That's all from Holyrood Live on Tuesday 12 June 2018.

Labour MSP Jackie Baillie made an emotional plea for the cystic fibrosis drug Orkambi to be made available to her constituent Kelly Gallagher and hundreds of others who currently have no access to the drug.

Ms Baillie was speaking in a member's debate led by Tory MSP Maurice Corry calling for the drug to be available in on the NHS in Scotland.

Labour MSP Claudia Beamish also spoke through strong emotions relaying the story of her constituent Robert Barker who had received the drug.

Public Health Minister Aileen Campbell called on the drug manufacturer Vertex to do all it can to find a fair price as quckly as possible so the Scottish Medicines Consortium can consider a new submission.

Image source, bbc

Ms Campbell says a strong message must be sent to Orkambi manufacturer Vertex.

The minister recognises the current approval pathway is less suited to drugs like Orkambi.

She calls on Vertex to do all it can to find a fair price as quickly as possible so the SMC can consider a new submission.

SNP MSP Alex Neil asks if the Scottish government will instruct Scotland's chief pharmaceutical officer to open discussions with Vertex next week based on portfolio discussion, which would open up the way for an interim arrangement.

"It is absolutely crucial that happens," says the former health secretary.

The confidential talks are ongoing with Vertex and procurement officials, explains Ms Campbell.

She highlights the risk of unlicensed medicines being purchased via the portfolio approach.

However she says she will instruct officials to look at this option.

The minister pays tribute to the campaigners who have been inspiring.

Public Health Minister Aileen Campbell pays tribute to the Cystic Fibrosis Trust ahead of Cystic Fibrosis Week.

She praises her colleagues, Labour MSP Claudia Beamish in particular, for sharing stories of cystic fibrosis sufferers.

The SMC provides a clear and consistent process through which medicines can be appraised, Ms Campbell states.

She highlights that Orkambi is not available anywhere in the UK, nor have NICE approved it.

Image source, bbc

Labour MSP Claudia Beamish praises the work of the Cystic Fibrosis Trust and thanks Robert Barker who is a constituent of hers who allowed her to tell the remarkable story of his taking of Orkambi.

Ms Beamish tells his powerful story through stong emotions.

Image source, bbc

SNP MSP Emma Harper says the ability to have access to medications to support people to have a healthier and more prolonged life needs to be considered.

Ms Harper says there is increasing evidence to say the research is really good for Orkambi and adds clinicians must be listened to.

Labour MSP Jackie Baillie tells the story of her constituent Kelly Gallagher who has cystic fibrosis.

Kelly has dedicated her spare time to raising awareness of the illness and raising money for cystic fibrosis, the Labour MSP tells the chamber.

In tears, Ms Baillie says this debate is happening because Kelly and hundreds of others cannot get access to Orkambi.

We have a historic opportunity to literally save lives, she argues.

The Labour MSP confirms she had twice written to the cabinet secretary seeking a meeting, the second response to which was simply an acknowledgement of receipt.

"I am really, genuinely disappointed."

Ms Baillie welcomes a more recent letter outlining the PACS 2 process, which is the successor the individual treatment request scheme.

Kelly has written to the first minister and Ms Baillie urges members to read this letter.

"We need the Scottish government to get things moving, because a portfolio deal plus interim access now is what is needed."

A young woman with cystic fibrosis whose family has lived on the Isle of Skye for six generations fears she may have to uproot and move to the mainland unless new medicines become available on the NHS.

Graduate Hannah McDiarmid, 23, can trace her lineage back to the early 1800s on her father’s side when her ancestors lived in the north end of the island.

But the part-time archive assistant and tourist advisor, who studied for a Gaelic degree at Skye’s Sabhal Mòr Ostaig, external college, has to make a three-hour each way trip to hospital in Inverness every other month.

Image source, bbc

Ms McDiarmid backs the Cystic Fibrosis Trust’s campaign for better access to medicines.

She says: “Medical research is really changing the way cystic fibrosis can now be treated and there is a medicine called Orkambi that could potentially help me.

“I just wish this was available on the NHS as it could make my life easier and could potentially mean I could remain on Skye with my family rather than have to live closer to the hospital.”

Orkambi is a precision medicine that nearly half of people with cystic fibrosis, including children aged six or over, could benefit from in the UK according the Cystic Fibrosis Trust.

Image source, bbc

Green MSP John Finnie says he has great admiration for the achievements of the pharmaceutical industry, however he tells the the chamber public health should not be in the hands of profit makers.

Mr Finnie praises his constituent Hannah McDiarmid who came to the parliament with her mother recently.

He points out she is now coughing up blood and only just managed to get her lung function back up to 50%.

He points to his motion highlighting Hannah's case.

The Green MSP tells the chamber we must get this process right, concluding "at what cost a life?".

Labour MSP Anas Sarwar begins by describing Orkambi as a "life changing drug".

It has been more than two years since Orkambi received medical approval from the EU, he highlights.

The Labour MSP echoes Mr Neil's call for the government to "knock heads together".

He urges the Scottish government to "back up" budgets if individual treatment requests are approved.

He concludes by urging the cabinet secretary to get on with implementing the SMC review recommendations.

Image source, PA

Hundreds of children suffering from cystic fibrosis have written to Prime Minister Theresa May pleading for the life-changing drug, Orkambi.

More than a thousand letters are being delivered to Downing Street - about three quarters of them from children.

The National Institute for Health and Care Excellence has not recommended the drug on grounds of cost effectiveness.

Ministers have urged pharmaceutical firm Vertex to drop the price. Vertex said it wants to reach an agreement.

The Cystic Fibrosis Trust said the letter campaign was to ask Mrs May and her government to make sure discussions between Vertex and the NHS take place and are supported, so they can agree a fair price.

Seven-year-old Luis Walker, from Horam, near Heathfield, Sussex, wrote the first letter to Mrs May asking her to give him Orkambi.

Read more here.

SMP MSP Alex Neil highlights that cystic fibrosis causes a decline in lung function by around 2% per year.

This means by the time a sufferer is 10, they have lost 20% of their lung function, he explains.

"Time is marching on for cystic fibrosis sufferers."

Sometimes the government must "knock heads together" and the time is right the the government to intervene with the SMC, NSS and Vertex, Mr Neil argues.

The SNP MSP welcomes the move to make Orkambi available under individual treatment requests, but warns this is "not enough progress".

"The quicker we get general approval for this drug, the better."

Vertex should make the drug available at a reduced price, he argues.

Image source, bbc

Mr Corry says people with cystic fibrosis are worried they will not get access to medicines here in Scotland.

He details a number of countries where Orkambi is available, including Ireland and the USA.

The Tory MSP says that is due to the Scottish Medicines Consortium announcement in 2016 that they could not recommend the drug due to its cost, despite acknowledging it being effective.

People with cystic fibrosis are still waiting for help while their health declines, he explains.

Mr Corry concludes by calling for Scotland to lead the way for the UK.

Image source, Cystic Fibrosis Trust

Mr Corry explains clinical data has shown that the drug is able to slow decline in lung function, which is the main cause of death from the condition, by 42%.

He praises the work of all the people and organisations, such as the Cystic Fibrosis Trust, external, which are campaigning to put pressure on the Scottish government, the NHS and pharmaceutical companies to ensure that such drugs reach those who need them without delay.

UK government health ministers have urged a pharmaceutical company to drop the price of a life-changing cystic fibrosis (CF) drug for NHS patients.

Vertex Pharmaceuticals' Orkambi costs £100,000 a year per patient, and has been deemed too expensive for the NHS.

The company rejected an NHS England counter offer, saying it was not enough to fund research into future medicines.

Health ministers Steve Brine and Lord O'Shaughnessy said "time was of the essence" for CF patients.

Vertex said it wants to reach an agreement "as soon as possible".

Cystic fibrosis is a life-shortening genetic condition that causes fatal lung damage and affects around 10,400 people in the UK.

Read more here.