Re: PAH Treatment may be withdrawn by NHS in UK

[Guest guest]

Where did you find this Bruce? Have you got a link?>> I'm still mostly not back yet but had to post this article. Lung> patients 'condemned to death as NHS withdraws their too expensive drugs'> Last updated at 14:22pm on 25.03.08> Hundreds of patients with a rare lung disease will be sentenced to death> by plans to stop doctors prescribing a range of drugs on the NHS, it was> claimed last night.> > Campaigners have condemned proposals by the National Institute for> Health and Clinical Excellence to withdraw the drugs because they are> too expensive.> > The condition, pulmonary hypertension, affects an estimated 4,000 people> in the UK.> > Only a quarter of these need the most expensive level of treatment.> > Scroll down for more...> [ Baker with her son Bobby]> Sufferer Baker with her son Bobby, aged five> > > > Yet the plans by NICE, the Government's drug rationing body, mean no> life-extending therapies will be available to new patients because the> cost of the most expensive exceeds its threshold of £30,000 per head.> > Only the cheapest drug used to combat the condition will remain> available for patients.> > The impotence drug Viagra is valuable in combating pulmonary> hypertension's symptoms of breathlessness but sufferers say it will not> prevent the heart failure the disease can induce.> > Lung specialists currently combine it with inhaled or infused drugs such> as prostacyclins for the most seriously affected, which can add> £40,000 a year to the £12,000 cost.> > Another group of drugs, endothelin receptor antagonists, are also under> threat.> > The cost of the most expensive treatments is on a par with approved HIV> treatments or keeping one criminal in prison for a year.> > The final decision, to be taken in July, will apply to England but> doctors believe Scotland will follow suit.> > Patients with pulmonary hypertension are usually diagnosed in their 40s> and 50s and the time from diagnosis to death is only 30 months without> effective treatment.> > The disease causes blood pressure in the pulmonary artery to rise. Those> who go downhill need hospital care - with a lung transplant the only> other option.> > Professor Peacock, one of the world's leading experts on the> condition at the Western Infirmary, Glasgow, said: "One of the drugs we> routinely use for the very sickest of the sick patients, prostacyclin,> we're not going to be able to use at all.> > "We're going to have to say to people, 'Sorry, no treatment. You're just> going to have to have palliative care and you're going to die> basically'."> > Baker, 25, a mother, from Ashby de la Zouch in Leicestershire, was> diagnosed with pulmonary hypertension just over a year ago.> > "This medication has given me my life back," she said. "I have to take> the drug via a small pump 24 hours a day. I still get tired and have to> limit what I do, but I have the confidence to do normal everyday things> that just weren't possible last year."> > As an existing patient, Mrs Baker will continue to get the expensive> drugs prescribed on the NHS.> > But she said: "I think it's outrageous that people with pulmonary> hypertension in future might be denied the treatment."> > NICE said its appraisal recommendations are preliminary and "may change> after consultation".>

[Guest guest]

http://www.thisislondon.co.uk/news/article-23463446-details/Lung%20patients%20'condemned%20to%20death%20as%20NHS%20withdraws%20their%20too%20expensive%20drugs'/article.do --- In Breathe-Support , "Zena" wrote:>> Where did you find this Bruce? Have you got a link?> > >> > I'm still mostly not back yet but had to post this article. Lung> > patients 'condemned to death as NHS withdraws their too expensive> drugs'> > Last updated at 14:22pm on 25.03.08> > Hundreds of patients with a rare lung disease will be sentenced to> death> > by plans to stop doctors prescribing a range of drugs on the NHS, it> was> > claimed last night.> >> > Campaigners have condemned proposals by the National Institute for> > Health and Clinical Excellence to withdraw the drugs because they are> > too expensive.> >> > The condition, pulmonary hypertension, affects an estimated 4,000> people> > in the UK.> >> > Only a quarter of these need the most expensive level of treatment.> >> > Scroll down for more...> > [ Baker with her son Bobby]> > Sufferer Baker with her son Bobby, aged five> >> >> >> > Yet the plans by NICE, the Government's drug rationing body, mean no> > life-extending therapies will be available to new patients because the> > cost of the most expensive exceeds its threshold of £30,000 per> head.> >> > Only the cheapest drug used to combat the condition will remain> > available for patients.> >> > The impotence drug Viagra is valuable in combating pulmonary> > hypertension's symptoms of breathlessness but sufferers say it will> not> > prevent the heart failure the disease can induce.> >> > Lung specialists currently combine it with inhaled or infused drugs> such> > as prostacyclins for the most seriously affected, which can add> > £40,000 a year to the £12,000 cost.> >> > Another group of drugs, endothelin receptor antagonists, are also> under> > threat.> >> > The cost of the most expensive treatments is on a par with approved> HIV> > treatments or keeping one criminal in prison for a year.> >> > The final decision, to be taken in July, will apply to England but> > doctors believe Scotland will follow suit.> >> > Patients with pulmonary hypertension are usually diagnosed in their> 40s> > and 50s and the time from diagnosis to death is only 30 months without> > effective treatment.> >> > The disease causes blood pressure in the pulmonary artery to rise.> Those> > who go downhill need hospital care - with a lung transplant the only> > other option.> >> > Professor Peacock, one of the world's leading experts on the> > condition at the Western Infirmary, Glasgow, said: "One of the drugs> we> > routinely use for the very sickest of the sick patients, prostacyclin,> > we're not going to be able to use at all.> >> > "We're going to have to say to people, 'Sorry, no treatment. You're> just> > going to have to have palliative care and you're going to die> > basically'."> >> > Baker, 25, a mother, from Ashby de la Zouch in Leicestershire,> was> > diagnosed with pulmonary hypertension just over a year ago.> >> > "This medication has given me my life back," she said. "I have to take> > the drug via a small pump 24 hours a day. I still get tired and have> to> > limit what I do, but I have the confidence to do normal everyday> things> > that just weren't possible last year."> >> > As an existing patient, Mrs Baker will continue to get the expensive> > drugs prescribed on the NHS.> >> > But she said: "I think it's outrageous that people with pulmonary> > hypertension in future might be denied the treatment."> >> > NICE said its appraisal recommendations are preliminary and "may> change> > after consultation".> >>

[Guest guest]

Hi zena:I just googled this phraseNHS withdraws their too expensive drugshope it helpsBRETTWhere did you find this Bruce? Have you got a link?>> I'm still mostly not back yet but had to post this article. Lung> patients 'condemned to death as NHS withdraws their too expensive drugs'> Last updated at 14:22pm on 25.03.08> Hundreds of patients with a rare lung disease will be sentenced to death> by plans to stop doctors prescribing a range of drugs on the NHS, it was> claimed last night.> > Campaigners have condemned proposals by the National Institute for> Health and Clinical Excellence to withdraw the drugs because they are> too expensive.> > The condition, pulmonary hypertension, affects an estimated 4,000 people> in the UK.> > Only a quarter of these need the most expensive level of treatment.> > Scroll down for more...> [ Baker with her son Bobby]> Sufferer Baker with her son Bobby, aged five> > > > Yet the plans by NICE, the Government's drug rationing body, mean no> life-extending therapies will be available to new patients because the> cost of the most expensive exceeds its threshold of £30,000 per head.> > Only the cheapest drug used to combat the condition will remain> available for patients.> > The impotence drug Viagra is valuable in combating pulmonary> hypertension's symptoms of breathlessness but sufferers say it will not> prevent the heart failure the disease can induce.> > Lung specialists currently combine it with inhaled or infused drugs such> as prostacyclins for the most seriously affected, which can add> £40,000 a year to the £12,000 cost.> > Another group of drugs, endothelin receptor antagonists, are also under> threat.> > The cost of the most expensive treatments is on a par with approved HIV> treatments or keeping one criminal in prison for a year.> > The final decision, to be taken in July, will apply to England but> doctors believe Scotland will follow suit.> > Patients with pulmonary hypertension are usually diagnosed in their 40s> and 50s and the time from diagnosis to death is only 30 months without> effective treatment.> > The disease causes blood pressure in the pulmonary artery to rise. Those> who go downhill need hospital care - with a lung transplant the only> other option.> > Professor Peacock, one of the world's leading experts on the> condition at the Western Infirmary, Glasgow, said: "One of the drugs we> routinely use for the very sickest of the sick patients, prostacyclin,> we're not going to be able to use at all.> > "We're going to have to say to people, 'Sorry, no treatment. You're just> going to have to have palliative care and you're going to die> basically'."> > Baker, 25, a mother, from Ashby de la Zouch in Leicestershire, was> diagnosed with pulmonary hypertension just over a year ago.> > "This medication has given me my life back," she said. "I have to take> the drug via a small pump 24 hours a day. I still get tired and have to> limit what I do, but I have the confidence to do normal everyday things> that just weren't possible last year."> > As an existing patient, Mrs Baker will continue to get the expensive> drugs prescribed on the NHS.> > But she said: "I think it's outrageous that people with pulmonary> hypertension in future might be denied the treatment."> > NICE said its appraisal recommendations are preliminary and "may change> after consultation".> brett bowserbrett@...

[Guest guest]

zena

yesterday's daily mail.

> >

> > I'm still mostly not back yet but had to post this article. Lung

> > patients 'condemned to death as NHS withdraws their too expensive

> drugs'

> > Last updated at 14:22pm on 25.03.08

> > Hundreds of patients with a rare lung disease will be sentenced to

> death

> > by plans to stop doctors prescribing a range of drugs on the NHS,

it

> was

> > claimed last night.

> >

> > Campaigners have condemned proposals by the National Institute for

> > Health and Clinical Excellence to withdraw the drugs because they

are

> > too expensive.

> >

> > The condition, pulmonary hypertension, affects an estimated 4,000

> people

> > in the UK.

> >

> > Only a quarter of these need the most expensive level of

treatment.

> >

> > Scroll down for more...

> > [ Baker with her son Bobby]

> > Sufferer Baker with her son Bobby, aged five

> >

> >

> >

> > Yet the plans by NICE, the Government's drug rationing body, mean

no

> > life-extending therapies will be available to new patients

because the

> > cost of the most expensive exceeds its threshold of £30,000 per

> head.

> >

> > Only the cheapest drug used to combat the condition will remain

> > available for patients.

> >

> > The impotence drug Viagra is valuable in combating pulmonary

> > hypertension's symptoms of breathlessness but sufferers say it

will

> not

> > prevent the heart failure the disease can induce.

> >

> > Lung specialists currently combine it with inhaled or infused

drugs

> such

> > as prostacyclins for the most seriously affected, which can add

> > £40,000 a year to the £12,000 cost.

> >

> > Another group of drugs, endothelin receptor antagonists, are also

> under

> > threat.

> >

> > The cost of the most expensive treatments is on a par with

approved

> HIV

> > treatments or keeping one criminal in prison for a year.

> >

> > The final decision, to be taken in July, will apply to England but

> > doctors believe Scotland will follow suit.

> >

> > Patients with pulmonary hypertension are usually diagnosed in

their

> 40s

> > and 50s and the time from diagnosis to death is only 30 months

without

> > effective treatment.

> >

> > The disease causes blood pressure in the pulmonary artery to rise.

> Those

> > who go downhill need hospital care - with a lung transplant the

only

> > other option.

> >

> > Professor Peacock, one of the world's leading experts on

the

> > condition at the Western Infirmary, Glasgow, said: " One of the

drugs

> we

> > routinely use for the very sickest of the sick patients,

prostacyclin,

> > we're not going to be able to use at all.

> >

> > " We're going to have to say to people, 'Sorry, no treatment.

You're

> just

> > going to have to have palliative care and you're going to die

> > basically'. "

> >

> > Baker, 25, a mother, from Ashby de la Zouch in

Leicestershire,

> was

> > diagnosed with pulmonary hypertension just over a year ago.

> >

> > " This medication has given me my life back, " she said. " I have to

take

> > the drug via a small pump 24 hours a day. I still get tired and

have

> to

> > limit what I do, but I have the confidence to do normal everyday

> things

> > that just weren't possible last year. "

> >

> > As an existing patient, Mrs Baker will continue to get the

expensive

> > drugs prescribed on the NHS.

> >

> > But she said: " I think it's outrageous that people with pulmonary

> > hypertension in future might be denied the treatment. "

> >

> > NICE said its appraisal recommendations are preliminary and " may

> change

> > after consultation " .

> >

>

[Guest guest]

Bruce...what does "not back yet" mean??? Are you down in bed? Are you too tired to post?

Are you still fussin' with the new car?

Are you ok????

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

PAH Treatment may be withdrawn by NHS in UK

I'm still mostly not back yet but had to post this article.

Lung patients 'condemned to death as NHS withdraws their too expensive drugs' Last updated at 14:22pm on 25.03.08

Hundreds of patients with a rare lung disease will be sentenced to death by plans to stop doctors prescribing a range of drugs on the NHS, it was claimed last night.

Campaigners have condemned proposals by the National Institute for Health and Clinical Excellence to withdraw the drugs because they are too expensive.

The condition, pulmonary hypertension, affects an estimated 4,000 people in the UK.

Only a quarter of these need the most expensive level of treatment.

Scroll down for more...

Sufferer Baker with her son Bobby, aged five

Yet the plans by NICE, the Government's drug rationing body, mean no life-extending therapies will be available to new patients because the cost of the most expensive exceeds its threshold of £30,000 per head.

Only the cheapest drug used to combat the condition will remain available for patients.

The impotence drug Viagra is valuable in combating pulmonary hypertension's symptoms of breathlessness but sufferers say it will not prevent the heart failure the disease can induce.

Lung specialists currently combine it with inhaled or infused drugs such as prostacyclins for the most seriously affected, which can add £40,000 a year to the £12,000 cost.

Another group of drugs, endothelin receptor antagonists, are also under threat.

The cost of the most expensive treatments is on a par with approved HIV treatments or keeping one criminal in prison for a year.

The final decision, to be taken in July, will apply to England but doctors believe Scotland will follow suit.

Patients with pulmonary hypertension are usually diagnosed in their 40s and 50s and the time from diagnosis to death is only 30 months without effective treatment.

The disease causes blood pressure in the pulmonary artery to rise. Those who go downhill need hospital care - with a lung transplant the only other option.

Professor Peacock, one of the world's leading experts on the condition at the Western Infirmary, Glasgow, said: "One of the drugs we routinely use for the very sickest of the sick patients, prostacyclin, we're not going to be able to use at all.

"We're going to have to say to people, 'Sorry, no treatment. You're just going to have to have palliative care and you're going to die basically'."

Baker, 25, a mother, from Ashby de la Zouch in Leicestershire, was diagnosed with pulmonary hypertension just over a year ago.

"This medication has given me my life back," she said. "I have to take the drug via a small pump 24 hours a day. I still get tired and have to limit what I do, but I have the confidence to do normal everyday things that just weren't possible last year."

As an existing patient, Mrs Baker will continue to get the expensive drugs prescribed on the NHS.

But she said: "I think it's outrageous that people with pulmonary hypertension in future might be denied the treatment."

NICE said its appraisal recommendations are preliminary and "may change after consultation".

[Guest guest]

Bruce,

Thanks so much for posting this. As you know, my Flolan treatment for PAH is costing $100,000 a year. Of course, insurance companies do not like laying out that kind of money. Washington is filled by lobbyists with an agenda to create this same situation in our country as we see happening in the UK. God help us all.

Do you have the link for this article. I wanted to send it to my doctor.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> I'm still mostly not back yet but had to post this article. Lung> patients 'condemned to death as NHS withdraws their too expensive drugs'> Last updated at 14:22pm on 25.03.08> Hundreds of patients with a rare lung disease will be sentenced to death> by plans to stop doctors prescribing a range of drugs on the NHS, it was> claimed last night.> > Campaigners have condemned proposals by the National Institute for> Health and Clinical Excellence to withdraw the drugs because they are> too expensive.> > The condition, pulmonary hypertension, affects an estimated 4,000 people> in the UK.> > Only a quarter of these need the most expensive level of treatment.> > Scroll down for more...> [ Baker with her son Bobby]> Sufferer Baker with her son Bobby, aged five> > > > Yet the plans by NICE, the Government's drug rationing body, mean no> life-extending therapies will be available to new patients because the> cost of the most expensive exceeds its threshold of £30,000 per head.> > Only the cheapest drug used to combat the condition will remain> available for patients.> > The impotence drug Viagra is valuable in combating pulmonary> hypertension's symptoms of breathlessness but sufferers say it will not> prevent the heart failure the disease can induce.> > Lung specialists currently combine it with inhaled or infused drugs such> as prostacyclins for the most seriously affected, which can add> £40,000 a year to the £12,000 cost.> > Another group of drugs, endothelin receptor antagonists, are also under> threat.> > The cost of the most expensive treatments is on a par with approved HIV> treatments or keeping one criminal in prison for a year.> > The final decision, to be taken in July, will apply to England but> doctors believe Scotland will follow suit.> > Patients with pulmonary hypertension are usually diagnosed in their 40s> and 50s and the time from diagnosis to death is only 30 months without> effective treatment.> > The disease causes blood pressure in the pulmonary artery to rise. Those> who go downhill need hospital care - with a lung transplant the only> other option.> > Professor Peacock, one of the world's leading experts on the> condition at the Western Infirmary, Glasgow, said: "One of the drugs we> routinely use for the very sickest of the sick patients, prostacyclin,> we're not going to be able to use at all.> > "We're going to have to say to people, 'Sorry, no treatment. You're just> going to have to have palliative care and you're going to die> basically'."> > Baker, 25, a mother, from Ashby de la Zouch in Leicestershire, was> diagnosed with pulmonary hypertension just over a year ago.> > "This medication has given me my life back," she said. "I have to take> the drug via a small pump 24 hours a day. I still get tired and have to> limit what I do, but I have the confidence to do normal everyday things> that just weren't possible last year."> > As an existing patient, Mrs Baker will continue to get the expensive> drugs prescribed on the NHS.> > But she said: "I think it's outrageous that people with pulmonary> hypertension in future might be denied the treatment."> > NICE said its appraisal recommendations are preliminary and "may change> after consultation".>