “four or five weeks ago” to step in to help and that it was working to take over “a significant proportion” of its projects.

David Biddle, CGL’s chief executive, said: “We are moving to ensure the security and stability of projects that deliver services to vulnerable people across the country. We are providing the resources to ensure that they are able to continue.”

CGL, which stands for Change, Grow, Live, has annual income of £158m and employs 2,800 people. Biddle said it would “initially” make no job cuts among the Lifeline staff it was taking on, including its head office team, and he praised the role being played by Lifeline’s long-serving chief executive, Ian Wardle.

Lifeline did not respond to requests for comment.

Yes, Barbie has got bigger. But her old body-image message endures | Afua Hirsch

“Eurgh! This doll’s fat!” Those were the words of my five-year-old daughter and seven-year-old niece on encountering the Fashionistas range of new-size Barbies in a toyshop this weekend. To describe these dolls as “plus size” would be an exaggeration. But, given the emaciated state of regular Barbies, I can see what the fuss is about. These dolls look normal – and normal, in a Barbie context, looks decidedly weird.

I have to act. “See these Barbies,” I say, pointing at the more traditional ones. “They are really hungry. They haven’t had enough to eat. But these new Barbies” – I hold up a Fashionista – “feel much better. They’ve got strong legs, see?”

“Ohhhh,” one of them nods. I realise my explanation is not perfect: I don’t want these two telling skinnier children in the playground that they’re malnourished. But given that traditional Barbies represent the body shape of 1 in 100,000 real-life women, have a waist size 20cm smaller than a group of anorexia sufferers, and would have insufficient body fat to menstruate, I’ll take my chances.

There is no ideal way to counter the messages these impressionable young girls are absorbing about body image. I welcome the fact that Barbies now come in four body types and seven skin tones, and wear their hair in braids or Afros. Beyoncé’s stylist, Marni Senofonte, who designed those dolls, says: “I want a girl who is not necessarily small to say: ‘OK, I could wear a crop top, and I could wear jeans with big holes in and fishnets underneath it, and I am cute.’”

That’s great. But let’s not forget that the legacy of old Barbie – who in 1963 was released with a book entitled How to Lose Weight – looms large. So much so that when a five and seven year old – neither of whom have yet graduated on to being critical of their own bodies, thankfully – see a doll with a normal figure, their initial reaction was disgust.

The small world of Brexit

Theresa May greets Jean-Claude Juncker at 10 Downing Street.


Theresa May greets Jean-Claude Juncker at 10 Downing Street. Photograph: Carl Court/Getty Images

There has been plenty of debate about the estimated rise in hate crime since the EU referendum, which ranges from 40% to 100%. But less often discussed is the impact of the vote on British people’s sense of identity.

A recent report suggests that this is widespread, and perhaps more enduring. It finds that, since the referendum, ethnic minorities in the UK are now less likely to identify as British, and more likely to claim the identity of their ethnic heritage instead.

White British people too are becoming less likely to embrace Britishness or other national identities, such as English or Scottish, and more likely to identify with their local area or community. They have, according to Opinium, “withdrawn from a wider sense of belonging to focusing in on the immediate world around them”. Long after the bickering of Theresa May and Jean-Claude Juncker, these injuries to our identity will remain.

Celebrity shares

Stormzy at the Brixton Academy.


Stormzy at the Brixton Academy. Photograph: PJP photos/Rex Features

Labour has now pledged in its manifesto to scrap university tuition fees in its manifesto launch todayyesterday. But if, as is widely predicted, the Tories win, fees are likely to rise above the current £9,000 a year; and as long as they do so, inevitable comparisons will continue to be made with the cost of study in the US, which currently averages a cool $ 33,000 (£26,000) a year at a private college.

If we are going to have US-style fees, we will need US style benefactors, made generous by US-style salaries, which are 50% higher than UK equivalents in some sectors.

In the meantime, celebrities have been stepping in. The UK rapper Stormzy this week became the latest to dip into his fortune, giving a final-year Oxford student £9,000 to do her master’s at Harvard. With some of the funding promises currently going around, I wouldn’t be surprised if sourcing donations from superstars appears somewhere as an election pledge.

Mentally ill woman’s treatment in Lismore hospital ‘deeply distressing’, says Greg Hunt

Appalling footage of a mentally ill woman stumbling around a NSW hospital, covered in faeces and falling over at least 25 times before she died of a brain injury, has shocked the public and politicians.

Footage released by the coroner shows the woman, mother-of-two Miriam Merten, locked in a seclusion room for more than five hours at the Lismore Adult Mental Health Inpatient Unit on 1 June 2014.

A nurse unlocks Merten’s room the next morning, before she is left to stumble around the hallway naked, eventually collapsing in a corner before an emergency crash cart is rushed in by staff.

Merten died at Lismore base hospital on 3 June 2014.

A coronial inquest found she died of “traumatic and hypoxic brain injury caused by numerous falls and the self-beating of her head on various surfaces, the latter not done with the intention of taking her own life”.

A senior nurse at the facility was aware Merten had been sedated with psychotropic drugs and fallen on at least one occasion, but failed to take appropriate action, the coroner Jeff Linden found.

A second nurse was also involved.

“The lack of care and compassion showed to the deceased was monumentally disgraceful and appeared to emanate from an: ‘Oh, it’s just Miriam’s mentality,” Linden said in his inquest findings.

“To see a mentally ill person in 2014 at a public hospital in NSW treated in such an appalling manner is really beyond comprehension.

“While this appears not to be a system failure it is clearly a serious human failure.”

The New South Wales Labor party on Friday called for an urgent parliamentary inquiry into the state’s mental health facilities.

Opposition mental health spokeswoman Tania Mihailuk says the incident is a “Don Dale moment” for the NSW mental health system and demonstrates “abhorrent mistreatment and abuse”.

Mihailuk said the government should apologise to Merten’s family and conduct a full and transparent review.

The federal health minister Greg Hunt said the two nurses “are no longer in service”, and the state government had Canberra’s “full support for the strongest possible steps against what was completely unacceptable”.

“I have (seen the footage) … it is deeply distressing,” Mr Hunt said in Sydney on Friday.

The NSW premier Gladys Berejiklian echoed that view.

“We’ll do everything we can to make sure this never happens again,” she told reporters.

Pfizer to give out breast cancer drug free while awaiting NHS decision

A drug described as one of the most important advances in treating breast cancer in the past 20 years is to be given to women in the UK for free while the medicines regulator decides whether it should be available on the NHS.

The National Institute for Health and Care Excellence’s provisional decision in February that palbociclib should not be routinely funded on the NHS in England was decried by patients but its final appraisal has been paused for the drug manufacturer Pfizer to present further clinical data.

In the meantime, Pfizer has said it will make palbociclib available free of charge. The drug in combination with another can stall the growth of the cancer for about 10 months in comparison with existing treatments.

Fiona Hazell, director of policy and engagement at the charity Breast Cancer Now, said: “This is an unexpected lifeline for thousands of women living with this type of breast cancer. We are delighted that Pfizer have listened to our campaigners and have found a way to enable patients to access this first-in-class drug in the short term.

“While only an interim measure, more than 16 women every day could have their lives changed by this drug during this window. Palbociclib can offer a large proportion of patients with incurable metastatic breast cancer significant extra time before their disease progresses – time that can be truly invaluable to them and their loved ones.”

She said anyone who thought they might be eligible should speak to their doctor, but also urged Nice to reach agreement with Pfizer on making it available on the NHS to anyone who needed it.

At the time of the draft guidance that recommended palbociclib be rejected, Dr Nicholas Turner, team leader in molecular oncology at the Institute of Cancer Research and consultant medical oncologist at the Royal Marsden in London, described the drug as “one of the most important advances in treating the most common type of breast cancer in 20 years”.

The ICR and Breast Cancer Now both urged Pfizer to reduce the price to allow it to be offered on the NHS. Nice said at the time that a full course of treatment would cost £79,560 and the benefits were “still not enough to make palbociclib cost effective at its current price”.

It estimated that about 5,500 people in England – out of 45,000 new diagnoses of breast cancer each year – would potentially be eligible for treatment with the drug.

Results of a trial in 666 women with advanced breast cancer, presented at the American Society of Clinical Oncology meeting in Chicago last June, showed that taking palbociclib in combination with letrozole increased progression-free survival for a median 24.8 months compared with 14.5 months for letrozole alone.

The free programme is expected to be open for a maximum of five months – closing six weeks after Nice issues final guidance on the drug, or on 30 September, whichever is earlier – with access being dependent on individual NHS trusts signing up to the scheme.

Pfizer said women who took up the offer would receive the full duration of treatment, regardless of Nice’s final decision.

A spokeswoman for the company said: “Pfizer believes women with metastatic breast cancer deserve access as soon as possible to this innovative medicine that has been shown to significantly increase progression-free survival.

“Acknowledging calls from physicians and patient groups across the UK for timely access to palbociclib, Pfizer has made the decision, in this instance, to provide palbociclib free of charge whilst the appraisal process continues.”

Tory tax cuts putting pressure on the NHS | Letters

‘Voters deserve no soundbites,’ Marr tells May

Whenever Theresa May finds herself in a corner over the NHS she repeats the mantra: you require a strong economy to have an NHS in the first place (Marr grills May, 1 May). That is a classic example of a necessary but not a sufficient condition. It obviously helps to have a strong economy but a nation has to get other decisions right.

The US has a strong economy but a seriously deficient public health service due to large reliance on insurance companies for facility and corporations providing health cover for employees.

Cuba has a weak economy but an excellent health service due to the right decision on prioritising public health.

In the UK the NHS is in difficulties due to the Tory government prioritising tax breaks for corporations and the better off instead of using the finance to meet the needs of an ageing population with increasing quantities and complexities of treatments required. PFI and privatisation have also not helped.
Nigel de Gruchy
Orpington, Kent

The political shock-horror of the shortage of nurses misses the point of why so many NHS staff are not British or/and are leaving. At the weekend I had a cardiac physiologist to stay – ie, not a doctor or a nurse but an essential member of the team dealing with heart attacks on emergency call-out at night, and for checking heart problems during the day. The night on-call emergency rotas are made to follow a full day’s work, so no sleep for up to 24 hours is common. It is worse when you are sent home at about 4am and drop into an exhausted sleep only to be woken again to go to work an hour or two later (or not daring to sleep in case the phone rings). My guest says jobs are harder to fill in hospitals where you can be on call for a night in between two normal days – ie, up to 36 hours’ continuous working for patients who are in immediate danger of death.

These staff do not have the powerful BMA doctors’ union acting for them, and such practices have become normalised and in agreement with unions. Politicians claim to be making the best use of taxpayers’ money. Not in my name please! Sleep deprivation is the reason my guest and many others are looking to leave the job they otherwise found satisfying after years of training and building up their expertise.
Name and address supplied

I wish to point out the connection between the two articles on cancer drugs and end-of-life care in Friday’s paper. In the cash-constrained NHS, expenditure in any area means that money cannot be spent elsewhere. So when £1.27bn goes on very expensive new cancer drugs (Report, 28 April), not curative and with zero or marginal outcome benefit, it cannot be spent on specialist palliative care or “hospice at home” services. The consequence is that those same patients, within weeks, cannot be supported in their wish to die at home (Report, 28 April). Many more people would have been helped by the latter investment.
Dr Charles Turton
Burgess Hill, West Sussex

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