A Shropshire man who suffers from a rare life-threatening disorder is battling against proposed new medical recommendations which could see vital funding for treatment scrapped.
Richard Mundy, of Wellington, suffers from pulmonary hypertension, an incurable condition that restricts the artery between the heart and the lungs and means there is not enough oxygen in his blood.
Just 45,000 people in the UK suffer from the condition which has symptoms including shortness of breath, dizziness, a tendency towards infection and an increased risk of heart attack.
Until now a relatively normal life has been made possible thanks to the provision of treatment and drugs. But under new proposals they could be removed.
Mr Mundy, 63, said that the publication this month of a set of preliminary recommendations made by the National Institute for Health & Clinical Excellence would mean that, if implemented, people newly diagnosed with Pulmonary Hypertension would have treatment options available to them curtailed.
Mr Mundy, who lives with his wife and son in Wellington and who campaigns for to raise awareness of the condition, said: “NICE were not looking at the drugs used in the treatment of Pulmonary Hypertension and asking if they work or are safe because they are all licensed for the treatment of this disease.
“The questions they asked is this - are the drugs cost effective and by this they mean is the benefit derived from the drugs worth paying for?”
As a regional spokesman for the charity Pulmonary Hypertension Association UK, he added: “The PHA-UK are mounting a challenge to these preliminary recommendations and we are trying to get as many people as humanly possible to sign an online petition in support of our campaign.”
People can find out more about the petition and view a series of films on a cross section of patients who are on the treatments that NICE would deny future patients by logging on to http://www.pha-uk.com/petition_nice_introduction.asp
By Ben Bentley
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5 Comments
Maybe in the ideal world,our county overpaid councillors will take a pay cut and lower their pay, so that money saved could be put to help out for treatment.
But unfortunatly,i was being stupid to think of such thing would happen.
Yes the drugs are expensive. However they are effective in helping to slow the progression of Pulmonary HYpertension. Revatio does not work for everyone with PH. Even when it does the effectiveness wears off. How do I know? I take 80mg three times a day (the max). There are several pathways believed to be involved with develop of PH. Revatio just targets the nitrous oxide path.
Research is vital in order to find a cure. Researcher believe a cure is just around the bend. Cutting off drug funding will slow down the process of finding a cure.
Would you cut off the funding for AIDS or dialysis for ESRD. What has our world come to when we prey on the sick or weak of society? You can judge a county’s moral obligation by how they treat children, elderly and the sick or disabled. You cut the drug funding for PH and may God have mercy on your soul.
Just like in the United States if the Congress pension was Social Security–we would have a fix tomorrow. Please don’t send the message to the world that this behavior is OK.
Thank you for listenting.
Cindy Pickles, BSN, RN and PH Patient
Lewisville, Nc 27023
what a shame people cannot have the proper medications for their lives.
does anyone care???
I do.
I live in the U.S. but have friends in the UK. Please do not take away Flolan. I have Pulmonary Arterial Hypertension and need both Flolan and Revatio to live. It is a combination therapy. If it were not for Flolan, I would be dead today. I couldn’t survive on Revatio alone. The Revatio keeps the Flolan at a lower dose and allows for fewer side effects while treating both aspects of the disease process.
I have just learned about cutting funding for medicine for pulmonary hypertension in the UK. This is such a shame. I have had ph for years, and without Flolan, and now Ventavis, I would be dead. These medications literally saved my life, along with the power of prayer. I hope someone will not allow this to happen. People with PH after they get help with medicines can lead a normal, happy life. Please reconsider.
Tricia Shields