Patients with common but debilitating heart disease miss vital surgeries that could relieve their symptoms, and are instead given drugs that offer little chance of improvement, experts say.
About 1.3 million Britons suffer from a ‘leaky’ mitral valve in the heart, known as mitral regurgitation. The error means that the blood can flow in the wrong direction through the organ and back to the lungs, causing shortness of breath, chest pain and extreme fatigue.
Over time, the heart is less able to supply the rest of the body with blood, eventually leading to heart failure and death.
There is a new minimally invasive procedure that can repair the damage called transcatheter edge-to-edge repair. Yet NHS England refuses to fund simple treatment in half of the cases, saying these patients should have open-heart surgery instead.
Now a group of leading heart health experts in the UK are calling for change.
dr. Sam Dawkins, consultant cardiologist at John Radcliffe Hospital in Oxford, says: ‘For the majority of these patients, open heart surgery is not an option because they are too weak. Transcatheter edge-to-edge repair would save thousands of lives if offered on a wider scale, while the cost of further treatment would later decrease.”
Mitral regurgitation is broadly split into two types. In about half of patients, damage to the valve leading to the leak is caused by age-related wear. This is known as primary mitral regurgitation.
GRATITUDE: The procedure was a lifesaver for Julie Archer, right, with her husband and daughter Hannah
In 2019, transcatheter edge-to-edge repair was given the green light for this group by both NHS spending watchdog the National Institute for Health and Care Excellence and NHS England.
But approval was not given for the tens of thousands of patients with the other type, known as functional mitral regurgitation.
In these patients, the valve damage is due to pressure from a swollen heart muscle — usually as a result of a heart attack.
A small number of patients with functional regurgitation may undergo open heart surgery, in which a narrow ring is placed around the valve to pinch it shut. But for most, it’s considered too risky because of the extent of the damage to the heart. Instead, these patients are prescribed a cocktail of drugs to control blood pressure and reduce the chance of blood clots.
Experts say this is ineffective, leaving many with crippling breathing problems and a high risk of developing heart failure.
Studies show that only about half of those who undergo drug treatment survive more than two years.
Being offered a transcatheter edge-to-edge repair would greatly improve their outlook.
Performed under general anaesthetic, the process takes only two hours. Patients can go home the next day.
After a small incision is made in the groin, a flexible tube is inserted and threaded to the heart. A metal clip is passed through the tube and clamped onto the mitral valve, sealing the leak and restoring normal blood flow.
After that, patients no longer have to take pills.
Professor Dan Blackman, a cardiologist at Leeds Teaching Hospitals NHS Trust, says getting NHS funding is ‘excessively cumbersome and slow’.
He adds: ‘Instead of endless repeat prescriptions and hospitalizations – which are time-consuming for patients and NHS staff – edge-to-edge repair solves the underlying problem for good. Make no mistake, patients across the country will die from mitral valve problems because they don’t have access to this treatment.”
The relatively common heart condition affects around 1.2 million people in the UK and can eventually lead to heart failure and death (stock photo)
The experts believe that the reason it has taken so long to give approval is simply due to red tape.
Prof Blackman says: ‘We have been pushing for it to be funded for all patients with mitral regurgitation since 2018. But when NHS England last looked at the procedure in 2019, they failed to take into account two of the latest studies showing the benefits of the procedure.”
In 2020, Julie Archer, a 60-year-old events manager from Gloucestershire, became one of the lucky few to receive the procedure. She had had a heart attack that severely damaged her mitral valve. She says: “Doctors said I needed open heart surgery to get better, but I was just too weak. My family was called to see me in intensive care to say goodbye.”
Julie was transferred to John Radcliffe Hospital in Oxford, which uses her own funds to cover the cost of edge-to-edge repairs. She had the procedure a few days later and was back home within two days. She says, “Within weeks I was back at work.”
A spokesperson for the NHS said: ‘The NHS makes decisions about which treatments are routinely performed depending on a wide range of factors, including clinical effectiveness and best value for money. A proposal to perform mitral valve leaflet repair for functional regurgitation is currently being considered.”