Bethanys unfunded life saving drug
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My name is Bethany Henry and I am 9 years old. I have a rare genetic disorder called tuberous sclerosis complex. This causes me severe insomnia and I have up to 50 epileptic seizures a day which cannot be controled by medication, I also have development delays and learning differcuilties and also live with tumours in my liver, brain and kidneys.
Thank you for taking the time to read about our little princess Bethany.
We are currently struggling to get a drug on the NHS called everolimus which is proven to help with her kidney, brain and liver tumours.
The drug is not eligible to be considered for funding for TSC patients by the National Institute for Health and Care Excellence because it is too rare a condition
However, because there are more than 30 patients in urgent need, it is also not possible for clinicians to bid for exceptional funding from NHS England. The Tuberous Sclerosis Association said many requests had been turned down or not considered by the NHS
Because of the bureaucratic slowness Bethany will
lose both of her kidneys and is currently at risk of a serious bleed which can be fatal if the NHS do not supply this life saving drug.
The government doesn’t want to spend money on certain types of children and because TSC isn’t very well known it doesn’t matter to them
Without everolimus treatment Bethany could lose her kidneys and liver, which would cost the NHS more money in treatment than the drug. We don’t want to think about what comes after that, she has no other chance.
We are trying to raise this money to buy everolimus to give Bethany a fighting chance as you are able to buy the drug as its liecenced for patients with TSC meaning Bethany is allowed the drug but because of the bureaucracy behind it all we cannot get the funding to get it.
Thank you once again for taking the time to read this and giving Bethany at least a fighting chance
Thank you for taking the time to read about our little princess Bethany.
We are currently struggling to get a drug on the NHS called everolimus which is proven to help with her kidney, brain and liver tumours.
The drug is not eligible to be considered for funding for TSC patients by the National Institute for Health and Care Excellence because it is too rare a condition
However, because there are more than 30 patients in urgent need, it is also not possible for clinicians to bid for exceptional funding from NHS England. The Tuberous Sclerosis Association said many requests had been turned down or not considered by the NHS
Because of the bureaucratic slowness Bethany will
lose both of her kidneys and is currently at risk of a serious bleed which can be fatal if the NHS do not supply this life saving drug.
The government doesn’t want to spend money on certain types of children and because TSC isn’t very well known it doesn’t matter to them
Without everolimus treatment Bethany could lose her kidneys and liver, which would cost the NHS more money in treatment than the drug. We don’t want to think about what comes after that, she has no other chance.
We are trying to raise this money to buy everolimus to give Bethany a fighting chance as you are able to buy the drug as its liecenced for patients with TSC meaning Bethany is allowed the drug but because of the bureaucracy behind it all we cannot get the funding to get it.
Thank you once again for taking the time to read this and giving Bethany at least a fighting chance
Organisator
Luke Henry
Organisator
