Withdrawal of Lidocaine MedicatedPatches

Andy From Sligo

Hi all, my son has bad Scoliosis (Curvature of the spine) and is in pain most days and waiting for his second back operation (which very long waiting list) - for the last 2 years he has found these self adhesive medicated patches called Lidocaine (I dont know if you heard of them) a Godsend for help relieving the pain.

Well, wife goes to get repeat prescription the other day from the doctors for them and the Doctor said this will be last box because they are only going to supply them to patients with shingles from now on (they were prescribed for patients with scoliosis and many other pains/ailments where local medication is needed) and suggested just to carry on taking paracetamol ... well the paracetamol dont touch the pain (might be OK for toothache or headache) and now my son is fretting because the lidocaine patches really helped relieve him of pain and he only has a few left and when they are gone they are gone.

What would others do or go about trying to change the doctor / HSE / or whoever it is deciding to withdraw them - of course it must come down to the HSE saving money because my wife enquired at the chemist how much a box of lidocaine (lidocain?) patches cost and I am sure she heard her correctly and they said it was around 200euro a box!! :eek:

He was supposed to be referred to a pain management clinic in April and he is still waiting for the appointment (long waiting list when wife asked about it at the doctors, same old story) and i think (when he does finally get an appointment) they are going to try cortisone injections for the pain.

So , yeah anyway about the patches - what options have we got now? - who withdraws them? is it the doctor/surgery/HSE and what chance have we got of them reversing the decision does anyone know?

Thanks.

Ocean Blue

Andy From Sligo wrote: »

Hi all, my son has bad Scoliosis (Curvature of the spine) and is in pain most days and waiting for his second back operation (which very long waiting list) - for the last 2 years he has found these self adhesive medicated patches called Lidocaine (I dont know if you heard of them) a Godsend for help relieving the pain.

Well, wife goes to get repeat prescription the other day from the doctors for them and the Doctor said this will be last box because they are only going to supply them to patients with shingles from now on (they were prescribed for patients with scoliosis and many other pains/ailments where local medication is needed) and suggested just to carry on taking paracetamol ... well the paracetamol dont touch the pain (might be OK for toothache or headache) and now my son is fretting because the lidocaine patches really helped relieve him of pain and he only has a few left and when they are gone they are gone.

What would others do or go about trying to change the doctor / HSE / or whoever it is deciding to withdraw them - of course it must come down to the HSE saving money because my wife enquired at the chemist how much a box of lidocaine (lidocain?) patches cost and I am sure she heard her correctly and they said it was around 200euro a box!! :eek:

He was supposed to be referred to a pain management clinic in April and he is still waiting for the appointment (long waiting list when wife asked about it at the doctors, same old story) and i think (when he does finally get an appointment) they are going to try cortisone injections for the pain.

So , yeah anyway about the patches - what options have we got now? - who withdraws them? is it the doctor/surgery/HSE and what chance have we got of them reversing the decision does anyone know?

Thanks.

There is a facility for the prescriber to make an application under an exceptional circumstances clause. Maybe enquire with the GP about this? Though they may have already decided not to go down that route if they have informed you they won't continue to prescribe.

Ocean Blue

Google HSE - lidocaine - circular and you will see the letter sent by HSE to doctors and pharmacists. You might find some useful information in it.

echo beach

http://www.hse.ie/eng/staff/PCRS/circulars/GP/032-2017-Reimbursement-of-Lidocaine.pdf

Their advice to patients is:

If you have further queries, you can contact the HSE National Medical Card Line at 1890 252 919.

I suggest contacting them and see what they say. If he has been using them he will be able to get supplies up to the end of November. This does sound like 'exceptional circumstances' but they should be able to tell you if your son will qualify. If so his GP will have to re-apply every 3 months.

Andy From Sligo

Thank you everyone for all your advice I shall get acted on that - hopefully is not all lost then, and maybe (hopefully) he will be classed as a special exception and carry on getting them now then - at least I am more clued up now thanks to all your advice.

Wesser

It is the hse not your doctor.
The patches are not licensed for pain outside of shingles.

Andy From Sligo

Wesser wrote: »

It is the hse not your doctor.
The patches are not licensed for pain outside of shingles.

oh right , is it a case that they were never licensed, or is it a new thing?

Andy From Sligo

not even sure what shingles is, will have to look it up - something to do with mumps or chicken pox isnt it and adults getting it. would there even be a lot of people in Ireland with shingles?

Wesser

No it is not a new thing it is an old thing. The drug company that makes the patches only have scientific evident that it works for shingles.
Doctors have been prescribing it for conditions other than shingles for many years (this is called 'off licence persribing).


Shingles is an adult form of chicken.oox, quite common.

Most people who have medical cards drastically underestimate the value of goods and services they receive under the scheme ie only paying 2.50 for a drug worth e200.

Interesting exercise for any one reading this who has a medical card : ask your pharmacist to tell you the true cost of the drugs you receive. ( paid for by tbe hse aka tje tax payer) Eye opener.

njs030

Andy From Sligo wrote: »

oh right , is it a case that they were never licensed, or is it a new thing?

A lot of medication is used off license meaning it's used for something other than its official use.
Lidocaine patches official use is -
"Lidocaine patches are used to relieve the pain of post-herpetic neuralgia (PHN; the burning, stabbing pains, or aches that may last for months or years after a shingles infection). Lidocaine is in a class of medications called local anesthetics. It works by stopping nerves from sending pain signals"

Andy From Sligo

amazing the high price - just wonder how the drug companies justify it . My lad thinks the patches are very effective where he puts them for his pain (normally puts one middle back and top of spine) associated with his scoliosis /kyphosis.

But 200eur for a box of 30 (thats 6.66eur per patch - ) and made by company called Grúnenththal (dont seem to be like a big medical well know company like pfizer or glaxo cline or someone like that, that i recognize in the mainstream name of medicines) its surprising there is no alternative cheaper clone on the market as I know the HSE/Doctors do like to supply these cheaper alternatives these days. Maybe no-one else makes these patches.

Wesser

The justify it because they can .
It is still on patent and therefore they can charge whatever they want. Drugs stay on patent for 10 or 20 years after they are created. Legally.... They have a monopoly until it comes off patent.

Cross ref : orkambi for c.f. sufferers. They can charge whatever they want because they are the only company that makes them. Cue : public outcry and phone calls to Joe if the hse says that can't afford it. Or posts on boards from andy who is concerned about his son and wondering if it is his GP S fault
End result : tax payer coughs up and is denied other vital services e.g. emergency services and the drug company laughs all the way to the bank.

Andy From Sligo

Wesser wrote: »

The justify it because they can .
It is still on patent and therefore they can charge whatever they want. Drugs stay on patent for 10 or 20 years after they are created. Legally.... They have a monopoly until it comes off patent.

Cross ref : orkambi for c.f. sufferers. They can charge whatever they want because they are the only company that makes them. Cue : public outcry and phone calls to Joe if the hse says that can't afford it. Or posts on boards from andy who is concerned about his son and wondering if it is his GP S fault
End result : tax payer coughs up and is denied other vital services e.g. emergency services and the drug company laughs all the way to the bank.

Thats a little unfair, I did say that the doctor said they could'nt supply it any more but a couple of lines down I did write how could this be reversed with the GP/HSE

Wesser

See all.the extra work and hassle that this creates for GPs.
Patient wonders if it is his GPS fault
Go has to defend himself

Phone calls back and forth to patient and pharmacist
For each patient that is in the drug.
This might be a 100 patients.
Back and forth phone calls ++++ all the time the patient thinking that it is the gp who.is being sneaky . Online applications for 100 patients every 3 months.
Time consuming and tedious and taking the gp away from.what they trained to do....... See patients!!!! Instead spendu g their time at a computer screen......Increasing paperwork in an every growing heavy beurocracy called the hse.

Wesser

Andy From Sligo wrote: »

Wesser wrote: »

The justify it because they can .
It is still on patent and therefore they can charge whatever they want. Drugs stay on patent for 10 or 20 years after they are created. Legally.... They have a monopoly until it comes off patent.

Cross ref : orkambi for c.f. sufferers. They can charge whatever they want because they are the only company that makes them. Cue : public outcry and phone calls to Joe if the hse says that can't afford it. Or posts on boards from andy who is concerned about his son and wondering if it is his GP S fault
End result : tax payer coughs up and is denied other vital services e.g. emergency services and the drug company laughs all the way to the bank.

Thats a little unfair, I did say that the doctor said they could'nt supply it any more but a couple of lines down I did write how could this be reversed with the GP/HSE

No don't take it personally!!! What I mean is that patients do think it is their GPs fault. I don't mean you specifically.

Andy From Sligo

Wesser wrote: »

No don't take it personally!!! What I mean is that patients do think it is their GPs fault. I don't mean you specifically.

oh, right sorryto jump down your throat, i only took it personally because you mentioned me by name you see.

i do feel annoyed having to complain because the medical card system in Ireland is a godsend really

- I know we are indeed lucky to live in a country like Ireland which at least has some sort of public health service for people who are on low income and cannot afford private treatment or medicines unlike some other countries in the world even if sometimes they are making cutbacks or withholding certain medication or delaying operations

alibab

The HSE are right to do what they are doing . These patches only work on nerve pain post shingles. Drs in hospitals and gp were prescribing them for every ache and pain in particular joint pain were they are ineffective. It's like a placebo effect . Drs were brought on fabulous days out and weekends away and told these were they best thing ever to cure all localised pain but this has no been disproven and the HSE are cracking down . I have used them with people and would say the majority have told me they do not work . I have also tried them myself for lower back pain . Of course they didn't work as were not been used for correct purpose. Ask your gp for alternative options on pain relieve if regular paracetamol not working .

palmcut

Pharmacists and GPs are not to blame for this decision. This is a HSE decision and is based purely on economics.
Pain is very difficult to manage. Many patients find that Versatis does relieve their pain where other pain killers failed. Off licence use of drugs is quite common.
The only way to get this decision changed is to write to the Minister of Health and to contact your TD.

From the 1st of November 2017; approved patients will only be able to receive one box of patches per month for 3 months. This cohort of patients will have to have had shingles and will have to have been treated for shingles prior to getting approval for the Versatis. The GP will have to seek special approval if treatment is to continue beyond 3 months. The feeling that I am getting is that the HSE will refuse to approve treatment beyond 3 months.
Perhaps the manufacturing company needs to demonstrate that the patches are effective for other types of pain.

Andy From Sligo

alibab wrote: »

The HSE are right to do what they are doing . These patches only work on nerve pain post shingles. Drs in hospitals and gp were prescribing them for every ache and pain in particular joint pain were they are ineffective. It's like a placebo effect . Drs were brought on fabulous days out and weekends away and told these were they best thing ever to cure all localised pain but this has no been disproven and the HSE are cracking down . I have used them with people and would say the majority have told me they do not work . I have also tried them myself for lower back pain . Of course they didn't work as were not been used for correct purpose. Ask your gp for alternative options on pain relieve if regular paracetamol not working .

I might be wrong , but i would say my sons pain comes from near his spine with his Kyphosis - he reckons they help anyway, not totally getting rid of the pain but he feels better with them on and be able to be more mobile.

I have been suffering myself for the last few years I have a couple of slipped discs and lower back pain with sciatica on and off, and have to admit on a couple of occasions (not many only when other pain killers dont work) on asking him if I can borrow one or 2 of his patches and i have found them to work too at easing the pain. Maybe its because it blocks nerve pain?

Andy From Sligo

palmcut wrote: »

Pharmacists and GPs are not to blame for this decision. This is a HSE decision and is based purely on economics.
Pain is very difficult to manage. Many patients find that Versatis does relieve their pain where other pain killers failed. Off licence use of drugs is quite common.
The only way to get this decision changed is to write to the Minister of Health and to contact your TD.

From the 1st of November 2017; approved patients will only be able to receive one box of patches per month for 3 months. This cohort of patients will have to have had shingles and will have to have been treated for shingles prior to getting approval for the Versatis. The GP will have to seek special approval if treatment is to continue beyond 3 months. The feeling that I am getting is that the HSE will refuse to approve treatment beyond 3 months.
Perhaps the manufacturing company needs to demonstrate that the patches are effective for other types of pain.

yes, and i am no medic but i would say they would help a lot more other pain rather than just shingles alone - of course though it is false economy for the HSE if they are supplying it to patients and these patients have found no relief from using them, then yes of course they should be withdrawn for those type of patients and another alternative given.

So far I have emailed the FF shadow disability minister last sunday and yesterday an Independent local councillor said she could raise it at Dail level if i wished her too.

Blimey theres only 30 patches in the box if you wore one a day that would be a months supply but if its only every 3 months that 30 are supposed to last they would have to be eeked right out. I have known my son on many occasions to get relief by having one patch at the top of his spine and another middle back and a few days a week when he is really bad

LegacyUser

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