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Abi LongfellowYoung British woman with dense sediment disease
Country:
 Great Britain |
Content:
- Evie Longfellow: A British Teen Fighting for Life-Saving Treatment
- A Costly Lifesaver
- Risk of Infection
- Frustration and Determination
- Medical Risks
- A Rare but Denied Disease
- A Health Crisis Emerges
- NHS Response
- Fundraising Efforts
Evie Longfellow: A British Teen Fighting for Life-Saving Treatment
Battling a Rare Kidney DiseaseA 13-year-old British schoolgirl named Evie Longfellow is facing a kidney transplant while also battling the NHS's refusal to provide her with a life-saving drug. Suffering from the one-in-a-million condition called dense deposit disease, Evie has been denied the vital medication eculizumab by NHS bosses.
A Costly Lifesaver
Eculizumab, a humanized monoclonal antibody, costs the NHS £137,000 (almost $180,000) per year. The innovative drug may be necessary after Evie's kidney transplant, but she has been denied funding.
Risk of Infection
Evie, from Wakefield, West Yorkshire, has decided to undergo the surgery because she faces a fatal infection if she continues on dialysis, a treatment that replaces kidney function. However, without eculizumab, Evie's rare condition could lead to the rejection and destruction of her new kidney.
Frustration and Determination
Evie has said, "I'm sick to the back teeth. I'm exhausted. I'm on dialysis every night."
"I struggle to do most things that my friends can do with ease. I can't even go to school. It's just not living."
"People think I'm brave, but I have no choice. If the NHS won't help me, I need to find a way myself. So that's what I'm doing."
Medical Risks
Doctors have told Evie that she is at risk of infection and death from complications related to being on dialysis for two years.
A Rare but Denied Disease
Evie was diagnosed with chronic nephritic syndrome, which severely damages kidney filtration, when she was 10 years old. Her parents, Andy and Jo, were devastated to learn that the NHS would not fund the necessary medication for Evie.
Shockingly, Longfellow's condition was deemed not rare enough by NHS bosses to qualify her for access to the expensive but life-saving eculizumab. Cruelly, Evie has been in hospital with other children who have been given the drug, while she has been "denied it by law."
A Health Crisis Emerges
Evie's health concerns first emerged in March 2013, when she was due to go on a family holiday to Florida. Then 10 years old, Longfellow began rapidly deteriorating. A rushed visit to the A&E department was the start of her parents' worst nightmare. Evie's symptoms were linked to end-stage kidney failure, and she was transferred to a specialist ward.
Dialysis began in December 2013. The teenager now requires dialysis for ten hours every other day. Purification of her blood is currently being done successfully at home. Doctors estimate her average life expectancy on this treatment is between 5-10 years.
NHS Response
A spokeswoman for NHS England stated last year, "This is a very complex situation, but in this case clinicians and medical experts have decided it would not be appropriate to fund a treatment which has not been proven to be effective in these circumstances."
Fundraising Efforts
The Longfellow family is now trying to raise money to buy eculizumab and have set up a crowdfunding page.
