Sharon Hodgson MP

Working hard for Washington and Sunderland West.

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ECHO COLUMN: Knowing that we can still achieve some good is what makes my job all the more worthwhile

You can read Sharon's latest Echo column below or on the Sunderland Echo website



Last week, after up to four years of campaigning, thousands of Cystic Fibrosis patients in England received the news that they would now have access to the life-saving drugs they need, Orkambi and Symkevi.

Patients, their families, campaigners and politicians from across the political divide have fought for years for access to these life-saving drugs.

The reason for the fight: because the drugs weren’t deemed cost effective enough for NHS England to be able to buy them from the pharmaceutical company, Vertex.

Negotiations have started and stalled between NHS England and Vertex for much of the four years since Orkambi was appraised by the National Institute for Health and Care Excellence (NICE) for use.

This has understandably been frustrating for patients, whose health will have deteriorated whilst waiting for access to the drug.

But this shared-frustration amongst patients, their families and charities, such as the Cystic Fibrosis Trust, is what has generated one of the most successful public affairs campaigns that I can recall as a Member of Parliament.

Holding meetings inside Parliament and rallies outside Parliament, usually seen wearing yellow, campaigners have made themselves heard on a huge scale and have seized that opportunity to make sure that MPs and Peers know the problem and how it can be solved.

I was proud to play a part in this process. As the Shadow Minister for Public Health, I have responded to four Parliamentary debates on access to drugs on Cystic Fibrosis and used three oral health questions to put pressure on the Government to take further action and intervene in the negotiations.

I also called on the Government to consider other means of making the lifesaving drugs available to patients, such as Crown Use Licensing or clinical trials.

I am pleased that in the case of drugs for Cystic Fibrosis patients, it hasn’t come to that. But there are still patients with rare diseases, such as Phenylketonuria (PKU) and Spinal Muscular Astrophy, who are still fighting for access to the drugs that they need, and I will continue to put pressure on the Government to ensure that they get them.

Behind all the Brexit noise in Westminster are real people with real problems, who MPs fight on behalf of every single day.

It makes me proud to know that Cystic Fibrosis patients will now get the lifesaving drugs that they need and deserve.

It is successes like this that keep me going, knowing that whilst even in Opposition, we can still achieve some good and genuinely help people, is what makes my job all the more worthwhile and spurs me on to achieve even more for people who are suffering under austerity imposed by this heartless Conservative Government.

The Cystic Fibrosis campaign shows us what can be done against all the odds, and I believe that we can all learn something from their determination, persistence and professionalism.


Sunderland Echo website

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