The high cost of staying alive

If the government can rush to fund Herceptin, why not Tarceva, a drug for those suffering from more lethal lung cancer? One patient who's paying $2,000 per month just to stay alive speaks out

During the election campaign, government dollars were promised in record amounts to protect and improve the health of New Zealanders, and now within the first 100 days of the new administration, funding for the breast cancer drug Herceptin will be extended from nine weeks to a full year.
National’s health policy promised that New Zealanders would “have broader access to medicines and be able to get innovative new medicines, sooner” through a “boost [in] overall funding for medicines”. If you think that means a new level of fairness in the funding and running of our health system and medicines, think again.
Unfortunately, like a number of other New Zealanders, I have non-small cell lung cancer. The current best treatment for this is the drug, Tarceva. But while Tarceva is funded in England, America and Australia, as well as many countries in Europe, it is not funded in this country.
Why not? Peter Moodie, Medical Director for Pharmac, the government’s drug distribution arm, says that test results have not been conclusive enough and the drug had side effects. It’s a strange logic. During my four years with cancer I have been through a number of chemotherapy programmes and I say adamantly that there are a couple of fully-funded programmes where the side effects are far worse than Tarceva will ever be.
I am far from alone in my need for the drug. Statistics show a registration of approximately 1000 patients with cancer of the trachea, bronchus and lung per year during 2003, 2004 and 2005, compared to between 2200 and 2500 per year registered with cancer of the breast. But the mortality rate reported for breast cancer sufferers is much lower than those with cancers of the trachea, bronchus and lung over the same period of time. For example if we look at breast cancer in 2005, there were 2458 registrations and 647 deaths. For trachea, bronchus and lung cancer, there were 948 registrations and 1451 deaths.
The Ministry of Health is quite clear: “The leading cause of death from cancer in 2004 was cancer of the trachea, bronchus and lung”. This is surely proof that we should be putting more emphasis into the funding of drugs like Tarceva for lung cancer. If the government can find the money for Herceptin, why not Tarceva? National MP Jackie Blue has said of Herceptin funding that her party just wanted “to do the right thing”, while new Health minister Tony Ryall criticised the Labour government for spending millions on bureaucrats and not enough on medicines. The precedent is set, but will Ryall act?
Hang on, you might say, if you’ve got lung cancer it’s probably your own fault. Not so. As with many cancers, it is not known how lung cancer occurs, but it’s true that there’s a link to those who have smoked. I have never smoked. I did nothing to attract this disease. Adding to the unfairness of my situation is that if had contracted a sexually transmitted disease or AIDS – even a strange tropical disease while I was travelling the world – then the drugs given to combat these would be free.
The Auckland District Health Board’s chief oncologist, Dr Richard Sullivan has been battling for the inclusion of Tarceva on Pharmac’s list since its inception some four years ago. He has struggled in vain, largely because the cost of the drug is prohibitive.
I have been on Tarceva for 18 months and in the first year paid $4,400 per month for it. I have so far spent over $66,000 just to stay alive. This is simply outside the reach of most New Zealanders. It would be for me as well if I stopped working. So quite literally I now have to work to live.
Who is going to reimburse me? Who is going to keep my healthy? Does any political party care? Frankly, no.
During the election campaign, I heard no mention of how the government’s distribution arm, Pharmac, was to be revamped. Surely that’s a strange situation, as all parties have said that they are not happy with the way our drug dollar is spent, or wasted.
To my mind, Pharmac is in dire need of an overhaul. Our drug/health dollar is not getting to the New Zealanders that need it. There is a need to look at other ways of distributing this money so that it does support those with the greatest need.
I have written to Helen Clark and Health minister David Cunliffe and had no reply. My MP Wayne Mapp has written to Cunliffe, but to no avail. Roche Switzerland, manufacturers of the drug? No reply.
After some correspondence, I’m pleased to say we finally got a sensible response from Roche New Zealand, the distributors of the drug. To their credit, they have come to the party and reduced the cost by 50 percent. Nevertheless, we are still looking at $2,000 per month or $74 per pill.
My main gripe, and that of a number of other New Zealanders in my situation, is that Pharmac does not fund Tarceva, a drug that could save my life and a lot more lives besides if it were within the financial reach. While it’s extending my life, it is costing me a king’s ransom. So the question must be, “who should benefit from the distribution of our drug dollar?”.
It seems unfair to me that new immigrants get access to government funded drugs and healthcare when I don’t. The whole system seems wrong.
Do I get upset when the new immigrant in the hospital bed beside me needs an interpreter to explain what’s wrong and ends up with a bone marrow transplant paid for by my health dollar? I do.
Do I get upset when a colleague of mine, just arrived from South Africa, has to have a hip replacement, and its paid for by my health dollar? Yes, I do.
I am a New Zealander, have paid New Zealand taxes for nearly 50 years, still have a full time job and am still paying taxes. I have not claimed on any part of the welfare system. I have neither smoked, nor done anything to attract my disease. Surely in my hour of need I have a right to expect that my taxes be used to keep me healthy. Instead, I am left to put my hand into my own pocket just to stay alive. There are many other New Zealanders suffering the same plight and many don’t have the ability to pay. They will die. We need help.
Wayne Watkin is a Pundit member and cousin of the site's editor.