Petition: Jeremy Hunt: Help my daughter get the drugs she needs to live

by Luke Henry Portslade, United Kingdom via Change.org

Bethany, is a nine year old and one of the bravest people I know. Although I would say that – I am her father! Bethany has a rare genetic condition. She has tumours on her brain, liver and right kidney. She suffers epileptic fits up to 50 times a day, suffers insomnia and has learning difficulties.

It’s heartbreaking and the drugs she is on are not working.Her doctors say the anti-cancer drug Everolimus will work and clinical trials prove this.

But NHS red-tape means Bethany has been denied funding for the drug.

Everolimus is already used on cancer patients and our doctor says it is the best drug available for Bethany’s condition – it could shrink her tumours and stop her fits. But because Bethany’s tumour is non-cancerous she cannot have funding for Everolimus.

The doctors treating Bethany have been fantastic and supportive. This makes it even more frustrating that red tape and bureaucracy is making our daughter suffer.

There is a small group of people in the UK who have applied to use this drug – I know of 17 in my area. It used to be 19 but two sadly passed away due to not receiving Everolimus in time.

If Bethany was the only person needing the drug they might make an exception and grant it, but because there is a small group of people asking for this drug, a policy must be decided and that could take a year or more. We might not have that long.

This is a desperate situation for any parent. I am even considering selling my house so we can pay for the treatment – but that won’t help the others in Bethany’s situation.

Doctors tell us there is no doubt this drug works – it is just bureaucracy standing in our way. I’m asking Jeremy Hunt to cut through the red tape and let us use this drug.

It will save lives. It will save my daughter’s life.

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