Ok, bear with me. This is going to get confusing. Why? Because I am going to try and explain why some people with severe RA cannot access expensive biological medications in Australia.
Why is it hard to get these drugs? Because they are expensive. I would think that the cost of supporting the disability that Rheumatoid Arthritis causes is more expensive than these treatments… treatments that offer hope of remission and a normal or near normal life…But hey, I don’t make the rules….
In Australia, eight biological medications are available under the Pharmaceutical Benefits Scheme (PBS) which means their cost is subsidised by the government. IF you qualify.
I have been told that the cost of unsubsidised treatment with these drugs is between $1200 to $2000 per month. Obviously out of reach of the mere mortal.
The medications are abatacept (Orencia), adalimumab (Humira), etanercept (Enbrel), golimumab (Simponi) and tocilizumab (Actemra),certolizumab pegol (Cimzia), infliximab (Remicade), rituximab (Rituxan/mabthera).
Over the course of your life you are allowed subsidised treatment with FIVE biologicals. If the first five you try don’t help, you’ll have to pay for the others yourself. As previously stated, pretty much impossible for the average person.
Additionally, methotrexate at a dosage of at least 7.5mg per week must be taken with abatacept (Orencia) , golimumab (simponi), infliximab (remicade) and rituximab (rituxan) therapy. So too bad if you can’t tolerate methotrexate. You’re down to four options now.
That’s if you even qualify for treatment.
As stated before, conclusive blood tests for rheumatoid arthritis don’t exist. Blood tests are indicative and interpreted in context with other results. See Rheumatoid Arthritis diagnosis for more info.
For me, the only ‘proof’ I have that I actually DO have rheumatoid arthritis is in my scans. Synovitis is visible on nuclear bone scans and ultrasound. Positive, physical evidence. Indisputable. Relevant in the current diagnostic criteria for Rheuamtoid Arthritis. But it’s not part of the qualifying criteria for biologics in Australia.
I clearly have rheumatoid arthritis, or at least a form of inflammatory arthritis, but the criteria only take blood work into consideration, not physical evidence.
Previously you needed a positive RF (Rheumatoid Factor). This criteria was removed in 2005, possibly in deference to the fact that 30% of people with active and obvious rheumatoid arthritis do not have a positive RF. This is often referred to as “Seronegative Rheumatod Arthritis”.
Seronegative Rheumatoid Arthritis is considered to be a milder, less serious form of the disease. I have met enough people with severe Seronegative Rheumatoid Arthritis to realise this is not the case. Equally I have met people with a positive RF who have no signs of disease whatsoever.
So removing RF from the disease criteria was a positive step. Gives me hope – criteria can be changed!
So, the criteria for treatment are a count of tender and swollen joints – determined by the rheumatologist squeezing your joints and seeing how much you flinch. I don’t flinch. You can put a cigarette out on my hand and I won’t flinch. I know someone that you could brush their hand lightly with a feather and they would flinch. They would even cry on cue if you asked them to. Pretty flawed test I think.
Then you need to submit a blood test. Your CRP (C-reactive protein) or ESR (erythrocite sedimentation rate) are both indicators of inflammation in the body.
Sounds fine, right? Except that they are not very accurate tests. Something as simple as the common cold can cause an elevated ESR or CRP. Conversely some people with severe and active inflammatory arthritis *always* have ESR and CRP in the normal range. Mine is mildly elevated from time to time.
Also a pretty flawed test I think!
In addition to all of this you MUST have been on methotrexate for 3-6 months at the maximum dose of 20mg per week. Except in the case of intolerance or toxicity. Methotrexate can cause liver damage and lower your white cell count. This is considered toxicity. Intolerance is experiencing severe side effects. Again, there is a criteria and points system. Medicine is like that. All about criteria and points. Not at all about people and pain.
Severe depression is not considered a bad enough side effect to class as intolerance. It is classed instead as non-compliance.
In addition to having failed methotrexate you need to have failed two other DMARDs – sulfasalazine, leflunomide, azathioprine, plaquenil or intra muscular gold.
Do all of that and then you win the prize – a new medication with a whole host of dangerous side effects that *might* put you in remission. If that one fails you can try four more. Then what? Five strikes and you’re out, apparently.
Too bad if one of the other three was the magic combination for you.
Now I’m not 100% sure that all of the above is completely correct. Try googling – you will find not a lot of information. Try asking a rheumatologist..they will likely um and ahh…they will not discuss it. I have heard other RA patients say that the criteria is so complicated that even most doctors don’t understand them.
This is the best information I have been able to get. The actual application form is here.
On reading through this, I think I have qualified. I have failed methotrexate and another DMARD after 3 months of treatment (sulfasalazine). I can explain my normal CRP with my prednisone use.
It could be done. Some rheumatologists do it. I love my rheumatologist – he has been great to me. And his registrar has done her best. But I now have an appointment booked with someone else. A rheumatologist who is known for fudging the system. Cheating? Maybe.
Sometimes you have to.
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