MPs debate access to cystic fibrosis drugs

On Monday, MPs debated access to cystic fibrosis drugs, focussing on access to Orkambi.

Paul Scully MP (Con, Sutton and Cheam) began the debate by asking the House to consider an e-petition on access to Orkambi and other drugs for people with cystic fibrosis (CF) and he sets out his position on the current negotiations between Vertex and NHS England on access to Orkambi:

“There are clearly two sides to the negotiations. The NHS has to understand that CF sufferers are not just names on a spreadsheet; they are real people. We are all here as politicians to represent our constituents, but we are humans first and politicians second. We have to remember the humanity. On the other side of the negotiations, Vertex needs to make sure that these patients — the people living with CF — are not just names on a shareholder report.”

Source: Hansard

Contributions were made from a number of MPs with an interest in access to medicines including Dr Sarah Wollaston (Ind, Totnes and Chair of the Health and Social Care Select Committee), and Seema Kennedy MP (Con, South Ribble and Parliamentary Under-Secretary of State for Health and Social Care) responded on behalf of the Government.

In particular, the Minister expanded on options which might break the impasse between Vertex and NHS England on access to Orkambi stating that:

“Given that Vertex remains an extreme outlier in both pricing and behaviour, it is no wonder that patients and families have been looking at alternative solutions to secure access to this drug, and we have heard about the buyers’ club. Hon. Members have also talked about Crown use licensing, and the hon. Member for Bristol East (Kerry McCarthy) talked about large-scale clinical trials.

“Unless Vertex changes its approach and behaves responsibly, I have a moral obligation to look at these other options. Of course NHS England and NICE will ​carry on the negotiations, because a negotiated outcome is the desired option. However, I have no alternative but to look at these other options on the table.”

Source: Hansard

The Minister also pointed to recent deals reached as part of the NICE appraisal process including for ocrelizumab, Spinraza and CAR-T treatments.

In addition to this, Dr Wollaston highlighted an interim agreement as a possible solution to the impasse as been achieved in other countries:

“The most promising idea that we should take forward to apply pressure is that of interim agreements, such as in Scotland. An interim price is agreed, further research is carried out and all parties agree to a review based on the outcomes of that further research. That is being managed in Scotland and other places, as we have heard from other speakers today, and I urge Vertex to do that here.”

Source: Hansard

The debate focussed on access to Orkambi and treatments for CF however a number of MPs took the opportunity to draw attention to the need for improvements in the appraisal process for rare disease treatments.

The Minister confirmed that Crown use licensing is not something that any Government would consider lightly.

In conclusion Paul Scully called for caution saying:

“We have heard a lot about NICE and possible changes for that portfolio drug—system proposals. We have heard a lot about the need for Vertex to yield somewhat in the negotiations; as the Minister said, it is the outlier. I caution colleagues as they look at the alternatives, whether Crown use, compulsory licensing or a buyers’ club. Yes, we need those weapons in our armoury for the negotiations, but there is always the possible unintended consequence of fallout—the risk for future research into rare diseases of all sorts—if we start to undermine a market that clearly, however, needs to be looked at in relation to big pharma and how it can hold the NHS over a barrel. We just have to be careful about unintended consequences”.​

Source: Hansard

More information on this story can be found on MAP news.

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Published 12. June 2019 in News, News UK