It does tear your life apart, says Enid Quayle who lives in Peel with her husband Alan.

In 2000, Enid was 37 and working as a nurse in the private wing of the old Noble’s Hospital.

She recalls: ’I was making a bed one day and I noticed one of my fingers was curling back and it was red and swollen at the base.

’I saw Dr Clague and he diagnosed seronegative rheumatoid arthritis (RA). From then on it went to my wrists and shoulders then my ankles and feet. I’ve now got extra bony bits growing into my ankles.

’I also have a disc bulging in my spine and I have to have injections into my spine to relieve the pain.’

Despite being on a cocktail of drugs which includes high doses of steroids and injections of Methotrexate and golimumab (Simponi), Enid cannot walk far because of the pain and often has to use a wheelchair.

’I can’t walk all the way around Shoprite in Peel anymore,’ she says.

To make matters worse the steroids have caused her to pile weight on and she has just been diagnosed with Type 2 diabetes because of this.

’The steroids keep me to a certain level but they’re not good for me,’ she says, ’and I have exhausted all other medications over the past 19 years.’

Her visiting consultant, Professor Moots, agrees.

In April last year he sent a letter to Enid’s GP saying: ’[Enid] is now requiring quite a lot of steroid but still is having such active disease that it is very hard for her to get out and about and she relies on her husband to help her walk.

’I am very concerned about this. The consequence of active rheumatoid arthritis includes accelerated cardiovascular disease and shortened life expectancy. The requirement for high dose steroids as well, aggravates all of this. I strongly recommend that Enid is treated with the JAK inhibitor, Tofacitinib, which has been requested to be added to the formulary at Noble’s Hospital.

’We use this drug extensively in England for rheumatoid arthritis where it can prove extremely useful. In the case of Enid, as she has failed on targeted biologic therapies, moving to targeted synthetic DMARD therapy as Tofacitinib is, is extremely logical and likely to be beneficial.’

Tofacitinib, marketed by drug company Pfizer under the brand name Xeljanz, blocks the activity of a protein inside human cells which can cause inflammation. It was approved for use on prescription by NICE in the UK in May 2018.

Enid and another five RA patients in the island have been waiting for the island’s drug approval authority, the Clinical Recommendations Committee (CRC), to give Tofacitinib the go-ahead here but so far nothing has happened.

Another RA sufferer, Linsey Durcan, 38, lives in Port Erin with her 13-year-old daughter, Amy.

Linsey, who comes from Scotland, was diagnosed with RA when she was just 19 and newly arrived in the island.

She says: ’I had moved here to be with my husband: a new job, new house, new life. Two months later I started having issues with my knee swelling. I hadn’t fallen or done anything to it.’

Linsey’s diagnosis was later amended to ankylosing spondylitis (AS) an inflammatory form of RA which causes spinal and peripheral joint damage and is characterised by flare ups which bring extreme pain. She has since also developed psoriatic arthritis and a further complication, iritis, or inflammation of the iris, which has caused her to lose the sight in her right eye.

She currently takes oral steroids, various painkillers and has weekly injections of Methotrexate one of the most widely used medications for treating inflammatory types of arthritis. When the pain gets really bad she takes oral morphine. ’But I keep that for the really bad days,’ she says.

Linsey adds: ’Over the years I’ve tried various tablets but it has got worse in the last two years and my flare ups are getting worse. This drug [Tofacitinib] is the next available option: I’ve exhausted everything else.’

She had to give up her job in an insurance brokers in 2018. ’The main thing for me is, I’m 38, so just finding something that can keep me going,’ she says. ’I should be working and doing things. I don’t want to be a burden on the health service.’

The delay in approving Tofacitinib is not thought to be cost-related: Enid’s monthly injections of golimumab cost more than £1,500 each, adding up to a six-monthly cost of more than £9,000, in addition to the other drugs she takes.

The average cost per patient for the first six months of Tofacitinib is estimated at just £4,050.60.

In September last year, Enid wrote to the complaints department at Noble’s Hospital about the delay. Her letter said: ’No-one in authority will take responsibility for allowing this drug to be prescribed on the Isle of Man and no concern at all is being shown to myself and others who are suffering intolerably because of this lack of action...

’I am now in the position of having no effective medication because I cannot tolerate the steroids and painkillers on a long-term basis due to their severe side effects, so I have run out of options. My health needs have become extremely serious and my life expectancy is reduced due to the lack of appropriate medication.

’My mental and emotional health are suffering with it all too but not just because of the pain and fatigue and feeling so unwell but because I am having to fight so hard to get the treatment. It feels so unfair that I am in such a position when I know it is within someone else’s power to allow me this drug and ease my suffering. I am really struggling to cope.’

The DHSC has set out its position on NICE-approved drugs not approved for funding in the island.

It said the situation needs review and a policy decision. However, to move to the same position as England has large resource implications - since there are a number of drugs we do not fund here, and new drugs are coming on stream year on year.

To enable a policy decision, DHSC has commissioned a review by a specialist team in NW England. This team’s work is nearing completion and it will provide an estimate of the resources required to bring us in line with NICE and an idea of how much additional resource will be required year on year.

It will then be for DHSC to determine whether the funding required can be found and to consider what priority should be given to achieving and maintaining parity with NHS England/NICE compared to all other calls on DHSC resources. The final report and cost estimates is expected in the next couple of months.

The department has also advised that in certain circumstances these drugs may be made available before this:

â?¢ If a clinical team believes a new drug, recommended by NICE, should not wait for the overall policy decision, that team can make a request for the drug to be considered through the usual assessment process (by the Clinical Recommendations Committee, through commissioning and to the DHSC board);

â?¢ If a clinician considers a particular patient has exceptional need for and capacity to benefit from a drug that is not routinely funded (compared to other patients with the condition who would also not be offered it under existing funding policy) then a request for individual funding can be made.