'It's a living Hell, you're just existing' - chronic pain patients on Versatis patches controversy
Chronic pain patients are missing out on precious family moments and don't know how they'll pay for medicine after Versatis patches were removed from the Drug Payment Scheme, a representative group has said.
Around 25,000 people were affected when the patches were removed from the scheme in December following a review and some have said that their health and quality of life has rapidly gone downhill since.
Barbara Donehy (45), who is a founding member of representative group Patch Us Back Up, has been suffering from chronic pain since a car accident four years ago, she has undergone two back surgeries and is waiting for another to have a spinal cord simulator fitted.
She said that the patches allowed her to go about her day-to-day life.
Barbara, who is from Rathdowney in Co Laois, told Independent.ie: "Chronic pain is unbelievable, it's a living Hell, you're not even living, you're just existing day-to-day.
"You've no life because you're just constantly trying to ease the pain.
"The patches didn't take away the pain but they eased it enough for me to drive, I could get my children to school or to go to the shop, I can't drive using other medication available as they are ophiate-based so I wouldn't pass under the new drug-driving laws.
"I'm just housebound really now, it is isolating."
Barbara is planning to use the appeal process to request that she can get the patches under the Drug Payment Scheme, otherwise she's worries about how she will pay for them.
The mum-of-three said: "I go through two boxes per month, so it would cost me €320 per month, as well as the €144 I already spend on other medication.
"I don't know where the money will come from but I'll have no choice because I need them, I'll be spending over €450 every month just to survive really, it's a huge worry."
Barbara set up the Facebook group Patch Us Back Up with four other women earlier this week and within three days they have garnered over 1,400 members.
Another Patch Us Back Up representative is Jennifer O'Meara, who has been using Versatis patches since September 2015.
The 39-year-old has Maigne's Syndrome, a type of nerve and muscle damage.
Jennifer, who is from Kilkee in Co Clare, sees a pain specialist and has nerve blocking treatment which essentially stops the pain signals from travelling to her brain and gives her relief for up to three months.
She was relying on the patches in-between treatments and said she has already felt the decision to withdraw them impact on her health.
"With the patches I can stand, walk, do things with my kids, I got really good results from them.
"If I knew I had to stand for a long time or travel I would straight away use the patches.
"On a bad day just sitting down I could hit an eight out of ten on the pain scale, standing up it would reach ten quickly, with the patches I'm more like a three.
"The alternative is opiates, which make you sick and drowsy and lead to constipation, so you need to take other medicines to counteract that.
"The patches helped me to do things with my children, to do things around the house, at the moment I feel like I'm stuck between a rock and a hard place.
"I absolutely feel like I'm missing out on moments with my children, when the procedures are wearing off I can't sit in the cinema or go bowling or even go fishing near our house," she said.
Ms O'Meara also said that she is hoping to appeal the decision, otherwise the patches will cost her €396 per month and she said she is already trying to save for health insurance so she won't have to face lengthy waiting lists for services.
She has spoken candidly about how the constant pain can take a toll on you.
Jennifer said: "I don't use any kind of a walking aid and to look at me you'd probably look fine, I try and put on a brave face.
"It's when you come home and close the door that the tears from the pain come, that's the frustrating part."
Professor Michael Barry, National Clinical Lead at the Medicines Management Programme, said that he feels that the health service was spending too much on the patches and they were being used to treat conditions that they weren't developed for.
Speaking on The Claire Byrne Show on RTE One, he said: "We are paying €36 million for a particular product where in many cases there is very little evidence to suggest that it is beneficial.
"The issue is that at a time when we are struggling to pay for cancer drugs, at a time when we're looking at people in Accident and Emergency on trolleys and we're told it's about resources.
"I think it's very hard to justify spending millions when there are some indications that it simply doesn't work."
Barbara called the decision a "cost-cutting measure" and said the patches showed real results.
"It's frightening, it is a cost-cutting measure, it was costing €36 million per year so we're worried what could be taken off us next.
"You don't have many options when it comes to pain, if you're having a really bad day you can't leave the house, if you have a good pain day and decide to make the most of it and leave the house you'll pay for it tomorrow.
"Sick people shouldn't have to fight for their medicine, if 25,000 people are all saying that something is working then we can't all be wrong," she said.
A HSE spokesperson said that the "this change was introduced due to the drug being inappropriately prescribed by condition and duration."
They said: "Versatis is a topical, locally acting anaesthetic product and the evidence suggests that the risk of side effects is low with this treatment.
"Prescribing trends in Ireland from 2013-2017 were not in line with expectations based on the licensed recommendations, which demonstrated that prescribing practices were not in line with the clinical evidence for use.
"Utilisation in Ireland was noted to be out of line with other jurisdictions (other European countries) where prescribing formularies are often in place to guide and monitor appropriate prescribing.
"Versatis is only licensed for post herpetic neuralgia (PHN) pain; there is no published clinical evidence for its use in other pain scenarios.
"The use of medicines “off-label” (outside the licensed indication) should only be considered in exceptional cases of unmet clinical need when licensed alternatives have been exhausted.
"From the reimbursement applications processed to date, it is clear that this patch is being prescribed for conditions that are very unlikely to respond to a product of this nature.
"There is no clear scientific explanation for the benefit of a locally acting topical therapy for generalised and widespread pain. It must be appreciated that there can be a significant placebo effect.
"A placebo effect is a well-known phenomenon in the field of therapeutics and may be relevant here."
They added that GPs and pharmacists were notified about the change in August 2017 and were also sent tips about suitable alternatives.
The spokesperson noted that the appeals process is available to anyone who has issues with the change.
"The Medicines Management Programme has dealt with a number of appeals since this initiative was rolled out.
"At a time when the HSE is struggling to fund cancer medicines, it is logical to identify those areas of prescribing which are not evidence based or cost-effective," they said.
For more information or to sign the Patch Us Back Up petition, please visit here