Kerre Woodham: What do you do when your lifesaving treatment isn't funded?

What would you do? I've been thinking about this ever since Paul's phone call yesterday. You might have been listening when he rang in. We were talking about the cost of living and how you can make economies and you can get an extra job and you can do all this and all that and try and get through, unless life throws you a curveball.  

And that's exactly what happened to Paul. He and Sandra have been together for 34 years. They have two sons, 18 and 20 They've lived good lives. They've worked hard, they've paid off the house, they've got all their insurances including medical insurance. They've never asked for anything. They've never needed to ask for anything. They've just lived their lives and been your typical Kiwi family. Then out of the blue, Sandra gets diagnosed with lung cancer. She's never smoked. It's a rare genetic condition and this particular lung cancer is a killer. This particular type doesn't respond to the treatments that are available and funded under our public health system, but there is a drug that's available that will slow the progress of the disease.  

So the bad news, you get the diagnosis. The good news, there's a treatment. The bad news, it's not funded by Pharmac. You can buy it on the open market, but you have to come up with $11,000 a month —nearly $4,000 a week— to pay for the drug that will give Sandra more time with her family. They don't have a lot, but they've never needed a lot. They've got their own home, and they've looked after themselves and they've never been on benefits, but where the hell do you come up with nearly $4,000 a week?  

It's not a story that's unique to this couple. If you have a look on the Givealittle pages, there are so many that are dedicated to families desperate to find the money for unfunded drugs that will keep their mum or their dad alive just that little bit longer. For some, there's hope of a cure, for many it's buying time. And it seems so cruel. The diagnosis is bad enough, terminal cancer. Then you're given a lifeline, oh but there is a drug that will keep you well for a lot, lot longer than you can expect or imagine. And then that lifeline evaporates because you find out that it's not funded by Pharmac and if you want it, you're going to have to lose everything.  

It's a real Sophie's choice. You might have to sell the house if you own the house, you might have to sell everything you own, you might have to sacrifice your pride and put yourself out there asking for help from strangers to just buy you that little bit of extra time. If you sell the house, you're going to leave the family without security if the treatment doesn't work. I mean, what an awful, awful situation to be in and an awful, awful conundrum.  

What would you do? And perhaps what are the discussions that you've had within your family? Remember when Herceptin wasn't funded and that seemed to hit younger women particularly. That was a dreadful decision to have to make. And yet Herceptin had very good survival rates, so what do you do?  

I suppose it depends on your circumstances, your age and stage. If you're a parent with young children, I imagine you would fight and you'd fight tooth and nail to get a bit of extra time. Whereas I think, and you never know until you're in that situation, but I think I would let fate take its course. My daughter is an adult now, she's happy, she's settled, she has her own family and that makes a big difference when you're a parent. I've had more than my share of good times, more than my fair share of life, I think I'd probably go rather than use all my KiwiSaver and everything else just to buy me a bit of extra time. But I'm at a different stage.  

There are so many applications before Pharmac at the moment to fund unfunded medicines that have a proven track record. There are so many pharmaceutical companies that want approval to be funded by Pharmac that offer people a lifeline. It just seems so, so cruel that you're given the diagnosis, you're reeling from that, then you're told, oh but we can fix you or we can give you time, but it will cost you $11,000, $16,000, $25,000 a month. Impossible money, monopoly money. I would love to hear your stories and how much more you think should be put into Pharmac to give people a fighting chance.