Here’s my hat, I’m in no hurry

My hat’s back … on my head, I mean. It’s off the hook and back on my head.

It’s that time of year. Being of fair skin, I’ve learned the hard way to cover up as much as possible in spring and summer. And melanoma is much on my mind.

In June this year, one of our optometrists died from melanoma – she’d had about eight months from diagnosis to passing away. When I was there for my annual visit this time last year, she was still with us, probably unaware of the future. Jim Stynes, the AFL footballer, passed away earlier this year after a very long and public battle with melanoma – his biography has recently been published. And for the past three years, I have been working with an organisation that has been trying to develop a radiopharmaceutical that will both diagnose and deliver treatment to patients with melanoma.

It’s a mongrel of a disease – and yes, most cancers are. But this one spreads so quickly from the primary tumour, that unless it is diagnosed very early, your chance of surviving is minimal. Cancer Council Australia reports that melanoma is the fourth most common cancer diagnosed in Australia, and Australia has the highest rate of incidence, along with New Zealand. In 2008, there were 11,000 new cases diagnosed.

There is a lot of research being conducted in Australia and internationally to try and improve diagnosis and treatments for melanoma. The University of Sydney’s Professor Rick Kefford recently identified it as a priority for the future, and others are doing the same, which is good because there’s not much out there that can treat the advanced disease.

The Australian government’s Therapeutic Goods Administration recently approved the drug, Zelboraf which is designed to treat tumours in patients whose tumours express a gene mutation called BRAF V600E. But it doesn’t get rid of the disease completely. And it’s not on the Pharmaceutical Benefits Scheme yet.

Neither is Ipilimumab, which contains a protein that supports the immune system in its attack on the tumour. If you want to use this drug, known as Yervoy, it will cost you $120,000, but we all know most patients with advanced melanoma would not be able to afford to buy it.

Melanoma Patients Australia (MPA) is currently calling for those affected by melanoma to make a submission to the Pharmaceutical Benefits Advisory Committee (PBAC). PBAC has expert panels that make recommendations to the Australian Government about what medications should be subsidised and is accepting submissions from 26 October to 10 November. MPA says that PBAC has considered funding Yervoy before but decided against it, citing the need for more information. MPA is encouraging people to provide information this time around through submissions to the PBAC process, and has developed a guide to assist those who would like to have their views considered.

It’s bittersweet though, as those who will lobby for this medication are probably unlikely to be the main beneficiaries even if their submissions are successful in convincing PBAC experts of the need for funding. And this medication is not going to be the silver bullet for melanoma. More research will still be needed to develop other ways of treating this disease.

So with that in mind, I’m keeping my hat on my head, the sun screen bottle at hand and limiting exposure. Perhaps I’ll have to adopt the ways of the vampire, and only come out at night?

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Volunteering in the dark

It’s election season in the ACT and although I am not a member of a political party, I usually volunteer to leaflet drop in our suburb for The Greens.

Earlier in the week I had made a start – it wasn’t a big area to cover, and I got about two thirds of my section done in 45 minutes.  I was able to make good time with the kelpie dragging me along, although the criss-crossing of the street did confuse her for a bit.  She wasn’t the only one confused; the difference between the “no junk mail” and “Australia Post only” signs wasn’t clear at first but I soon worked it out.

Tonight, I thought I would take advantage of the night-shift dog walker being out at a meeting, and deliver the rest of the leaflets, and earn some brownie points by walking the dog.

Springtime in Canberra has a lovely scent – jasmine and wattle and the odd jonquil or two.  It’s lovely to wander the streets, even after the sun has set.  So I set off with my satchel of leaflets, doggie bag, and phone.  After getting wound up in the lead a couple of times (it’s confusing being walked by the wrong human at night) I found the real folly of my initiative was trying to find letterboxes in the dark.  I should have brought a torch.  It’s really surprising how many letter boxes are hidden half way up a drive way.  It didn’t help that I’d had a glass and a half of full cream chardonnay with dinner either.  Much fumbling ensued as I tried to find the slots in the boxes.  But we made good progress, and I delivered what I had. 

I ran out of leaflets of course, so I’m still not finished.  There’s always Saturday.