21 June 2018
Speech in the Scottish Parliament debate
Thank you, Presiding Officer.
This has been a productive debate with passionate and well-informed contributions from across the chamber.
At one level, discussions on the licensing of medicines and negotiations with drug companies can become quite technical and abstract.
However, let us never forget that the outcomes of such debates have reaI-life impacts for the individuals affected.
We had passionate contributions from Anas Sarwar, Jackie Baillie, Kez Dugdale, Miles Briggs, Ash Denham and Brian Whittle.
Orphan and ultra-orphan medicines may treat only a few hundred people per year in Scotland, but that does not mean that they should be overlooked.
Every delay to improving the system of negotiations means another day less for women with incurable HER2-positive breast cancer to spend with their loved ones, and another day in which lives are lost because people with cystic fibrosis are denied access to the drug Orkambi.
This week, the Government has made some improvements regarding access to medicines with the PACS tier 2 system and the newly announced ultra-orphan pathway—steps in the right direction, but action is still too slow.
It has been two years since the Montgomery review, and many patients still do not have access to those important life-sustaining drugs.
Campaigners are rightly frustrated at the lack of progress that has been made in Scotland in negotiations with the manufacturers Roche and Vertex about Perjeta and Orkambi.
That is especially the case when a deal has been made to allow women access to Perjeta through the NHS in England and Wales—the discrepancy in provision just a few miles across the border is a daily, growing injustice.
As my colleague Anas Sarwar said in his excellent speech:
“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?”
In another excellent speech, Miles Briggs talked about the summit that he hosted on Perjeta, and I welcome the work that he has done on that.
He said that the message from campaigners is to keep on working with the Scottish Government, the SMC and the industry to stop this injustice, and pointed out that of course patients value the extra few months with their families and young children, but that too many families face barriers to getting drugs.
Alison Johnstone made some excellent points, but I highlight her point about the Government getting a Crown use licence, which is a very important initiative, and the fact that we have many patent-backed monopolies.
She said that it is vitally important to change the approval frameworks.
Willie Rennie made some excellent points as well.
He talked about advances in medical science, which now give hope to many people who in the past would have had very little hope.
He said that of course we need innovation in health but that it cannot be
“at any price or effectiveness”.
Jackie Baillie made a very powerful and personal speech about examples that she has come across.
She said that there is an opportunity now to do something about the issue and mentioned the portfolio deals that many countries such as Sweden and the USA have carried out.
Ash Denham talked about her constituents with life-threatening conditions and their concerns about pricing and said that companies need to play their part by offering a fair price.
Many other speakers, including Annie Wells, Ivan McKee, Clare Haughey and Alexander Stewart, made excellent speeches.
I see that I have very little time left, Presiding Officer.
Medical research is growing and developing apace. If our systems for approval are too slow in response—if we continue to be reactive instead of proactive—the same problems will occur again and again as new drugs are developed and medical treatment moves forward.
New pathways and systems may sound good but they will not have the confidence of patients, or of members in this chamber, unless they are shown to achieve real results.
I therefore urge the Government to heed the campaigners’ calls and act now without delay to make Perjeta and Orkambi available on the NHS to those who need them now.
Only then, and then only, can it be claimed that true progress has been achieved.
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