Testosterone: suffering the system, not the medication

Woohoo! I’m on a four month posting from Australia to Ireland, courtesy of my employer. I’ve just collected my latest Testogel medication from a local pharmacy and I’m excited!

Why the excitement? Well, here’s a little background: like almost all adults with intersex conditions, I’m infertile and I need HRT to help maintain my weight, mental and physical stamina, my libido (I’m still human) and prevent osteoporosis. Thankfully, hormone requirements after diagnosis tend to be stable: once you’ve found something that works for you, it’s ok to stick with it. I like testosterone gel.

I had to obtain a prescription from a local doctor, but it’s valid everywhere in Europe with no strings attached. It’s for 5 repeats, and I can arrange a repeat script with just a phone call to the surgery. I’ll be in Spain on holiday when I next need a repeat, and I can use my Irish prescription at a Spanish farmacia. Bliss! I think I’ll do that just for the sake of it! After years stuck in a web of rules and regulations in Sydney, this feels damn good. Making sure that I’m able to maintain my HRT regime has been a lot of hassle, thanks to Australia’s treatment of male-appropriate HRT.

So what’s the story back home in New South Wales?

Well, documentation isn’t a problem. I have plenty of original documentation that checks out in both Australia and Ireland. Australian legislation is the problem, as there’s something of a moral panic around the male hormone.

At both state and federal levels, legislation is designed to protect the community against addictive, mind-altering substances and to protect sports against doping. But it treats people with intersex conditions – lifelong, ‘chronic’ conditions – as collateral damage. It’s not written with HRT and us in mind, and so it makes us keep jumping the same hoops, over and over and over again.

So what are the rules?

The federal Schedule of Pharmaceutical Benefits restricts testosterone prescriptions to 6 months. Private scripts are the same. Most prescriptions are valid for 12 months.

PBS requirements stipulate a minimum repeat interval of 20 days. It’s not possible to get a couple of repeats in one trip (although there does seem to be some way of obtaining early repeats if I could have figured out how, and if it wasn’t overruled by a State requirement).

In New South Wales, pharmacies are required to retain the original prescription on presentation. It’s not possible to get a repeat prescription filled from any other pharmacy, so travelling or relocating intrastate, let alone interstate or overseas, is restricted by a need to return to an original pharmacy every minimum 20 days for 6 months. This restriction applies, effectively, lifelong.

Imports, including re-imports of Australian-prescribed, PBS-funded medication taken on a trip overseas, are subject to an application for a permit on each occasion. Import permit applications oblige a traveller to detail “planned arrival and departure dates in Australia and the country/s you are travelling from and returning to”.

Common sense rules while travelling in Europe and elsewhere suggest carrying original packaging and the original prescription. Unfortunately, NSW prescription retention rules make this impossible to comply with easily. I had to phone my endocrinologist and persuade him to give me a new, private script – just to deal with the NSW script retention rules.

Unfortunately, I’ll have to contact him again for another letter before I apply for a current import permit. My last permission was dated 15 June 2005 and, unusually, was valid for a year – this was after some negotiation and an endocrinologist’s letter stating that I need to remain on the medication for the rest of my life. At the time, this felt like a major achievement! Since it expired and I haven’t, I’ve not felt so impressed.

So what does this mean?

OII Australia believes that these requirements:

  • combine to dramatically limit the freedom of movement of people with intersex conditions.
  • are intrusive, effectively requiring us to submit our international travel plans to the government for approval for the rest of our lives.
  • discourage compliance with medical treatment itself. It’s easier to relocate or travel with insufficient medication than it is to obtain and carry an appropriate quantity – I’ve done so and, frankly, it’s not good for my health.
  • overmedicalize people with intersex conditions, necessitating overly frequent trips to endocrinologists and other doctors, to obtain repeat prescriptions for stable medical conditions.
  • increase medical costs for both patients and Medicare Australia.
  • collectively treat men with intersex conditions as potential black marketeers or steroid abusers.

We believe that the federal and state governments need to revise the legislation regarding HRT for people with intersex conditions to make them patient-centred, appropriate and lightweight. Like MPs would prefer to be treated if they were on HRT themselves.

After a civil servant’s reply detailing the legal obligations that I must comply with as a consequence of my medical condition, I’m now on my second wave of angry letters to government ministers. Wish me luck!

Update

The response from the Department of Health and Ageing