HSE decision puts pain firmly on the agenda
“At the moment, I am going through a bad inflammation,” Linda McNeill’s voice rasps as she describes the pain that racks her body.
“I was diagnosed with fibromyalgia 10 years ago, then lupus a year after that. I have been in pain for 13 years, it took them a few years to find out what was causing it. Lupus is a hard illness to diagnose,” she explains to the Celt.
Short for systemic lupus erythematosus (SLE), lupus is a chronic autoimmune disease that occurs when the body’s immune system attacks its own healthy organs and tissues. It often take years to diagnose.
The Ballyjamesduff resident is making the case for pain sufferers who have been told that the pain relief patches they use as part of their treatment are no longer covered by drug payment or medical card schemes following a recent HSE decision to restrict their access.
The HSE judgement means the schemes will only cover the cost of Versatis patches if the patient is experiencing post-shingles pain. Otherwise the patient’s GP has to send in an application for them to be considered as an exception and chronic pain sufferer.
For Linda not having access to the treatment is causing significant hardship:
“It attacks my skin, my hair falls out, it attacks my joints and muscles. It started when I was pregnant with my last child. At first I thought it was pregnancy related. I was getting shooting pains in my arms, legs and my joints. I thought it was trapped nerves,” she explained.
“Initially the medical team ruled out a number of possibilities. The MRI scans came back normal. They did a skin biopsy and I was diagnosed with lupus. They tried me on different medication. They tried ketamine infusion to see would it ease the pain, Lyrica and Neurontin. I am on Lyrica at the moment [since the HSE withdrew provision of Versatis from medical card holders]. It is a pain medicine for neurological pain.”
The pain that Linda is coping with stems from her diagnosed conditions. The fibromyalgia she has to deal with causes widespread chronic pain, as well as related symptoms including fatigue and reduced physical function.
She has been living in Cavan 10 and a half years, and has been using the Versatis patch since 2011. “After I was diagnosed, I was referred to the pain clinic. They tried different medications, I was prescribed Versatis patches a few years ago from my pain consultant Dr Hearty in the Mater Hospital. They made it possible for me to get through the day as I used one on my worse affected area daily. Our family has a means tested medical card due to the low household income.”
The patch, primarily used by patients suffering with post-herpatic neuralgia, a condition linked with shingles, became more difficult to access after the HSE reviewed how the drug was prescribed.
“It makes a difference to the worse affected areas. I could be in so much pain that I could not lift up my arm; with the Versatis I would be able to use it. My joints inflame, I would flare up a couple of times a year. I am in pain every day but it’s worse when I have a flare up,” she said. Linda was coping with one of the flare ups when she was contacted by the Celt.
Speaking with audible discomfort, she described: “It affects your whole body. I am really struggling with pain since my patches were stopped.”
The day before Linda heard that the application by her doctor to be considered an exceptional case was declined by the Medicines Management Programme (MMP): “I have to go back and get vitamin B12 injections. I am going to see if he will appeal it again. I am told that the appeals process is very complicated and takes an hour and a half to fill in the form.”
She now faces a future where she will have to return to different medication: “There is no cure for my illness. I’m only 44 and I am going to have it for the rest of my life. I need them [the Versatis patches] to get through my day. I could never afford them, if I could afford them I would. We don’t have a lavish lifestyle, I don’t feel like going out,” the mother of four says.
Linda is on an extensive list of medication to treat both conditions. This includes Nexium, Centrine, Lyrica. Nortriptyline and Plaquenil, Solpadeine, as well as epidurals and ketamine infusions.
Taoiseach Leo Varadkar said the withdrawal of the pain relief drug Versatis by the HSE from some recipients was because of patient safety. He said the patch is prescribed 10 times as much per capita in Ireland than in the UK for conditions it is not licensed for. This has resulted in the withdrawal of the Versatis patch on the medical card from 25,000 chronic pain sufferers in Ireland. Chronic pain affects 13% of the population.
The Ballyjamesduff mother is appealing for support: “My husband drives to Dublin Monday to Friday to work for the last 11 years to provide for his family. We have four children, ages 19, 17, 13 and 12. I can’t work as I can’t hold down a job due to the pain. We have only one income coming into the house for the six of us. If I could afford it I would pay for it myself.”
Linda is a member of ‘Patch Us Back Up’ a group on of chronic pain sufferers who are looking to lobby Minister Simon Harris to rescind the HSE decision and have the patch, which costs €180 per box of 30 patches, restored to the Medical Card and Drug Reimbursement Scheme list.