I recently met Malcolm, a 53-year-old man from south Wales with severe heart failure. He needs a new heart. Malcolm has been on the transplant waiting list for five years and were it not for a mechanical pump implanted into this heart – a left ventricular assist device, or LVAD – he would die. He plugs the LVAD into the mains electricity every night to charge the batteries.
He is an “expert patient” and frequently teaches medical students and junior doctors about the treatment of advanced heart failure and LVADs. He is unable to do certain things, such as take a bath or swim, as the LVAD must not be submerged in water.
His condition has improved to the extent that he is now deemed fit enough for a heart transplant, but in five years he has not received “the call” where patients are informed that a donor heart has become available.
With no heart transplant centre in Wales, patients typically travel to one of six heart transplant centres in England. Malcolm is frustrated with the barriers to receiving treatment for advanced heart failure that he believes result from his status as a Welsh patient.
At first he was referred to the transplant unit in Birmingham, where he had invasive cardiac tests to assess his suitability for a transplant. The consultant told him that he was too sick for a heart transplant and that if Malcolm were an English patient, he would immediately implant an LVAD as a bridge to a new heart. But instead of promptly providing Malcolm with essential treatment, doctors in Wales had to apply for funding from the Welsh NHS – the process took three agonising months to complete and the request was initially rejected.
“I felt that someone wanted me dead. I had end-stage heart failure and I was made to wait while a committee decided whether my life-saving treatment was worth funding,” he recalled. The cost of an LVAD is around £80,000 to £100,000, but this is mitigated against the cost of treating patients with recurrent admissions to hospital with heart failure.
Heart transplantation was first performed on a human in 1967 – the patient died after 18 days. Since then, immunosuppressant drugs have reduced the rates of organ rejection and the ten-year survival rate has increased to 60 per cent. In 2018 there were around 280 people on the heart transplant waiting list.
The UK has some of the lowest rates of heart transplants in Europe, with just under three transplants per million population a year, compared with 16 per million population in Slovenia.
One of the main reasons is that relatives often refuse to allow organ donation. Since 2015, Wales has had an opt-out system of organ donation where everyone is presumed to be a donor unless they voluntarily opt out. From 2020, a similar system will apply to England.
Vaughan Gething, the Minister of Health in Wales, wants to encourage more dialogue about organ donation and is championing greater public education about its importance. “We want everyone to have this conversation,” he says, “as you never know when you or your family member might need an organ transplant.” The results of the opt-out system have not yet shown an increase in organ donation in Wales: more time is needed to see if this will change for the better.
Malcolm is philosophical about the prospects of living long-term with the LVAD. “Nobody knows what the long-term outlook for patients with LVADs is because they have only recently been introduced,” he says. “I know that this machine has saved my life, but if a transplant were to become available, I would go for it.”
He urges people to register to donate their organs and also to inform their family of their wishes. He says: “Being an organ donor makes your legacy one that gives other people the chance of life.”
Nishat Siddiqi is a cardiologist based in south Wales
This article appears in the 10 Jul 2019 issue of the New Statesman, The state we’re in