End drug delays
Stewart was given vital CF drug in October for free but it took health board till December to authorise him using it and the delay cost him his life. Now his grieving family have begged the Scottish Government to make the drug available to other sufferers
THE campaign for a new life-saving drug came too late for Stewart Kelly.
The 30-year-old had cystic fibrosis and needed new but unlicensed life-saving drug Symdeko.
He was offered the drug for free but faced a two-month delay before health chiefs allowed it to be prescribed.
His family say the delay was disastrous for his health and, despite eventually getting the drug, he died earlier this week.
Stewart’s case is not unique – desperately ill people struggle to get drugs which are available in other countries, sometimes just over the border in England.
Nicola Sturgeon has already tried to press one drug company to hurry up and table a fair price for Orkambi – another cystic fibrosis medicine.
Doctors are desperate to prescribe these vital drugs, patients are crying out for anything to extend or save lives.
Negotiations have to be stepped up, and delays in treatment must be eradicated.
Tragically, it’s too late for Stewart – no one should be left waiting like he had to.
A TRAGIC young man has died after a two-month delay in getting access to a new life-saving drug.
Stewart Kelly, 30, had cystic fibrosis and when his condition got to the critical stage, a drug company provided a new unlicensed drug for free.
But it took two months to go through a special health board committee for unlicensed drugs before Symdeko could be prescribed.
And in that time. Stewart’s lung function had dropped to a perilously low 11 per cent – and the drug came too late to save him.
Despite a brave battle, Stewart, from Paisley, died on Wednesday.
His family last night insisted Stewart could have been saved if he’d got access to the drug earlier – and begged the Scottish Government to make the drug available to other CF sufferers.
His heartbroken aunt Margaret Beveridge said: “He started his recovery but it was just too late. We had hoped, because he was such a fighter, that he would live long enough for the third generation of the drugs to arrive.”
But Margaret added: “There are other patients who could still benefit from this drug.”
Drug company Vertex offered the drug to Stewart and five other cystic fibrosis patients last October.
Stewart was finally allowed to have the drug in December by his local health board. The other five people offered the drug were refused. One of them has now also died.
Margaret spoke out in an effort to persuade Holyrood to seek an agreement with Vertex to provide drugs such as Orkambi, Symdeko and others which will soon be available to save people like her much-loved nephew.
On Monday, the Record told how a cystic fibrosis consultant was watching another young man die because he was unable to give him Orkambi – a medication which halts the progression of the disease – despite Vertex providing it free on compassionate grounds.
Professor Gordon MacGregor is desperate to prescribe Orkambi but the Scottish Medicines Consortium, who advise the NHS on which drugs they should prescribe, have rejected it because of the cost.
And even though the drug firm have offered to provide it free, the patient’s health board would not allow it.
CF campaigners are trying to persuade the Scottish Government to negotiate with Vertex on the entire portfolio of their CF drugs – including those yet to come on the market.
Those negotiations are already under way in England and Wales.
Margaret, 65, of Kilmaurs, Ayrshire said: “Stewart was diagnosed with cystic fibrosis at birth. For the last 10 years, I have been in touch with Vertex and two years ago, they provided Orkambi free on compassionate grounds but Stewart couldn’t tolerate it.
“I kept in touch with them and in October, they offered Symdeko to Stewart and five others. But he had to wait until December to get it and in those two months, Stewart had deteriorated so much. We knew he couldn’t survive long term.
“His weight dropped to 100lb and his lung function went down to 11 per cent. It was just awful. He was in so much pain and he couldn’t breathe. He was on morphine during the night and was on oxygen constantly.”
When Stewart was finally given Symdeko, he did begin to improve but the damage to his lungs was so great he did not survive.
Margaret, who works in the pharmaceutical industry, explained: “Stewart couldn’t breathe because the mucus was so thick and sticky. Even with intensive physiotherapy he couldn’t breathe. But the first thing Symdeko did was enable him to spit the mucus up and once he started clearing his lungs of the mucus, the antibiotics could get in and work.”
Now, all Stewart’s family can do is speak out to prevent this horrible disease taking someone else’s son or daughter unnecessarily.
Margaret said: “Orkambi is the first generation of these new drugs and will hold them stable but there can be side effects. Symdeko is a second generation drug. Incredibly, Stewart was still walking around after he got it. It can give back some lung function. But there is a triple combination, a third generation drug, coming in a few months and that is a life-changer.
“People with cystic fibrosis will be able to live a normal life. Two of Stewart’s friends died last year. Their doctors didn’t even tell them about Orkambi or Symdeko. They had no hope that something was coming.”
On May 20, Celtic-daft Stewart was well enough to attend Scott Brown’s testimonial match at Parkhead. Margaret said: “He had such a good time and met people like comedian Kevin Bridges and Lisbon Lion Bertie
Auld as well as some of the current team. He got selfies taken with them.
“He had his oxygen with him but he took it out briefly for photos. He didn’t want to be seen as a sick person.”
Just a week later, he was admitted to hospital again. Margaret said: “He had a beautiful girlfriend Dionne Pearson. On Tuesday, she celebrated her 22nd birthday with him at the hospital. He died the next day.”
Labour’s Jackie Baillie is leading the campaign for access to the drugs along with the SNP’s Alex Neil. She said: “This is tragic for his family and my heartfelt condolences go to them. This should be the spur for us to make sure there is easy access to life-saving treatment.
“We need to make sure cystic fibrosis sufferers get the drugs early enough to make a difference. Let’s stop delaying these drugs and let doctors get on with saving lives when we know there are drugs which can do so.”
A Scottish Government spokesman insisted: “We want everyone to have access to effective drugs that would benefit them and ensure that pharmaceutical companies act responsibly in the prices they seek for their drugs.
“The Health Secretary has strongly encouraged Vertex Pharmaceuticals to make a fresh submission for Orkambi, at a fair price, to the Scottish Medicines Consortium. Decisions made by the SMC are independent of ministers and Parliament.
“Officials from the Scottish Government and the NHS will be meeting Vertex this month to reiterate our eagerness for them to offer their drugs to the NHS at a fair price that would allow them to be routinely used by clinicians.
“In addition, there is a new system which allows clinicians to apply to their board to consider the use of medicines, in some circumstances, that have not been approved by the SMC.”