Your non-Party opinion please.

[Jane]

I wonder what peoples' considered thoughts are about the drug for cystic fibrosis which has been in my local news recently.  This drug costs 180.000GBP per year per patient and isn't available to NHS patients because of the extremely high costs.  The news story was about a 20 year old girl and the drug company has decided to donate the drug to 'named persons' (ie this girl) on 'compassionate' grounds as long as she needs it, but other CF sufferers still cannot have it via the NHS.

There is no cure for cystic fibrosis and this girl will eventually die from this foul illness tho the drug should extend her life somewhat.

If all NHS cf patients who could benefit were be prescribed this drug the costs would be immense - even 10 patients would cost the NHS 18 million pounds each year, and there are many many thousands of cystic fibrosis sufferers in the UK.

It's an ethical dilemma, complicated for me because a young lad of my family died from cf just a few years ago, and his loss is still very deeply felt.

My questions are:
Should such drugs be available on the NHS, given the impact such immense spending would have on resources available to other patients, and perhaps on treatments which cure or prevent painful illnesses which ruin lives?
Should those drugs be provided to some, parents who have children to support and raise for instance?  Young folk with their lives before them?  Older people who have paid into the NHS all their working lives?

[Jonksy]

This is certainly a dilemma Jane, what I find incredibly wrong is the price of drugs they say they have development and and testing costs but they pale into insignificance on the overall price of drugs and even after supposedly extensive testing they still do not always get it right as the thalidomide case proved. But back to your original question it would be good if people with that terrible disease could receive the drugs but at the present it is cost prohibitive and I suppose the NHS has to play the devils advocate and treat as many people as they can with other ailments which uses cheaper drugs and cures and have a known outcome, I certainly would not like to be the one who has to make that decisioned or to have a family member or friend with that terrible ailment.

[Sandman]

When I read this article in the week Fairy, my first reaction was to

think they must have made a mistake on the cost, and put an extra

zero on the end, then I thought, was it a way for the drug company

get media coverage to promote their drug, and to tug at the heart

strings of the public, I personally wouldn't like to be the one to make

a decision based on cost, I would give everyone the drugs that make

their life better, then when you look at it in the harsh reality of the NHS,

you know it cannot afford the massive cost, unless the drug companies

bring their prices down drastically, and spread their development cost

over much longer periods, to make drugs affordable for all.  

 

On Wednesday, 31 October 2012 17:48:12 UTC, Jane wrote:

[jar]

The millions that we know that are wasted by gvts and which we read about every other day would more than pay for these drugs providing that their prices are not rip off ones.
One of my pals young daughters has this dreadful disease and she is bright as a button even though she has to make regular visits to hospitals. To think she could be helped if I not go this gvt wastage makes my blood boil

[Affa]

 

My reaction was the same as Jonksy's ........ why are the costs so high?

Surely it would be more profitable if the company made the use more affordable.

Your figure says ten patients are given the drug costs £18ml pa.

If costs were a tenth what they are, then 2,000 patients at a cost of £36ml is good business.

 

But ah! there are savings too to be made ........... the suspension of current treatments are savings. Can it be that the same company supplies that alternative medication?

 

 

 

[Trueblue]

If we knew how long and how much it cost to develope this drug we'd all have a better idea, at the other end of the scale NICE refused to sanction a drug in England known to greatly delay dementia and it only cost 23p per day.

[jar]

Jonsky and tinman must be interested to know that TB

[Trueblue]

On Wednesday, 31 October 2012 23:40:55 UTC, jar wrote:

Jonsky and tinman must be interested to know that TB

 

 

The truth is Jar rationing has existed in the NHS since its inception though the thought crossed my mind had this been a gay decease mainly self inflicted and therefore totally preventable the lobby groups would have forced governments to fund expensive research and the drugs.

[Briar]

Jonksy,

firstly, thalidomide was a long time ago now, and it resulted in both
companies and authorities agreeing upon a lot more testing for
unexpected side effects before a product could be launched for
treating anything. A lot of the cost for R&D of new medicines are due
to different jurisdictions having different legal requirements for the
permission to supply the same medicine in their particuar country !
It would help reduce costs if the different national authorities
could see their way to a wee bit of standardization over this
aspect. Nothing bad on that scale has occurred since then!

Until we restructure our economies so that we supply medicines free to
those that need them, and fund the R&D out of the kindness of our
hearts, the companies doing it will expect, and be entitled to, a just
reward and profit for their effort. Even whether or not they were
state owned, this would still apply!

A lot of money and time could be saved, if studies that showed that a
particular new candidate substance for a medicine did NOT work, were
published: everyone is happy to publish their successes, but nobody
almost, ever published that a substance they were working on did not
have the effect they expected after all, or that it was just too
toxic. The result of this is that a lot of work on compounds that are
no use gets repeated by different research teams, wasting time and
effort that could be avoided, if they had only known what the others
had found out!

Several companies have provided life-saving medicines for rare
diseaases free or at token price - they do care about people, if they
did not they would be working on easier and more profitable things !
People seem sometimes over quick to criticize the pharma industry but
slow to appreciate acts of goodwill from them,

Not all countries respect the patent laws, and some have companies set
up ready to pirate any new expensive medicine by manufacturing the new
products at a lower price.

Some governments set the price allowed at what they are prepared to
pay, the companies then can decide whether to not supply it to those
countries or to accept being told what low price they have to accept.

You do not understand the costs of research and devlopment, for every
thousand compounds synthesized and screened, each costing tens of
thousands of £ $ € or whatevers, only 3 - 4 show enough interesting
characteristics to be followed up. For every product that finally
becomes approved for supply to treat a serious condition in people,
about 200 or even more have gone most of the way through all the
experimets on cell cultures, several species of animals, and human
volunteers, only to have to be discarded for reasons of insufficient
desired effects or serious side effects.

Jonksy, be thankful you live in a world and a time that enough people
are willing, like I was, to spend years of their lives working in
labs, which are quite dangerous places to work in, in order to save
other peoples' lives or make their suffering from their illnesses less
severe. There are plenty of eyes watching what we get up to these
days, that the chances of getting too rich quickly from developing a
new medicine are pretty low !

[jar]

I read a while back that it has been found safe and effective for anther unrelated disease. Sorry cant give you more detail but as you seem to know about the subject you might be able to access the item

[jar]

I was referring to the cheapness of the drug that helped those with dementia TB

[Gofam]

drug industry total racket

if we stopped health tourists etc and some vanity ops unless phsychologically necessary then maybe thered be enough fordrugs like this

[jar]

It's a mystery to me why our politicians have allowed us to be the worlds hospice and continue to do so . Those that are supposed to pay never do. No wonder the health service is struggling