Canberra Times letters: Drug safer long-term choice

Drug companies cannot make claims about how much their product will improve one's life, but they must list every symptom experienced by people involved in trials, even if they're just part and parcel of the disease being treated.

All the symptoms in Kalydeco's statement, except cataracts and dizziness, are normal in CF.

She also suggests the benefit of improved forced expiratory volume (FEV1) may be outweighed by side effects.

FEV1 gives a decent estimate of quality of life. Once it gets much below 50 per cent of predicted, life is hard.

Once lung function is lost, it cannot be reversed or repaired.

No treatment in CF (or any area of medicine) is without drawbacks, and the existing treatments are not nice.

A lifetime of oral and IV antibiotics, anti-inflammatories, and other medications leave us with scarred, useless veins, osteoporosis by our 20s or 30s, reflux, tinnitus, and liver and kidney damage.

We regularly choose to put up with nausea, diarrhoea and photosensitivity caused by antibiotics to avoid more lung damage.

Nothing in CF is straightforward, but Kalydeco is a safer long-term choice than the suite of treatments we need without it.

I am not a candidate for either Kalydeco or Orkambi.

Katie Down, Narrabundah

Ian Warden ("Swept away in a capital dream", January 8, p.17) presents a worthy case for a Canberra version of the wonderful musical La La Land.

In my version, Seb, a ruggedly handsome jazz pianist, dreams of running his own Residents Action Group to prevent any six- storey buildings, swamps or development in Canberra.

He meets Mia, a gorgeous singer, whose ambition is to become a parking inspector.

They fall in love while stuck at a seven-traffic-light roundabout.

Seb's career is derailed after he's arrested for rolling down the lawns of Parliament House; Mia is left stranded in Woden waiting for the promised light rail to be built.

In an all-singing, all-dancing finale, Seb runs for the ACT Assembly as a pro-poker machine candidate, while Mia achieves fame and fortune singing to an empty Manuka Oval.

Simon Tatz, Curtin

Their clothes and customs are different to ours. They revere things that aren't quite civilised.

We feel intimidated by them. Afraid they'll assault us. We don't care that statistics show they don't increase crime rates.

They contribute a lot to our economy, but we print articles about their culture taking over ours. And they make too much noise. Am I talking about Asians, or Muslims? No, Canberrans would never be that intolerant. I am talking about our Summernats visitors.

Andrew Reeves, Turner

Noel Beddoe (Letters, January 10) holds to the time-honoured tradition of teacher bashing. It's nice to suggest Singapore holds teachers "accountable" (an often-used cliche), but he may want to note Singapore invests heavily in all facets of education.

Another country we would do well to emulate is Finland; all teachers have been supported to gain higher degrees. An Australian visitor to a Finnish school once asked what disadvantaged schools were like. The answer was "there are none".

Fancy those lazy Australian teachers wanting tenure. Huge numbers of our teachers are on short-term contracts and unable to enter into a mortgage. I suppose Mr Beddoe is happy to pay big dollars to employ doctors (probably not scientists, they can also live on dedication).

I was a teacher for over 40 years in public and private schools, and rarely if ever saw proper investment in education.

Dedicated teachers can prop up the system for only so long. Eventually high standards must be paid for, and it isn't cheap.

His last sentence "Current approaches are in need of urgent appraisal" is spot on, but probably not in the way he meant.

Bob Gardiner, Isabella Plains

Before using PISA scores to assess Australia's educational performance Ross Fitzgerald ("Australian education crying out for remedial help", Canberra Times, January 9) should inform us of the size of the error terms (which are considerable) of the test scores and the standardisation of sampling (which is not very even across nations) used.

These key measurement weaknesses make the rankings largely meaningless for diagnosing any need for remedial action. PISA test score rankings do allow grumpy old men, like Professor Ross Fitzgerald and myself, to let off steam about how standards have fallen since our school days when Australia was the brightest star in our southern hemisphere and a place at Oxford or Cambridge was the goal we dreamed of.

Dr Peter Smith, Lake Illawarra, NSW

I advised online to Access Canberra of the 20 Torrens Street, Braddon, fire danger from the one-metre-high dry grass on the nature strip and abandoned site (over a decade), admittedly on December 25.

On December 28 the reply was"ACTFR are aware of this site and are endeavouring to contact the owner to have the block cleaned up and maintained".

The site remains a high fire risk. I suggest the government has the block and nature strip cleaned up and provide the bill and fine to the owner when found.

Geoff Davidson, Braddon

Thanks for your article ("Curtin call to reduce size of development", January 11, p.1).

It's the latest in many residents' concerns about planning decisions: e.g. ("Forrest hotel consultation 'misleading', September24, 2016, p.17, "Soulless planning avoidable", letters, January7, "Disaster in Curtin", letters, January7).

It is noticeable the Curtin Group Centre Master Plan has not been finalised, nearly one year after comments closed.

This draft plan recommends a redevelopment height limit of two storeys.

Yet the the developers now want six, knowing this will reduce the winter sun in the town square and will also temporarily remove the public toilets presently on ACT land.

Not good developments for the commercial attractiveness of the centre.

It will also be quite disproportionate to the otherthree sides of single-storey buildings. I am unaware of any resident who welcomes thisproposal.

It seems, once again, a publicamenity in Canberra is set to be appropriated for privateprofit. Stick to the master plan – draft or final.Please.

Peter Graves, Curtin

We're told there's a looming oversupply of new apartments. Hopefully, developers will start offering better designs to move their products.

Over the years, accommodation standards have been cut back, in a pushy sellers'/absentee-landlords' market. Amenity and privacy have been sacrificed. Development densities have crept up and up.

Planners comply by notching up their dwellings-per-hectare settings, apparently ignoring scandalously high sold-apartment vacancy rates.

Gardens have disappeared. So have private in-flat entry spaces, generous living rooms, kitchen and bathroom windows, separate dining rooms, bedrooms all with good-sized windows, spacious private balconies, quiet lifts, attractive common spaces, good acoustic separation, exemplary solar access – the list goes on.

Irrespective of market forces, all of these items need improvement via better mandatory controls.

Otherwise population health must suffer.

Jack Kershaw, Kambah

I wish that Norwegian or Swedish politicians could replace our politicians. They'd tax us sufficiently so that we could educate everyone fairly. We could reduce unemployment, drug addiction and crime and have a smaller prison population.

We could include the mentally disabled and mentally ill in the workforce. We could ensure decent pay and working conditions. We could have preventive health programs and run our hospitals well.

We could stop selling off strategic ports and sections of the electricity grid to China. People wouldn't be angry with the Government; there'd be no need to redirect that rage onto a bunch of helpless refugees.

We could use our abundant sunshine and wind to tackle climate change properly.

We could stop using negative gearing as a way of getting snouts into the inequality trough.

We could build enough government housing to eliminate homelessness.

Of course this won't happen. Instead our wonderful nation is badly run and tragically divided. A massive chunk of ice is breaking off Antarctica but our politicians seem too mesmerized by donations to care. There are beggars outside the shopping centers and people sleeping on the street. Like the swagman in Waltzing Matilda, they die off while the squatters ride on.

Rosemary Walters, Palmerston

It is fashionable these days to criticise the Prime Minister for just about everything.

I am not an especial fan of Malcolm Turnbull nor am I a member of the Liberal Party (I am in fact a member of a minor party), but this continual carping is not doing the country any good.

Of course Mr Turnbull makes mistakes – which political leader doesn't?

Australia faces serious challenges and for the good of us all we must hope that he can get on with his job.

In his article ("Wolves among sheep" January6, p.20) John Hewson says Turnbull "sold out to conservative forces to gain the leadership, and [is] now having to govern with just a [1-] seat majority".

In the first place, Turnbull was drafted (in shades of Rudd v Gillard and Gillard v Rudd) because Liberal senators and MPs perceived – rightly or wrongly – that they were facing an electoral wipeout under Tony Abbott.

Turnbull did secure the Coalition's return to government, albeit by the slenderest of majorities. So who is the learned professor to sneer at Turnbull's 1-seat majority?

Vigorous criticism is the life-blood of a heathy political system but it should be reasoned and principled criticism, not mere sniping.

The last thing we need right now is yet another change ofleadership.

Alvin Hopper, Dickson

Greg Cornwell (letters, January9) poses a confusing question : "Do people who oppose the death penalty also oppose euthanasia?"

The death penalty is a punitive act by the state following a court decision. Euthanasia is a humane option for terminally ill people with no quality of life. They are granted the right to die with dignity, at a time and place of their choosing, often with medical assistance.

There is no reason to bind these two life-ending acts into a given endorsement or opposition. Surveys would likely reveal many people who oppose the death penalty will support voluntary euthanasia.

A humanistic response would demonstrate there is no contradiction in people opposing the death penalty while supporting euthanasia.

As for Greg Cornwell's views on the life and fate of life-sentenced prisoners, may I suggest he read "One Hundred and Three" by HenryLawson.

Keith McEwan, Bonython

The PM promised during the election campaign that there would never be any changes to superannuation on his watch. This promise has been broken some six months into the newterm.

P.R. Temple, Macquarie

ODD LOGIC

If a government minister travelling to Melbourne on business from interstate goes on a coffee break and buys one of the excellent soy lattes Melbourne has to offer, is he misusing his travel allowance? If no, why would buying anything else be any different?

Benjamin Djung, Canberra

Perhaps we shouldn't get too fussed about how our politicians prioritise looking after No.1. After all, if they couldn't look after themselves, what chance would we have?

Ed Highley, Kambah

Parliamentarians involved in wrongfully claiming taxpayers' money should also pay back any cost involved in determining that case.

Sankar Kumar Chatterjee, Evatt

Hey, wait a minute. Did I just buy a Gold Coast apartment? Silly me. Well I'll be more careful next time.

Lance Lawton, Cooma

I wish I could have had my flying paid for by the taxpayer like Sussan Ley; what a rort!

Norman Lee, Weston

WRONG DIRECTION

The Trumpeters seem to think that a new era in US-Russian relations is nigh.

Strong white men allied against the yellow peril; they would think that.

But does anyone seriously think that Putin would see the US, which may reverse its political direction in as little as four years, as a better long-term ally than the Chinese?

They're dreaming.

S. W. Davey, Torrens

Michael McCarthy (Letters, January 6) is absolutely correct.

The One Nation and Donald Trump supporters are striving for a future that's unrealistic and unobtainable, and handing power to those who sold them lies.

In doing so they're ultimately delivering a future that nobody wants.

James Allan, Narrabundah

Just who in his or her right mind voted for Mr Trump? Can the majority of the American voters be that dumb?

Mokhles Sidden, Strathfield

SEATING WOE

I sympathise with Edna McLean (Letters, January 10). It seems ACT government policy to provide little, unusable things. Users of the hospital will have noticed the kindergarten seating in the waiting areas.

Woe betide the large, infirm or just plain old.

I don't fancy your chances of finding the one or two larger seats provided not in use.

Peter Dale, Page

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