The package of Hep C wonder drugs which I usually refer to as ‘the new treatments’ have been available on the PBS for nearly three months now. Health Minister Susan Ley boasted that they would be available to ‘every single Australian patient no matter where they are’ but – even after an excusable period of confusion at the outset – there remains some considerable bewilderment as to how to access them.
In this post, I’ll do my best to describe the rather simple series of hoops you’ll need to jump through in order to get treated. (NB – A simplified step-by-step version will soon appear elsewhere on the HRV website and will link to here.)
Whether you know you have Hep C or not, the first step will likely involve a visit to your GP and subsequent blood tests to ascertain whether you even have the virus, and, if so, which of the six or so genotypes (and 70 or more subtypes) you are hosting.
Statistics predict that if you caught the bug in Australia your bloods will most likely reveal it to be genotype 1 (57%) or 3 (37%). Genotype is one of the most important indicators used for deciding which selection of drugs will comprise your treatment.
Importantly, your bloods will also reveal how much of the virus you are carrying (viral load) and the amount of inflammation in your liver (measured by the liver function test). If you are unaccustomed to venesection (blood-taking) I guarantee you will be astonished by how many phials you will surrender of your precious bodily fluids.
Another thing you’ll need before you start treatment is a simple ultrasound of your liver and/or a non-invasive, ultrasound-based FibroScan to determine your level of fibrosis (or ‘scarring’). Your GP should be able to advise you where to access these tests.
(Not too far down the track I will dedicate an entire post to how the pathology works. I know many people would simply rather not know, but for those with a gruesome cast of mind (like your correspondent) it’s fascinating and gives one a sense – however illusory – of having some control over the disease and its management.)
When you make this initial GP visit, do your best to bring any previous test results you may have – even if it means requesting them from previous doctors or clinics. The more data you bring the more likely it will be to grease the wheels of the medical bureaucracy. If at all possible, choose a doctor who is familiar with Hep C. Physicians who prescribe pharmacotherapy (methadone and bupe) are considerably more likely than a vanilla doctor to be familiar with the terrain – and to get you over the potholes in a timely manner.
Basically, a little initiative will get you a long way.
My first four treatments occurred over 15-20 years and each time my doctor referred me to the liver clinic within the gastroenterology department at The Alfred – (though it could be any of the major urban and regional public hospitals (Royal Melbourne, Western, St Vincent’s, Austin, Box Hill etc.). This model is still used, but the normal waiting period (three to six months) has been stretched over recent times by the large numbers of people already on or seeking treatment. I am told that Box Hill is currently the best at three months.
Perhaps you’ve had hep for many years and this extra wait is no biggie in the greater scheme of things. That’s fine. But there are others, like myself, who cannot wait a second longer to eliminate the wretched alien killer spheres from my system. (And others of course for who the disease has progressed sufficiently for timely treatment to have become a necessity. If you are dangerously ill, you will, of course, be moved up the appointment list.)
For those who want treatment sooner, there are options.
An increasing number of specialist pharmacotherapy/community clinics have a visiting gastroenterologist who can handle the entirety of ones treatment. However, this path to getting HCV-free is also getting clogged by the many seeking a cure. This is how I access my treatment – my buprenorphine doctor is in one room and my hep doctor literally in the next. But my clinic in St Kilda is overloaded and has, for the time being, ceased accepting new patients.
Fortunately, this model of community-based care will become more prevalent over the following months, with hospitals/clinics working to establish and operate such outreach services and more GPs providing offering treatment.. Of course, this will take time – with all sorts of inevitable legal and insurance-related issues in play – but those involved are looking to the long term and do not wish to ‘build on sand’ when founding a model they hope will operate until every one is treated.
Because intravenous drug use is so closely associated with Hep C infection, dedicated pharmacotherapy clinics are a likely place to find this style of treatment which will, certainly, be faster than the hospital clinic route. (I’ll point you to a list of clinics providing these services when I can.)
There is yet another, quicker option, though thus far it has been slightly problematic
The new drugs are classed as both Section 85 (S85) and Section 100 (S100).
S85 drugs can be obtained through any prescribing physician – the principal feature being that each prescription must be officially logged with the PBS. (Understandable. Given the horrendous cost, one can easily imagine the Health Department being leery of any sort of fraud.)
The S100 classification is generally reserved for in-house use by institutions like hospitals and jails.
I have heard that this dual classification may have confused some doctors into thinking they are unable to prescribe – but by now, surely, most will have worked it out. I have also heard stories of doctors claiming they require some further qualification, or must attend a course in order to prescribe the new treatments. Well, as I understand it, this is false. Perhaps some are wary of getting involved with such new and expensive merchandise, I don’t know …
I’ve enquired of enough health professionals to be quite certain that, if you have a willing practitioner, they can see you through your treatment themselves. Indeed, the GP who prescribes my Suboxone is picking up the slack from the overworked gastroenterologist who visits the clinic. There are other GPs too, in Melbourne at least, who are au fait with the process.
A doctor must simply assemble your test results and submit them to a gastroenterologist in good standing who will advise and sign off on the appropriate treatment. You do not have to attend. (Obviously, it is an advantage to have a GP who is familiar with the disease.)
After that it’s just a question of ringing the PBS, obtaining an authority number and writing the scripts. Then you visit the pharmacy, fork out a few dollars, and begin what will, hopefully, be your cure. (With a concession card each script is $5.20.)
The drugs are becoming available at more and more pharmacies as they satisfy themselves that they cannot get stuck with the huge bills. Do note that such medications are rarely kept in stock, and that you will have to wait a day (usually) for the order to arrive. (This is if you are fortunate enough to avoid supply-chain problems, which seem to be ongoing but intermittent.)
Again, if you want a simplified, point-by point version of this post, one will appear on the main HRV site shortly. When it does, I’ll post the link below.
The Golden Phaeton
This link will take you to Hepatitis Victoria’s Hep C Treatment page, from where you can access a list of participating clinics and hospitals.
This link will take you to a list of GPs who are willing to dispense treatment, however it may not be completely up to date. Hopefully, a more accurate list will be forthcoming.