Can we fight the PCT?

[ellie1997]

My 57 year old Aunt has incurable lung cancer. She is well aware that she doesnt have a great deal of time left. Her consultant has recommended a drug called Tarceva, which is extremely effective with non small cell lung cancer. It wont cure her, but it will prolong the time she has left and give her a better quality of life.

Staffordshire Primary Care Trust has refused to prescribe the drug. Tarceva is prescribed through other PCT's and throughout scotland. We have appealed once with the aid of the Roy Castle Foundation, Local MP and the consultant but the appeal has failed.

To be honest time isnt on our side. We have contacted the local newspapers who have supported her wonderfully, but now Im at a loss as to what I can do.

 

Her point (and a very good one I think!) is that at 57 she has worked all her life and paid into the NHS, she isnt going to be alive to claim a pension so why will they not give her the drug that will help her? At £50 a day there is only so long we can fund this treatment ourselves.

 

Can anyone help?

Jane

x

[Rich44]

I appreciate you dont have much time but it might be worth an email/letter to Tony Blair and Patricia Hewitt one of them may try to intervene on your behalf, after all if they can intervene on behalf of 350 children who lost their world cup tickets they can bloomin well help someone with a serious problem.

 

Hope this helps sorry there's nothing else constructive I can think of to offer

[JonCris]

My 57 year old Aunt has incurable lung cancer. She is well aware that she doesnt have a great deal of time left. Her consultant has recommended a drug called Tarceva, which is extremely effective with non small cell lung cancer. It wont cure her, but it will prolong the time she has left and give her a better quality of life.

Staffordshire Primary Care Trust has refused to prescribe the drug. Tarceva is prescribed through other PCT's and throughout scotland. We have appealed once with the aid of the Roy Castle Foundation, Local MP and the consultant but the appeal has failed.

To be honest time isnt on our side. We have contacted the local newspapers who have supported her wonderfully, but now Im at a loss as to what I can do.

 

Her point (and a very good one I think!) is that at 57 she has worked all her life and paid into the NHS, she isnt going to be alive to claim a pension so why will they not give her the drug that will help her? At £50 a day there is only so long we can fund this treatment ourselves.

 

Can anyone help?

Jane

x

You need to know the reason for their refusal & if it's cost I think in view of the recent successful legal action regarding breast cancer drugs cost cannot be a reason for refusal. She needs to urgently obtain expert legal representation who may be able to seek an emergency injunction requiring the PCT to supply the drug FOC until a later hearing when the arguments can be heard in more detail.

 

These b***ards sitting in their cosy offices being paid large sums from the public purse deciding who lives & who dies make me sick. A plague on all their houses

[Nick]

The net cost for these tablets is one thousand, three hundred, twenty four pounds and 14p for 30 x 100mg and for 30 x 150mg 1631.53 pounds. The drug companies ought to be ashamed of themselves ( I apologise for the numbers, the pound sign doesn't work on my keyboard

[ellie1997]

We have sent letters and petitioned, all to no avail. She is now paying for these tablets herself....at a cost of £60 a day.

Because the cancer makes her so ill she has been known to vomit back the tablet.

Quite how long she can continue to pay we dont know.

thanks for the support guys

Jane

x

[lizchspman]

The net cost for these tablets is one thousand, three hundred, twenty four pounds and 14p for 30 x 100mg and for 30 x 150mg 1631.53 pounds. The drug companies ought to be ashamed of themselves ( I apologise for the numbers, the pound sign doesn't work on my keyboard

 

First of all - I have every sympathy with this lady and I really hope she manages to get whatever medication will be best for her.

 

BUT I do not think the drug companies have anything to be ashamed of. They start out researching hundreds of thousands of possible medications all of which costs a lot of money. Over the course of 20 years or so these become thinned down to maybe 2 or 3 which might have the desired effect without doing more harm than good. During the next 10 years then maybe if they are very lucky one will prove to be a valid and useful medication - can you imagine what it has cost to get to this point? And they have only a short time until other drug companies can produce and sell a look-alike so all the costs have to be recouped in this period otherwise they will go out of business and not be able to produce the next wonder drug. and, no, I do not work for a drug company I work for the NHS.

[JonCris]

Sorry but you make the drug companies sound like saints or you don't much care that the very same drug companies are presently under investigation for massively overcharging the NHS?

[ellie1997]

You work for the NHS? So tell me, how does it feel to watch patients die because the NHS and PCT's cant get hold of the drugs these people need because of over pricing?

 

In 2004, the company enjoyed an annual turnover of £50.7 million

 

Thats a quote from a job ad for an unnamed pharmaceutical company in London. £50.7 million a year? My heart bleeds for them.

[JonCris]

PCT's constantly refuse drugs on the basis of cost which is contrary to law & they know it. Its often not until the patient gets legal representation that they get anywhere.

Even then, as we have seen, they often have to go to court. The cost to the PCT's of fighting these claims must be vastly more than the cost of the actual drugs

[ellie1997]

I just wanted to update this thread.

 

My Aunt passed away on January 3rd, peacefully. Buying these drugs herself gave her 6 months of life that she lived to the full. the PCT never did agree to fund the treatment.

 

My father, Aunts brother, is now also fighting terminal lung cancer. Tarceva hasnt yet been mentioned as a treatment, but Im preparing for the fact that it probably will be, and we will have to start the fight all over again.

Jane

[callumsgran]

Bless you, thanks for updating us and i'm so sorry to hear your very sad news.

Your aunt was obviously a very brave lady and its disgusting that the PCT let her down, like you say she hasnt lived to draw her pension so should have got something back!

I'm sorry we were not able to do anymore to help her.

Would this drug be any good for your dad? If so start fighting now!

Big hugs to you and your dad:)

[ellie1997]

Thanks Cillit. Im not sure what will happen with Dad at the moment, he did start chemotherapy after xmas, and was ironically having treatment the morning Aunt died. Unfortunately he contracted a serious infection just after treatment which nearly killed him. The consultant said that the chemo would probably only offer him an extra few months anyway, so this in mind Dad decided to stop all treatment.

 

Since he stopped the treatment he is incredibly well, so well in fact its hard to believe that before xmas they said 6 -8 months. He is driving, pottering around the garden etc.

 

We have another consultant appointment in 2 months time and Im expecting him to suggest Tarceva, the consultant in question was also my Aunts consultant and he is a big advocate of the drug having seen the effects on many of his patients.

 

Im still actively working to get the PCT to allow this drug, it could change so many lives. The drug has been approved by the EU for use in Europe since september 2005, and indeed if you lived in scotland you could get this drug on prescription. Meanwhile, NICE are putting together appraisals for the use of the drug.

 

Its all red tape, and while they are playing about with it people are dying.

Jane

x

[callumsgran]

(Its all red tape, and while they are playing about with it people are dying.)

Exactly! This shouldnt be allowed to happen, keep up the fight my dear and good luck to you and your dad.

He sounds like a breath of fresh air, bless him!

Keep us postedwith any news?

[needrevenge]

My Aunt passed away on January 3rd, peacefully.

 

I'm so sorry to hear this news - please make sure the correct person who decided not to prescribe these drugs is made fully aware of what she had to go through in her last months - THIS IS AN ABSOLUTE BLOODY DISGRACE.

[Clare_L]

Hi

 

I was saddened to read this post, it just does not make sense. Why find a cure or a drug to prolong and give a better quality of life if its only for the rich?

 

I have sent you a pm.

 

Hugs and good luck with your fight.

 

Clare