'Hospitals are denying me chance to take free drug to ease my MND symptoms'

A DESPERATE mum with motor neurone disease has sent a heartbreaking message to Health Secretary Wes Streeting, pleading with him to help her get a groundbreaking treatment that could slow her symptoms.

- By Hanna Geissler Health Editor

Seckin McGuirk, 57, was diagnosed last year with a form of MND caused by the SOD1 gene mutation, which can be targeted by a new drug called tofersen.

But despite the medication being offered free to the NHS, no hospital is willing to fund the bed and care needed for her to access it. Some 40 patients are thought to be receiving tofersen through the scheme but around 20 are being unfairly denied access.

Appealing to the Health Secretary to ensure it is available for everyone who could benefit, Seckin writes: "Every day, my MND symptoms get worse. You’ve got the power. Please use it."

The SOD1 gene mutation causes around one in 50 cases of MND.

Tofersen works by stopping the production of toxic proteins.

A fortnight ago it was approved for use by the Medicines and Healthcare products Regulatory Agency which judges whether new drugs are safe

Appeal...Seckin and Wes Streeting

Dear Wes,

When you said the NHS is broken, you were right. If it wasn't, I could be looking forward to years more life.

My name is Seckin, and I have motor neurone disease. It’s fatal, but the good news is I'm one of the 2% of people with it who can benefit from the lifesaving drug tofersen.

It’s free while it’s going through the approval process, and the NHS is now giving it to most people who can benefit from it.