A man whose life has been extended with a specialist drug not available on the NHS has welcomed the Scottish Government’s decision to consider a new system of negotiation with drug companies.
How the health board obtains life-improving drugs was an issue recently raised by MSP Claudia Beamish in connection with the lifesaving drug Orkambi which can help people affected by Cystic Fibrosis (CF).
Claudia raised the case of a constituent and personal friend of hers who knows first-hand the benefit of the drug when he was given it on compassionate grounds for CF.
Currently, Orkambi is not available on the NHS in Scotland.
Claudia told the government debate of the heart-wrenching and incredible story of local resident Robert Barker.
She said: “I am pleased for people like Robert who no doubt will warmly welcome the recognition that this drug should be available to those who need it. However, these people do not have time to wait and these negotiations have to happen now.
“The SNP Government have had the Montgomery Review’s recommendation since 2016 that the NHS must take a stronger role in negotiating the cost of medicines. Sadly, it has taken campaigning from people in desperate circumstances to bring this issue to the fore.
“MSPs Alex Neil and Jackie Baillie have also done a considerable amount of work in the run up to the debate.
“No further delay in reforming the system and delivering access to these drugs will be acceptable.
“Orkambi and the next generation of drugs to treat Cystic Fibrosis are proven to slow down and in some cases reverse the gradual lung deterioration which is part of this condition. Some young people have died waiting and this cannot be allowed to continue particularly when the drug is available.”
Robert said:“The vote in Parliament is a step forward but these negotiations can’t wait any longer. I know first-hand how Orkambi can improve the quality of life for people with this disease. This drug has the capability to help, but tragically people just can’t access it at present.”
The Review of Access to New Medicines was undertaken by Dr Brian Montgomery to assess the impact of the new approach introduced in 2014 by Scottish Medicines Consortium. The new approach aimed to increase access to specialist medicines.