The Everolimus drug is finally available for use through NHS England after the long-running #FundOurDrugsNOW campaign led by Liberal Democrat MP for Leeds North West Greg Mulholland.

After much delay, NHS England has finally published a policy statement allowing the drug to be used to treat those suffering with the ultra-rare disease tuberous sclerosis complex (TSC) and as a result have kidney tumours, known as angiomyolipomas (AML).

The news comes after the cross-party, multi-organisational #FundOurDrugsNOW campaign that Greg Mulholland has led over the last 19 months with charities, families and campaigners. The campaign has fought for treatment for three particular ultra-rare diseases to be made available through NHS England.

Tuberous sclerosis, also known as tuberous sclerosis complex, is a rare genetic condition that causes mainly non-cancerous (benign) tumours to develop in different parts of the body. The tumours most often affect the brain, skin, kidneys, heart, eyes and lungs. Tuberous sclerosis is present from birth, although it may not cause obvious problems immediately. It’s estimated that around 1 in every 6,000 babies are born with the condition.

Over the last 19 months, the campaign has rallies outside Parliament, the Department of Health, 10 Downing Street, and Greg has questioned ministers, tabled motions and met with life sciences minister George Freeman MP. Following repeatedly delays this year, Mr Freeman wrote to Greg to say these delays were due to further negotiations on price with drugs company Novartis.

Mr Freeman wrote in his letter:

“I am delighted to say that NHS England and Novartis have succeeded in reaching an agreement. As a result, the policy statement for Everolimus to treat AML has now been published.”

Commenting, Greg Mulholland MP said:

“This is excellent news which is long overdue. Everolimus is proven to be effective at treating kidney tumours for those suffering with tuberous sclerosis complex. Patients with the condition and their families will welcome the news that they can now get the drug through NHS England.

“I want to pay tribute to the campaigning by the Tuberous Sclerosis Association, and all families and patients who have pushed for this. It is yet another success for the #FundOurDrugsNOW campaign and I want to thank the minister for delivering on this.”

Jayne Spink, Chief Executive of the Tuberous Sclerosis Association, added:

“We are enormously grateful to Greg for all he has done to help secure access to Everolimus for treating kidney tumours in TSC patients. We’re hoping that access will now also be granted to the drug for treating TSC brain tumours. Greg has been a fantastic champion.”