Heart and lung disease patients in the North East can now receive a new treatment

New treatment option available in the North East for the management of a rare life-limiting heart and lung disease

Fred Purvis from Monkseaton who suffers from a rare heart condition
Fred Purvis from Monkseaton who suffers from a rare heart condition

Rare heart and lung disease patients in the North East can now benefit from a new treatment for the long-term management of their illness.

A new drug called Opsumit, also known as Macitentan, is available for adults in England with moderate to severe pulmonary arterial hypertension (PAH).

PAH is a progressive, severe condition, caused by the narrowing or tightening of the blood vessels, which connect the right side of the heart to the lungs. It is estimated that approximately 3,000 people are living with the disease in England with thousands more undiagnosed.

Newcastle’s Freeman Hospital is one of only six centres around the country to specialise in treating patients with the life-limiting illness.

Paul Corris, a professor of thoracic medicine at Newcastle Hospitals NHS Foundation Trust said: “Before special targeted therapies patient survival was less than two to three years from diagnosis, but happily new treatments have been developed over the last 10 years such that prognosis is much improved for the majority of patients. However, there are still unmet health needs for our patients despite these advancements.

“Macitentan is a new special form of therapy called an endothelin antagonist that has just been approved for use in the UK. It is a development from a previous drug of the same class, and currently we cannot be sure that it will be better than the existing drug.

“We do know, however, that the new drug Macitentan has been investigated in a most thorough and robust manner that is superior to the trials which led to licensing of the previous product and that combined morbidity and mortality end points were superior to placebo. We are looking forward to studying the benefits of this therapy in clinical practice.”

The narrowing of blood vessels caused by PAH reduces the available oxygen in the body and leads to symptoms such as breathlessness, fatigue, weakness and chest pain, which can significantly impact on a patient’s quality of life.

Although it remains a progressive and ultimately fatal disease, recent advances in treatment mean that the classification of PAH has shifted to that of a long-term, chronic condition.

Retired bus driver Fred Purvis, of Monkseaton, Whitley Bay, who is married to Brenda, 67, was diagnosed with PAH in March last year and welcomes the development of the new treatment. The grandfather-of-six has to take oxygen 16 hours a day for the incurable illness.

He said: “It was devastating when I was told that I had the condition as it has changed my life and my wife has to do so much for me now. I welcome any kind of development in the treatment of PAH as life is precious and it’s important that we do all we can for those with the condition.

“It is fabulous that in the North East we have one of the leading centres for PAH patients. I hope that by raising awareness of the condition it can help someone else.”

The most commonly reported adverse drug reactions with Macitentan are nasopharyngitis, headache and anaemia. The majority of adverse reactions reported were mild to moderate in intensity.

Macitentan is available through specialist prescribing from designated specialist centres.

Robin Bhattacherjee, general manager at Actelion Pharmaceuticals UK: “PAH patients in England are some of the first in Europe to have access to Macitentan, which is a positive step towards the long-term management of PAH.”


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