Monday 19 February 2018

When medication costs

Autistic boy leans on a swing in a cold playground - when medication costs

No one wants to have to medicate their child. No one wants to medicate their child if they could do something else.  And certainly no one wants to use medication on their child that doesn't work well especially if it's because it's cheap.

Nearly two years ago I visited a clinical psychologist to seek medication for Anthony for his ADHD. It was not something he went into lightly.  Anthony was seven years old and struggling with his ADHD - possibly more so than his autism diagnosis he had since he was four years old.

At one point he found his difficulties so hard, that he said he wanted to die.  Understanding his diagnoses and accepting who he was helped him mentally, and soon medication would also help him with his daily challenges too.

Anthony started on a long process of trialling types of methylphenidate, a controlled drug, to help him with his ADHD. As a controlled drug the dose started extremely low and we tried various types of releases (slow, extended, instant etc).   Over the next year, various doses, brands and releases were trialled and finally Anthony was dealing less with his ADHD and coping better with the challenges around his autism.

He still finds many things difficult, including school, but is able to understand better how he feels, what's he's have difficulties with and what he wants to help him.

We had finally settled on a brand and dose that we thought was right.  He felt better about himself, about his future.

As part of a shared service agreement and because Anthony is on a controlled drug, we get a monthly prescription that I have to request and collect from our GP every month.  One day I went to collect the prescription and found instead of our regular Brand A, we'd been given a prescription for Brand B.

I doubled checked with the GP - and was assured the medication was the same. With only a few days of medication left, we filled the prescription for the next month.

Anthony was more erratic for the next month, so when his medication need renewed, I requested our original Brand A.  Guess what I got?  Cheaper Brand B.

The next month I stood in the GP surgery until a new prescription for the original brand was eventually provided.   Every new month became a battle.  Each month, I only have a few days to request, collect and fill the prescription for Anthony.  I was now finding these days a battle and became stressed each time as I requested Brand A over and over again.

Eventually it came to our biannual clinical psychologist meeting and mentioned the difficulties to them.  I was not the only parent having difficulties.  Some had found the cheaper brand less effective. Some suggested they were upping their dose as a result.   Anthony is already on a high dose for his height, age and weight and I wasn't keen on giving him more with a different brand.

After this I talked to my GP with information I'd got from our clinical psychologist.  And today, for the first day in months, I turned up at my GP and found a prescription for our original brand.  It was still with a note asking us to monitor that this is still the better medication for Anthony - but that makes sense when choosing between a more expensive or cheaper brand.

What didn't make sense was changing medication without notification.   All the ups and downs over the last months could have been avoided with better communication and trialling the new medication properly.  And my heart feels heavy for those with other conditions that aren't getting the medications they need because they are expensive and how they may be struggling.

But for now. I'm glad that we, at least, are back and course.  And pleased that my son's welfare is back on track, even if it is with a more expensive brand of medication.  He is worth it.

Supporting this week’s #wetalkmakaton sign of the week ‘To think


  1. It must be so difficult to have your little one feel so bad, that they would say they want to die. My goodness, my heart goes out to you. Medicine, doctors, costs and bottom lines should not be more important than the people who need them, like your beautiful little one. I am glad you have things sorted out, and I only hope for a smoother course ahead. #kcacols xoxo

  2. they cant just change them can they? i get that some branded stuff is the same as non branded but if there are def differences, surely they should be notifying you :( #KCACOLS

  3. I've never understood why so many outside forces have so much control over heathcare. Its really quite maddening. Hope its smoother sailing in the future, we shouldn't have to fight so hard to get what our children need #KCACOLS

  4. It must be so hard to see your little boy struggling without having to cope with unnecessary setbacks, i’m glad you managed to get the original brand prescribed eventually, although it shouldn’t have to be such a battle to get what’s best for your child. #KCACOLS

  5. I think it is awful it was changed without your consent, I can't imagine how hard it was to watch him struggle with the different medication/ It is so sad that things like this come down to cost over the benefits to the patient. Hopefully you won't have to continue fighting for you need for him. Thanks so much for linking to #KCACOLS. Hope you come back again next time.

  6. They shouldn't be allowed to change the bran without letting you know! Glad you got it all sorted though. #KCACOLS

  7. It's bad enough having to deal with the actual difficulties (due to the adhd and autism) without having to fight the doctors over which brand of medicine you should be getting... especially since as you say, this is something that has been trialled out with great care, to find the right substance and dosis. I hope you won't have to fight with them over this again. x

  8. Wow, this struggle sounds horrible. I know here in the Netherlands, we have something called preferred treatment, where insurance companies are allowed to decide which brand they prefer and only cover that brand. They can even switch preferred brands as often as they want I believe, meaning you'll get different pills often. There may be exceptions when for example a patient is allergic to an additive, but I find the whole thing rather annoying. I mean, I understand insurers have an interest too, but like you describe, some brands just work differently even if they have the same active ingredient. I'm so glad now Anthony finally got his proper medication brand. #SpectrumSunday

  9. So sorry you've had to fight for this - sounds stressful. Hope you continue to get the best medication you need without any more battling. #spectrumsunday

  10. Oh my goodness, what a battle! We've only just begun our medication journey. It was not taken lightly (it's taken us 10 years to finally try) and I can't imagine having to turn around and fight for the right medication just because it's more expensive. Thank goodness your GP finally saw sense - I hope it's easier for you from here on in.

  11. It's such a shame when a child's health and wellbeing is put at risk because of budgets. I hope your GP continues to offer the right brand without problem now. #SpectrumSunday


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