Cystic Fibrosis Treatment

Health and Social Care – in the House of Commons on 23rd July 2019.

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Photo of Ian Austin Ian Austin Independent, Dudley North

What steps he is taking to ensure that people with cystic fibrosis receive the latest treatment for that condition.

Photo of James Frith James Frith Labour, Bury North

Whether he plans to hold a further meeting with Vertex Pharmaceuticals to ensure that new drugs to treat cystic fibrosis can be approved.

Photo of Seema Kennedy Seema Kennedy The Parliamentary Under-Secretary for Health and Social Care

We want patients living with cystic fibrosis to get the best care possible. Progress in specialised treatment for patients with CF means that people are living healthier and longer lives, but I recognise that it is frustrating for everyone, in particular patients and their families, that a deal on Orkambi has not been reached. It is for Vertex and NHS England to enter negotiations. I urge Vertex to consider the latest offer from NHSE.

Photo of Ian Austin Ian Austin Independent, Dudley North

I have heard from people in Dudley and across the country about the difference that those new treatments make, but patients have been waiting for three and a half years now. Some families are having to take extreme measures to secure access to the drugs. Will the Minister and the Secretary of State meet me, people with cystic fibrosis or their parents, and the Cystic Fibrosis Trust so that we can get the whole thing sorted out and the wait for the drugs is not drawn out any longer with another summer or year of impasse?

Photo of Seema Kennedy Seema Kennedy The Parliamentary Under-Secretary for Health and Social Care

I recognise and share the frustration of patients and their families. The situation has been going on for far too long. I again urge Vertex to accept the offer. The hon. Gentleman has been in touch about a meeting, and I understand that we have responded to say that we will give him a firm date shortly.

Photo of James Frith James Frith Labour, Bury North

Sufferers of CF, as we have heard, are well used to the new hope of changes in the Government, but it soon becomes yet another false dawn: they are left drowning in their disease without access to Orkambi. The Minister has to lean in on the business end of the job that she has to do. Will the Government use their leverage, support the buyers’ club—the drastic action that CF sufferers are having to take—and supplement access to the equivalent of Orkambi? That might finally get Vertex to the table to do a deal on this important issue.

Photo of Seema Kennedy Seema Kennedy The Parliamentary Under-Secretary for Health and Social Care

As I said to the hon. Gentleman and other hon. Members in the Westminster Hall debate on the drug, a deal is the preferred option. However, the attitude taken by Vertex, which has been called an outlier in this situation, means that my right hon. Friend the Health Secretary has instructed NHS England to look at other options.

Photo of Sharon Hodgson Sharon Hodgson Shadow Minister (Public Health)

Over the past three years, all of us in this House have heard the numerous calls for Orkambi to be made available to cystic fibrosis patients. The Minister could go down in history if she takes the all-important step this week, while still in her job—I hope she will still be in the job tomorrow—of announcing an alternative route to access cystic fibrosis drugs, such as Crown use licence or clinical trials. Today, before we break for recess, will she commit to that so that families can have Orkambi now?

Photo of Seema Kennedy Seema Kennedy The Parliamentary Under-Secretary for Health and Social Care

The National Institute for Health and Care Excellence process is important, because it is an independent expert review and the way in which we allocate resources sensibly. The Crown use licence is not a quick or easy solution, and it is open to legal challenge, which might delay things even more. Vertex has been offered the biggest settlement in NHS history, and I urge the company to accept it. However—I have said this on numerous occasions from this Dispatch Box and in Westminster Hall—the Secretary of State has urged and asked NHS England to look at other options, such as the ones to which the shadow Minister has referred.