Help me fund my Lung Cancer treatment - Alectinib - 'cos Pharmac isn't

My name is Rae Collins. I live in Ponsonby, Auckland with husband Chris. I am a proud grandmother of 8 grandchildren – half of whom live overseas – great reason for travelling!! - and 4 who live in Wellington. I am normally active, working, walking, sailing, yoga and cycling, and was expecting to be so for the next 10 years at least.

I do not smoke and never have done.

I am sharing this with you and asking for your financial support because Pharmac does not fund the very effective targeted therapy drug Alectinib which enables me and around 100 other New Zealanders, to live a good quality of life for around the next five years or so.

This is my story.

Last year I suffered many colds. In January I started coughing up odd spots of blood. And had pains in my chest – once the ambulance was summoned. And the ache in my hip! Limping about, and on strong painkillers so I could sleep.

Much to my horror I was diagnosed with ALK positive, stage 4 Lung Cancer! What??? I don’t smoke!! This condition is specially targeted at mainly women who are non-smokers within a median age of around 52 years.

The shock of this diagnosis had a huge emotional toll on Chris - who has just retired - and I, resulting in my leaving my full time paid employment.

My specialist prescribed Alectinib. Three days after taking it , I noticed a difference.

This drug works! I feel wonderful! No Limping! No Pain! Sleeping! Energy!!!! Getting on with life!! A blessing….

Pharmac does not fund Alectinib. Even though it is approved in New Zealand and free in many countries including Australia where it is AUD40.50 per prescription. On New Zealand Alectinib costs us $6,497.50 every four weeks. That is $232.05 per day, or $84,467.50 annually for at least 5 years. And my Health Insurance Company will only contribute $8,000.00 per year.

The worry of paying for treatment has put a heavy cloud over Chris and myself.

Our future together is short and bleak.

- We will have to sell our home - our retirement project

- I can no longer afford small items such as the odd cup of coffee, or movie

- Or travel to visit family

- My bucket list has gone out the window

- We will have no legacy for our children

- My husband will have a considerably reduced quality of life when I am gone

I am very confused about the Health System in New Zealand

I do not understand as a New Zealand Citizen and taxpayer, why I have to pay for my treatment at all.

I don’t understand why treatment of certain types of lung cancer is funded, but not others.

I do not understand why we have to use all our hard earned savings to pay for treatment that one would expect to be provided by the health system?

To that end, I humbly ask, if you could see your way to help with the cost of my treatment, that would be very much appreciated.

It’s not that I am doing nothing! I have written a letter to support a submission to Pharmac by the Lung Cancer Foundation. And have some part time work lined up as well. But this is not enough.

Your contribution, from a month’s supply of $6,497.50 or just to cover some of my 8 daily tablets at $232.15 or just $30 per tab is another bite taken out of this monster of a money bag which is weighing heavily on our backs.

Your help will enable us keep our lifestyle and enable Chris to have a good quality of life when I am gone – a Massive Weight on my mind.

Your generosity will enable me to live normally and usefully for as long as possible.

I am most grateful to those of you who have already contributed.

Thank you, in anticipation, from the bottom of my heart!