Hansard

I stand here to stick up for patients in Scotland who have no voice: the patients with breast cancer or cystic fibrosis who have been denied access to vital, life-prolonging medicines due to bureaucracy. They have been failed by a system that has placed a value on their life and decided that the price tag is too high. Mums or dads, a son or daughter or a brother or sister—they are people who need this Parliament to stand up for them and make their voice heard in the hope that the Scottish Government listens and acts.

Many of the patients we are speaking of do not have much time. It is too late for many of them to benefit from the medicines. What time they do have, they are using to campaign so that others do not find themselves in the same position of knowing that they have a terminal illness and that there are drugs available that will allow them to spend more time with their families: time that they will not get without the drugs that they need. One of those drugs is Perjeta, a breast cancer drug that prolongs someone’s life for 16 months, which is 16 months more with their loved ones. Breast Cancer Now deserves our thanks for leading that campaign, helped by the bravery of patients. Today, we are their voice.

Last week, Jon Ashworth, the shadow Secretary of State for Health and Social Care in England, and I met Breast Cancer Now and campaigners in Edinburgh. It is completely unacceptable that Jon Ashworth’s constituents in Leicester would be given access to Perjeta to prolong their lives but that my constituents in Glasgow are being denied that access. Women in England, Wales and Northern Ireland can get Perjeta on the national health service as a matter of course, but women in Scotland cannot get Perjeta. The drug has been rejected three times by the Scottish Medicines Consortium as it is not considered cost effective, despite it being recognised as clinically effective. I ask again: what cost life?

The other drug referred to in our motion is the life-prolonging cystic fibrosis drug Orkambi. It slows the decline in lung function—the main cause of death in cystic fibrosis—by 42 per cent. Orkambi also cuts the number of infections that require hospitalisation by more than 60 per cent. As we heard in a debate last week, the longer the delay in approving access to Orkambi, the greater the decline in lung function for cystic fibrosis sufferers.

That is why the matter has to be treated urgently. Professor Gordon MacGregor, a cystic fibrosis consultant, spoke about his anger that he has in his cabinet the drugs to prolong his patient’s life but he does not have the permission to prescribe them. On some occasions, the pharmaceutical company has even given the drug for free on compassionate grounds, but the clinician still cannot prescribe it, due to bureaucracy.

I thank the Cystic Fibrosis Trust, the patients and the campaigners. However, it should not take individuals’ courage in coming forward and sharing their very personal stories on the front page of a national newspaper, or indeed some individuals, as in the example of Anne Maclean-Chang, crowdfunding on Facebook, for the Scottish Government to take action and for them to get the vital drugs that they need.

That is why the Government must implement in full and without delay the recommendations in the Montgomery review, which was published in December 2016. In particular, the Government must deliver the ability to negotiate on price during the approval process. It makes sense that, if the drug has been accepted as clinically effective but discussions on cost effectiveness are on-going, the Scottish Medicines Consortium and NHS National Services Scotland should be able to negotiate with the pharmaceutical companies without asking them to reapply in a process that can take months and months.

It appears that the Government will support our motion, and that is welcome. However, for the cabinet secretary to write to me confirming which recommendations will be taken forward by the end of 2018—which is welcome—just shortly before this debate; for her to write to Jackie Baillie and Alex Neil just today about issues that they have been campaigning on; and for her to write to the chair of the Health and Sport Committee on these vital issues just yesterday only helps to emphasise that it should not take campaigners on a front page and us having to lodge motions in this Parliament to get action from the minister and the Government so that people can get access to life-saving or life-prolonging drugs.

As I said, I welcome the fact that the minister has indicated that she will support our motion, but can she confirm that the ability to negotiate on price will begin now, as the motion calls for, and not at some undefined point in 2018? Every single day that is lost in that process is a day when people are denied access to medicines, so now has to mean now. Will the cabinet secretary confirm to patients and clinicians when she expects Perjeta and Orkambi to be available to them?

The Government’s amendment states that the decisions on the new individual patient treatment request process—the peer-approved clinical system 2 process—will not be based on cost. Although that is welcome in words, health boards are in practice facing budgetary pressures that mean that they will have to cut up to £1 billion over the next four years. Therefore, will the Government guarantee two things? First, will it guarantee that the new PACS 2 process will be faster in delivering access to medicines than the previous process was? Secondly, will it guarantee that additional funds will be made available to health boards so that they can approve access to vital medicines for individual patients without knock-on pressures on existing services?

I go further and ask that the Government considers a portfolio deal on cystic fibrosis medicines. Last week, the Minister for Public Health and Sport, Aileen Campbell, said that that was not possible, as the Government could not spend money on drugs that have not been approved. I say to her that it starts to cost money only when the drug has been approved and is being prescribed by clinicians.

I want to end with the brave words of the campaigners. Breast cancer patient Jen Hardy said about Perjeta:

“Someone an hour and a half down the road can get it but I can’t. We shouldn’t have to think about cost because people in England and Wales don’t need to ... It is terrible not only for me but my family as well.”

“I think about what 16 months would mean for me. It’s a graduation, a wedding, knowing your kids are doing ok. We need this drug now to stop women dying earlier than they should.”

Jen Hardy will not get Perjeta, but she is campaigning for others to get it.

Kelli Gallacher, who is 24 and has cystic fibrosis, has been told not to expect to live beyond 31. Her letter to the First Minister says:

“I don’t have time to wait. These drugs are available in other countries and, to me, it feels like they have been put on a shelf just out of my reach. I know they are there but I can’t get to them.

More people with”

cystic fibrosis

“will die unless something is done. We need these drugs now. Please don’t let us die.”

For patients with breast cancer or cystic fibrosis, every day matters. I ask members to please support our motion and make today matter.

I move,

That the Parliament calls on the Scottish Government, as a matter of urgency, to bring NHS National Services Scotland, the Scottish Medicines Consortium and the relevant pharmaceutical companies together to deliver access to the life-prolonging medicines, Perjeta and Orkambi, for patients in Scotland who need them; notes the commitment that was made by the Scottish Government in December 2016, following the Review of Access to New Medicines (the Montgomery Review), to improve ways of negotiating with drug companies on the cost of medicines, and calls for a new system of negotiation to be implemented now.