Leukaemia patients campaign for drug access

By MARTIN JOHNSTON

Paul Goodwin says he was saved from the potential death sentence of leukaemia by the "miracle drug" Glivec.

The 43-year-old Gore farmer and father of six is the public face of a campaign to encourage the Government to expand its plans for buying the expensive drug.

He was spliced between politicians on election-style hoardings erected in Auckland, Wellington and Christchurch yesterday.

The hoardings, with newspaper and radio advertisements and a website, are the main tools of the Leukaemia and Blood Foundation pre-election campaign.

Doctors say Glivec is a breakthrough in the treatment of chronic myeloid leukaemia (CML), a cancer of the blood and bone marrow.

Rules proposed by Government drug-buying agency Pharmac would restrict taxpayer-financed use of the drug to an estimated 10 new patients a year. They will have to be in the two most advanced stages of the disease.

Leukaemia experts say the rules are too tight, and from 60 to 80 patients in the chronic phase would miss out completely.

The foundation says this is unreasonable, because these are the people most likely to benefit from Glivec.

The drug costs about $70,000 a year for each patient, about twice the price of the present main drug, interferon-alpha.

Mr Goodwin said he was given interferon after being diagnosed with CML last year.

Because of a blood-cell test that showed - erroneously it was later found - that he had gone into advanced CML, Glivec's maker, Novartis, gave him the drug free for up to three months, until he was well enough for a bone marrow transplant. It worked so well that the disease went into remission and he did not need the transplant.

The free Glivec deal ran out in May, but he is still taking the drug. Mr Goodwin and his family are worried about how they will pay the $6300 monthly bill and what will happen if he stops swallowing the drug capsules.

Pharmac expects to decide on Glivec this month. It is receiving public submissions until Friday.

nzherald.co.nz/health