'Both My Sons Deserve to Live': A Mother's Plea for Quicker Action from the FDA

Reblogged from Health & Family:

Austin and Max Leclaire are brothers. Austin is older, Max is younger. Like most siblings, they have many things in common and just as many that set them apart. For now, though, their strongest bond is over something they share — Duchenne muscular dystrophy (DMD), the most common lethal genetic disorder among children. Duchenne’s hallmark is increasing muscle weakness that eventually makes it hard to breathe and confines kids to wheelchairs, which is where Austin finds himself these days.

Read more… 1,598 more words

It is a genuine dilemma in this age of new-fangled "molecular" drugs, that some seem to work very well during their first human trials, but we have to wait years to get them to the public. Of course there is massive cost to consider in some cases, but I don't know about eteplirsen. Public health advocates can have a terrible time deciding if a few people can have an expensive drug vs. a lot of people getting a cheap one. For instance, how many doses of polio vaccine would you trade for one of eteplirsen? These are the realities of government budgets. I wouldn't like to do it, would you?  

Day 30 NaBloPoMo: Tax, benefits and Will Hutton

I can’t get the Will Hutton book out of my head [Them & Us]. I’ve been reading a few pages every night before I go to sleep and he says a lot of things I’ve been thinking for a long time.

The book is about the outcome of the past 25 years of democratically elected government in the UK. It is a critique from a position which is outside the two major parties there- neither Conservative nor Labor, and it’s certainly not in line with those new Democrats who are sharing the helm currently. The theme of the book also matches what has happened in Australia- the left has gone so far to the right, its difficult to tell what they’re in favour of!

I see the crux of the problem, (and WIll Hutton seems to see about the same), as loss of a sense of being a nation or community of human beings. People have become divided into Them and Us- it doesn’t matter if you are the rich Them or the Poor The [or one of the 'Us'es]. People don’t think of themselves as being part of a whole that includes a whole range of people who, by living under the same government in the same, undivided country have tacitly agreed that the government should try to balance things out between the haves and the have nots. We don’t need any government if we’re going to keep things amongst Us, or they are going to keep everything amongst Them.

Campaign against universal health care

Imagine if a road gets built to the houses with rich enough people to pay for it, but not to the houses who have nobody with enough left over to contribute. In a mixed neighbourhood, which most are unless they are gated, the road would be full of gaps as it passed the houses of the less wealthy people. When the well-off were considering it together, they thought it would work quite nicely, but then they discovered that the nice people next door who had come to their Christmas barbecue for the last 20 years didn’t have enough money left over from their food, mortgage and bills to contribute to road-building. What an affront- they’re certainly NOT going to invite them next year!

We elect governments because they can organise building a road with no gaps by balancing out the contributions of everyone through taxation. Then we are all happy to have a smooth road to drive on, whether we drive a new Lamborghini or an old Volkswagen.

In Hutton’s book he says we have forgotten the real meaning of fairness, so that different groups of people think their ideas are fair, but the ideas of others are not. Everyone protests about possible solutions to funding things by saying “it’s NOT FAIR”. When governments and big polling companies like Gallup and Nielsen do surveys to ask people who should pay taxes and how much according to their current income and jobs, they are really looking for clues to what people might accept from the government.

I think those polls have been asking the wrong questions by not including all the players in the fairness scenario. They tend to ask people “Should people on high salaries, like company directors and medical specialists be asked to contribute more to funding the… (whatever system, eg. health, roads, communications, electricity supply, unemployment benefits), than people on low incomes, eg. cleaners, road labourers, laundry staff.”

I think they should be asking people what the balance should be among contributions by Them, Us and the government itself. Then the pollsters might see that many people, who answer that well-off people should not have to contribute too much more to taxes than they do already, will nominate that the GOVERNMENT should do more instead. What they’re saying is that they don’t understand where a country raises its revenue in order to pay for services for all of us. Personally, I’ve spoken to a lot of people over the years who say “the government should pay for better roads” and “the government should use the health money better than it does” or “the government should pay all the expenses for my grandma’s hip replacement because she’s been a good wife and housekeeper all these years”. People seem to think the government has a magical pile of money that keeps being topped up, no matter what public cause it is spent on; they don’t seem to realise that a government can only expect to collect a fixed amount of revenue from the citizens of the country every year and must borrow the rest on the open market when things are not balancing up in the short term. Then the government has to keep up services the next year AND pay off the loans at the same time- like some people take out a second housing loan for an investment property, but then have to find the money to keep paying off both loans even when they’re not getting rent from the investment.

So the idea of fairness being subjective doesn’t work in the real world of politics and government- it should be something that most people can agree on, or at least not grumble too much about, and it needs to apply to everyone and everything. If you think it’s not fair that your government only pays $X per week as unemployment benefits, you had better rethink your stance on not asking rich people to pay proportionally MORE in tax than poor people. They’re certainly not going to be able to raise all the extra from poorer people, as although there are far more of them, the poor are more likely to become unemployed and need the benefits paid to them instead, because the rich are feeling the pinch! The rich are going to resist mightily becoming unemployed themselves! But if they do become unemployed, most have investments which can pay them a “wage”- but the investment then starts to fall in value, which they’re not very happy about.

On the other hand, the leftists who are currently rather unpopular, think it is natural for the rich to pay heaps more tax, until their incomes are much closer to the poor. This used to happen in Sweden where the richest paid 98% of their raw income in tax! I’m not sure how it works there now- please comment!  I certainly think that the income of the highest paid person in a country should not be much more than about 7 times the lowest standard wage. If only there was a way for a government to enforce this- then they’d say it was a dictatorship, not a democracy- it’s all too hard!! If you ask most high salary earners in the current economic climate whether they deserve what they get (eg. the CEO of the Westpac Bank in Australia) they say of course they do as they are the ones who have attracted the big investors to their funds and they have developed systems for making sure everyone who uses their bank pays decent fees for the service. Many other people, including me and Will Hutton, say that NO ONE is worth 100s of times the salary of the lowest paid worker in their organisation. For instance, there is the Westpac CEO who earns around $10m per annum and her lowest paid worker, say a lower grade clerk with 2 years experience would earn $33 800. The CEO earns 296 times the salary of the clerk. The bank says their CEO is a great manager and earns her salary. I’m sure the clerk is good at her job, too. Is this fair? I don’t think so and I think something needs to be done about it. It’s case of extreme Them and Us and it’s just NOT FAIR!!

I really get on my soap box when people talk about paying for health care. Lately lots of people, whether journalists, doctors, members of the public or economists have been saying in horrified tones that “they’re going to start RATIONING in health care”.

Health Rationing Video

Maybe this sounds devastating to you as well! But come back to earth people- given the above model of the government collecting a fixed amount in taxes, then dividing the booty between different areas or portfolios, roads get a pile and health gets a pile. The pile is fairly limited, although with unexpected windfalls in other areas, a government can “top up” health from say- mining taxes. If you have a fixed amount and you have to estimate how much each citizen will use from the pile in an average year, you are RATIONING the health dollars.It has always happened and it always will- why are people getting so worked up NOW, when health spending is the highest it’s ever been? You tell me.

 

I’ll leave my rant on so-called rationing of healthcare to another post! Come on, get stuck into me!!

Day 12 NaBloPoMo: Wikileaks and life as we know it.

Today Spotrick and I missed out on our Social Media Adelaide Christmas Picnic to attend the local rally in support of Wikileaks on the steps of Parliament House, Adelaide. Spotrick took along is camera, so this is what it looked like:

There were around 300 people there in a very peaceful rally. Several Green politicians spoke, plus other representatives of various interests, such as the perennial Socialist Alliance. There were a few good slogans, eg. “Wikileaks and the Chamber of Secrets”, and the Quakers were there as usual with their wicker broom and placards promoting Peace and Free Speech.

Everyone agreed that Wikileaks is a good thing and Julian Assange, as a facilitator of open information, should not be hunted down and pilloried for any reason. The issue of sexual assault or other charges against him in Sweden seem an annoyance and nothing to do with Wikileaks the organisation. There is speculation about Swedish deals to allow the USA to extradite Assange to face charges of goodness knows what, but there are many possibilities about bringing charges of any sort against him- conspiracy? creating a diversion? trying to malign him in the eyes of the public? stopping him from speaking out because he’s locked up? He doesn’t generally speak much himself about anything, so it’s difficult to narrow down the motives that might exist.

We all agree that the accusations of Sarah Palin are the rantings of an underpowered intellect and that there ought to be a law preventing her from inciting intercultural conflict by calling for his capture or assassination like Osama bin Laden. Imagine if people said this about Bill Gates because he released a pile of information someone didn’t like? Sheesh!

Australia’s Labor Prime Minister [Labor is similar to Democrats in the USA], has made herself very unpopular with members of her own party by saying that Julian Assange has broken the law in leaking internationally sensitive information. However, it’s unclear whose laws and which particular laws may have been broken- none, we guess. Our new Attorney General has also put his foot in it by declaring that he IS NOT impartial about the correct administration of justice in our country after all! He wants the Federal Police to take 18 months out of their valuable public service time to hunt down crimes of which Julian Assange could be considered guilty- although he can’t think of any right this minute. I want a NEW NEW Attorney General- one who stays out of any particular dispute and only looks at the way in which justice is administered- not doling it out himself!

The business about Wikileaks releasing the list of sites in Australia that might be strategically important to the USA is a terrible Furphy- who doesn’t know where the trans-ocean cable comes ashore in Sydney? It’s pretty obvious to anyone except the blind and I’m sure someone would tell them if they asked nicely. But who cares if there is an open-cut bauxite mine in northern Australia? Is a terrorist going to blow it up the same way the miners blow it up every day? Huh?? Where’s the problem? Bauxite is the commonest substance mined from the earth’s crust and costs a small fortune to smelt, making rich profits for suppliers of electricity and virtually no one else! As for where Midazolam is manufactured, eg. a Fauldings laboratory in Victoria- it’s made all over the place- I’m sure the US could get plenty from other places to make Australians forget stuff they didn’t want them to remember if they really wanted to! We might be grateful to forget if it’s really that bad!

The business with Visa, PayPal, Mastercard etc is pretty smelly. We have let these monster private companies take over governance of the world’s monetary transactions. We should have kept a publicly operable back-up system so they didn’t grab the power inherent in the role. Silly humans- it actually worries me quite a bit now. We don’t want companies to hold onto OUR money instead of paying people they don’t like! Maybe it’s a good thing that these companies showed their hand, giving us a chance to get a reserve cash system in place for a real global emergency. How would it be if my bank decided it wouldn’t pay my phone company’s bill because that company was making a takeover bid for my bank?? Whose money is it then? Very dodgy state of affairs for the world.

When we had a scratch dinner with friends tonight it felt like the old student days- we sat there drinking wine (not me), eating and talking politics and ethics for hours!We are in a real quandary about how to get good government. We’ve just re-elected our Labor government by the slimmest of margins, against a Liberal Party [like Republicans, Conservatives] that appeared to have no policies of its own, except to reverse the policies changed during the old Labor regime. They have NOTHING new to offer and basically believe “user pays”. They want to cut down social services, cut taxes to the rich, make health as private as they can and make economic conditions favourable for big companies who give most of their profits to their CEOs. The Greens seem committed to doing something about Climate Change, but their other policies are non-existent or too simplistic to work in the current complex social environment- so we can’t have a parliament dominated by them. So who are we going to elect?

Anyone for yet another new political party in Australia? What will we call it- how about the Australian Democrats? Hmmm… now that sounds familiar, and NOT very promising.

Any ideas?

PS. What would our Aboriginal Australians say is our best national option? Anything new on that front?

Another dream, another toad…

I just awoke from this dream as Evangeline opened the front door, so some of it has been shocked into the subconscious!

The dream started somewhere I can’t remember, but the first bit I can remember is when I was getting into a single bed (rather like my cousin Beth’s bed when we were kids and I stayed with her parents). As I pulled the blankets up to settle down, there was a little twig-like thing on the edge, so I pulled it out and chucked it on the floor. Then some bloke came in to say goodnight (not my Uncle Alan, but a stranger) and was telling me about a slight “pest” problem they’d been having- a few mice and rats in the roof. Then he spotted the “twig” I’d tossed out and pounced on it, saying “Oh no- we must have a bird problem as well… that’s a little, shriveled bird foot!” Dead bird foot I wasn’t too alarmed as IRL our cats are always abandoning little birds’ feet about the yard.
So off I went to sleep, unconcerned. The next morning I was in the city with some other people working for some government office. We had to get some lunch and travel to some other site for a meeting, so one of them went off to get some take-away stuff for us to eat on the train. I ordered a hamburger and chips and a soft drink and this guy went off to get everyone’s order. When he came back he had got various hamburgers, chicken, sandwiches and chips, but handed me a barbecue chicken in a bag. I was a bit miffed, but took my bag onto the train and tried to settle down. However, a heap of people got on and crowded us out of our spot near a window- there were several small children, a few older ones and a few extra adults- the little kids just stomped on most of the food- Thanks to Plaid Ninja on Flickr for this icky object! a Macca’s burger went all splatto across the seat, which put me right off!
A while later I got settled elsewhere in the train and opened my chicken bag- BUT-inside covering the whole upper side of the nicely browned chicken was a huge floppy toad, looking quite slimy and stunned! My toad was a bit smoother Eeeergghhh!!! I slapped the bag shut as it moved a bit!
I went back to my friends sitting with the kids to show them, but when I got there, one of the toddlers had just got another, smaller, darker toad jump onto his front and everyone was trying to get it off him, while he shrieked! A man who seemed to be the same one as had been saying good night before, said he was the child’s father and that he had been receiving some of these animals in mailed packages for some weeks.
The scene moved then to a stairwell- maybe in a station and I was walking up- as I rounded a corner, a pale green thing wound around a steel brace- it looked rather like a snake! (How Freudian!!!). The pale green snake- but mine was larger.As it looked rather sluggish as well, I grabbed it behind the head and held on tight, taking it out into a corridor. This turned out to be the corridor of a laboratory building or university. I ran with the “snake” (it seemed to have some rudimentary dinosaur-looking pale green legs at times) into a lab with benches and yelled- “Someone get me a container for this thing!”. Everyone started to scatter and run away- I let go of the now writhing and jerking thing and it hurtled across benches and floor towards the windows. I yelled at everyone to get to the other side of the room and out the door- some hardy types (blokes in lab coats mostly), immediately went to have a closer look at the thing. Somehow I knew it was not particularly harmful or venomous and wasn’t panicked, although I didn’t want it to bite me anyway. A guy came along from another department and said it was the Pale Green Jungle Python from Ethiopia (??!!).
Without much ado, I was back with my colleagues from the train, going to our meeting. We got off the train onto a bus and set off in the rain; (it had been sunny before and overcast). We got off the bus at what seemed like the long boring stretch of Ayliffe’s Road, before it descends past the Shepherd’s Hill Reserve. There seemed to be nothing there except a tall thin Asian man with a briefcase standing beside the road.
Meanwhile it got quite dark, and we’re walking along the road- which now seemed to be in a fairly level suburb with lots of peak hour traffic, rain and traffic lights. As we rounded a corner on foot I noticed that a heap of large gravel was piled up with lots scattered across the lefthand turn lane. Then I looked out into the intersection and noticed that a car seemed to have fallen into a big sinkhole in the road! Thanks to wowservice on Flickr- my hole was much smaller! It was full of people- 8 of them in fact, and had filled with water up to road level! I looked them over and got out my mobile phone to call an ambulance and police- meanwhile one of the passengers stood up (it was a large convertible with top down, in the rain!), and started pressing 000 on her mobile as well. Other passengers didn’t seem able to move or get out so I moved in front of the car to direct traffic/make it stop or whatever, while a colleague attended to the passengers. Suddenly all the street lights and traffic lights went off and it was a bit hairy standing out there in front of the oncoming traffic! However, the cars still had their headlights and I figured my hands would look white in the lights and people would see me waving them about and not hit me!
As we waited for the ambulance and police to turn up, suddenly someone I had seen earlier in the dream in a shocking pink suit, turned up. She had been sent out by some government minister to personally investigate claims that the transport department was letting things go to the dogs, and here she was right on top of a supporting incident! We seemed to know who she was, so we grabbed her and started making her write down our sad tale about the accident, the road condition and the disorganised trains and buses we had been travelling on. Then the front door opened and I was awakened- no more dream!
What the?? Figure this one out!!