Neil Graham

I was diagnosed with chronic lymphocytic leukaemia in 2000 just after my 50th birthday. I had several treatments over the next 15 years, but was generally well and active, and continued working as a physician with the Bay of Plenty District Health Board.

About five years ago my disease went out of control. I developed blood transfusion-dependent bone marrow failure. My lymphocytes peaked at almost one thousand times the normal range. My days were clearly numbered. The only treatment option was a new medicine that was registered but not funded in New Zealand, and I was lucky enough to become the first CLL patient to get this therapy on a compassionate access programme.

Over the following months my bone marrow largely recovered and my wellbeing returned. I remain in a state described as “a complete remission”. I am working, teaching, researching, and paying taxes. I’m physically active (eg 300+ km back country mountain biking in a week recently), enjoying life, and I am alive. What has happened medically to me has been remarkable, professionally and personally.

Five years on, the compassionate access programme is closed to new entrants, the medicine and others like it that have since become available are still not funded, and people are dying as a result. The treatment I’m on is funded in 23 countries with similar or lower wealth than New Zealand, the lowest on the scale being Brazil, Columbia and Albania. All 23 of these countries have looked at the same evidence reviewed by Pharmac, and decided to fund this life-saving drug. But Pharmac has looked at that evidence and judged that lives such as mine are not worth saving.