A young woman who spends up to £80 a month to treat her chronic spinal condition is campaigning for her medication to be made free on the NHS.
Poppy Lang, 20, was diagnosed with ankylosing spondylitis (AS) last year having suffered from severe back pain since she was 14.
A type of chronic arthritis, AS causes inflammation in the spinal joints and ligaments.
The body responds to the inflammation by producing calcium and leads the vertebrae to fuse together, which can leave sufferers with severely restricted movement as the condition progresses throughout the body.
CONSTANT PAIN: Poppy feels like she is ‘constantly being punched’
“Every time I move my hips it’s like I’m being electrocuted,” said the Manchester Metropolitan University student, who will live with AS for the rest her life, and has had to give up her love of long-distance running due to the pain.
“It’s like you’re constantly being punched.”
The condition affects more than 200,000 people in Britain and symptoms – pain, stiffness and fatigue – usually start between the ages of 15-35.
Despite the high number of sufferers, it takes an average of nine years for people to be correctly diagnosed with AS.
Poppy had previously been diagnosed with everything from growing pains and trapped nerves to muscle spasms and slipped discs.
The condition is hard to diagnose at its early stages because X-rays do not reveal the inflammation. Instead, an MRI scan is required.
Poppy was eventually diagnosed with AS after having a scan through private healthcare group Bupa.
“I was pretty much in shock, I didn’t understand what I was going to do with this diagnosis or how it would affect me,” said Poppy, who hopes to work with disabled children after completing her university course.
“I am stiff in the morning for around two hours..
“Once I get going and move around, the stiffness eases, but the pain doesn’t.”
“I take 20 plus tablets a day just to manage the pain, although sometimes these aren’t enough.”
Starting in her back, the daily pain has now spread to Poppy’s hips, pelvis, knees, ankles and elbows, forcing her to take a mixture of strong pain killers, anti-inflammatories and vitamins to manage her condition.
Additional costs are racked up by physio-therapy and exercise sessions.
Please help me, it takes two minutes!
We need 100,000 signatures https://t.co/KMzsCsKWXl #spoonie pic.twitter.com/Iw9TDX9seq— Poppymae lang (@poppymaelangxxx) April 7, 2016
Poppy has now registered for the less costly Pre-payment Prescription Certificate, but still believes that AS sufferers should not have to pay at all.
The 20-year-old has set up an online petition calling for AS sufferers to get their prescriptions for free.
“My argument is, if you’re a drug addict you get your methadone for free,” she said.
“I didn’t ask for this condition.
“GPs have said ‘I wish you didn’t have to pay’ but no one’s ever done anything about it.
“People who are suffering from it should get them for free, it needs to be added to the NHS exempt list – it’s not fair.”
A recent study also found that people with AS have an increased risk of suffering from depression, anxiety and sleeping disorders.
“Being so young and having a condition which you don’t really understand yourself, and people don’t really take the time to understand, really is tough,” she said.
“It just makes me feel frustrated as to why I have to have the condition, and that people don’t even recognise it because there is so little awareness.
“I mainly try to stay as positive as I can, but sometimes I do get the blues.”
Along with the physical aspects of living with AS, Poppy’s condition has also affected her social life.
“When you’re popping so many Tramadol’s in a day people look at you funny, I’ve had quite a few arguments with people over it,” she said.
“People just don’t agree and say ‘you shouldn’t be taking stuff like that you’re only 20’, but if I didn’t then I’d be at home not moving.
It’s #SpondylitisAwarenessMonth! Plz WATCH & SHARE this #Spondylitis Awareness Video! More @ https://t.co/xPkU3V2PLE pic.twitter.com/xGFP6lfokf
— Spondylitis.org (@spondylitis) April 1, 2016
“It’s hard for people to understand because you don’t show pain – you just try to get on with it.”
The condition makes everyday tasks like shopping difficult.
“When I go to a shop I’m like an old woman, I have to hold on to a trolley to walk round just so that
“I’ve got something to hold on to.
“There was a woman in Asda who said to her friend ‘why is she walking so slow, she’s only young’, but you don’t know what is going on in someone’s life.”
The next step in Poppy’s treatment will be self-administered biologic injections.
Biologic drugs, which are made from genetically-engineered proteins taken from human genes, are currently the most effective treatment for AS.
Poppy will still be required to pay for her medication, however, and is already struggling to cover the costs.
“I’ve had numerous arguments now with my GP, with my chemist, with everyone,” she said.
“I’ve tried everything, I’ve tried telling them that I’m a student, saying that I only work part time, but the answer is always no.
“I emailed the Department of Health asking them why it’s not already on the exempt list and they just said that the list has not been updated since 1968.”
Under the current criteria, Poppy would have to claim disability benefits to get free prescriptions.
“I don’t really want to class myself as disabled at the age of 20,” she said.
“I could do it but I don’t see myself as disabled, I feel like there are other people that need it more than I do.”
Help raise awareness, share and sign our petition https://t.co/KMzsCsKWXl #as #anklyosingspondylitis #spoonie pic.twitter.com/Rqf8FEU6x2
— Poppymae lang (@poppymaelangxxx) March 27, 2016
Almost 40 charities have now joined forces to call for the Government to abolish prescription charges for people with long-term illnesses.
“The criteria that the Government use to decide who pays for prescriptions, and who doesn’t, is out of date,” said Morgan Vine, co-chair of the Prescription Charges Coalition.
“At nearly 50 years old, it hasn’t kept pace with medical advances.
“Various conditions that people now live with for years either didn’t exist when the exemption criteria were created or had such a short life expectancy that it was not felt necessary to add them.
“As a result, many people of working age with long term conditions are now struggling to pay for their medication, despite earning above the threshold for low income exemption.”
Mr Vine added that the less costly pre-payment system is still not a viable option for many people.
“For those who do know about the pre-payment certificate, some tell us they still struggle to afford it, and it does not work well for those with fluctuating and unpredictable conditions,” he said.
“We’re calling on the Government to review and update the criteria to include all those with long term conditions to put an end to this unfairness.”
For more information on Poppy’s petition, click here.
