Graeme Warner believes the English medicines regulatory body may be about to sentence him to death. For eight years he has been kept alive, despite suffering from a rare lung disorder, by the drug regarded by specialists in the field as the gold standard for his condition.

More than alive - he has been able to enjoy a second marriage, regular holidays in Spain and has continued to serve the public in his work, in defiance of an illness which until recently doctors had little answer for.

Pulmonary Hypertension affects fewer than one in a million people, but for those it does affect, it is life-threatening. A narrowing of blood vessels in the lungs causes high blood pressure putting abnormal strain on the heart. The right ventricle of the heart can become swollen, leading to eventual heart failure. It is a degenerative condition, because the vessels gradually stiffen and constrict, raising blood pressure over time.

It is often diagnosed late and for those in whom the disease is advanced, the treatment options are limited and costly. The National Institute for Health and Clinical Excellence (Nice) is currently consulting on proposals to withdraw the most expensive treatments from use in the NHS in England and Wales, with many fearing that if the decision is confirmed, Scottish agencies may well follow suit.

Previously a solicitor, in 1992 Warner had been appointed as a sheriff in Aberdeen but had become aware that he was regularly short of breath. He put it down to the ageing process, even though he was only in his early forties and had played rugby until recently.

However, he had been doing the job for six weeks when he was forced to sit down on the pavement in the pouring rain one night while making his way uphill towards home.

He realised he needed medical help. But he was stunned when - after being pressed for an answer - his cardiac specialist told him he could expect to be dead in less than six months. "I had thought - high blood pressure in my lungs - that doesn't sound too desperate'. But I had two youngish kids."

As he survived that grim prognosis, and then another six months, medicine moved on, although his condition deteriorated. In 1997, he was forced to stop working and put on a new drug to manage his condition. This worked, but the drug was delivered under the skin and left him with continuous extreme pain and swelling. In 2000, the Scottish Pulmonary Vascular Unit was set up in Glasgow, to be one of seven UK centres of excellence in Pulmonary Hypertension.

Warner was put onto a drug called Flolan, one of a class of drugs known as Prostacyclins. It is delivered by a pump at his waist, which connects to a tube in his neck, and dispenses a single drop of Flolan once every 50 seconds to normalise his blood pressure.

It is so critical that he becomes weak after less than half an hour if the pump stops, and he would die without it, he says.

The Nice recommendation is that treatment should begin with Sildenafil - more commonly known by the trade name Viagra - which is useful in many cases, and progress through more expensive treatments if this and subsequent treatments are not working.

However, the Prostacyclins would not be recommended for use.

Patients like Warner who are already on treatments which are to be withdrawn should continue to get them, if doctors think it is appropriate, Nice says.

He is unconvinced. "I don't know if that is set in stone. But even if they do say people who are getting it can continue, I think this is a very poor choice.

"As a judge I absolutely understand about impartiality and that I have a particular point of view. And I understand all about balancing priorities, but this is wrong. The proposal is that future generations will be told, We know exactly what's wrong with you and we know how to fix it, but we are not going to, so you will die'. It's immoral."

Professor Andrew Peacock, director of the Scottish Pulmonary Vascular Unit, is as dismayed as Warner. He heads a team which has gradually been building expertise in this condition for eight years now. It is an expertise which is admired around the world, but he says Nice has ignored it.

"When I talk to my European and American colleagues about this, they are absolutely amazed." Prostacyclin is used to treat the sickest of the sick, he argues. "We are going to have to say to people, You are just going to have palliative care and you will die'."

Many fear the specialist centres, including the Scottish unit, may be threatened if the gold standard' treatments are withdrawn from the NHS. Peacock says: "It doesn't say in the Nice guidelines that the specialist centres should be abolished or broken up. But it doesn't give the opposite message, that really these drugs should only be prescribed by the specialist centres."

In other countries, doctors are free to prescribe any medicine licensed to treat the condition.

When a condition is so rare, clinical expertise becomes more vital and it is harder for a body such as Nice to make proper decisions. There are very limited numbers of patients, so clinical trials can't be done to determine how effective treatments are. As a result, Peacock says: "The process is based on insufficient evidence at present to come to the conclusions they have." The Pulmonary Hyptertension Association, which campaigns on behalf of patients, has been lobbying in an effort to get Nice to reverse its draft decision.

Spokesman Paul Pennington says that Viagra is a fine treatment, but only for some patients. "If it doesn't work, they say we'll try you on another oral therapy," he says. "But after that, it's book your own funeral. Or hope for an upturn in road accidents to give us enough organs for heart and lung transplants." He warns that if Nice'S decision is confirmed, Scotland should avoid following suit. "We are the envy of the world and they've thrown that down the drain."

There is one chink of hope, thanks to a development last week. An Israeli company's licence application for the use of a generic version of Prostacyclin was granted last week by the US food and drug administration. This is expected to be much cheaper than Flolan, made by pharmaceuticals giant GSK.

Pennington believes this is an example of poor research and short-sightedness. A spokeswoman for Nice said it would not influence their consultation. "We can only look at what is currently on the market. We would need to be informed that a European licence is imminent or it would have had to be granted already."

Nice argues that there is a lack of evidence for the cost-effectiveness of prostacyclins. She stressed that no final decision had yet been taken. "We consult so that people with interest can comment."

Warner is still hoping that they will listen to the voices of those whose quality of life, and their life itself, can be preserved by a drop of a drug every 50 seconds. "This has transformed my life," he says. "And I'm absolutely not alone in that."