A newly-launched group advocating for New Zealanders with Chronic Lymphocytic Leukaemia (CLL) has joined the ‘Right to Live’ fight for access to life-saving medicines for aggressive cancers. Around 2000 New Zealanders live with CLL, an incurable cancer that can be indolent but often becomes life-threatening.

The new patient group, CLL Advocates NZ (CLLANZ), is petitioning Parliament to approve funding for two treatments that can provide complete remission from aggressive CLL, allowing patients facing death to resume full, productive lives. 

CLLANZ founder and executive director (and consultant physician) Neil Graham, who has CLL, was granted compassionate access to one of these drugs, ibrutinib, and nearly five years later continues to work and live life to the full. He says Pharmac’s continuing refusal to fund the drug is not only a death sentence for New Zealanders with aggressive CLL, but flies in the face of international clinical opinion and best practice.

“Ibrutinib has been registered in NZ since 2015, and is funded in 44 of 45 countries of similar or lower wealth, NZ being the exception. Evidence for the effectiveness of this treatment is incontrovertible, for example overall survival for patients on ibrutinib at first line is 88%. It’s hard to imagine why the evidence that was so compelling for 44 other countries has not persuaded Pharmac to the same position,” said Dr Graham.

Wellington historian, Ben Schrader, a trustee of CLLANZ and also a CLL patient, is on the same treatment on compassionate access and is also in complete remission, after coming close to death in 2016. Ben Schrader presented the CLLANZ petition today at Parliament to ACT leader David Seymour, and said without this treatment he wouldn’t standing there today. 

“I feel very lucky to be still alive and enjoying a full and active life. But others have been less so. The access programme I was on has now closed, so the only option for CLL patients in the same boat that I was in, is to fund this very expensive medicine themselves. But few can afford it, so the system divides people into the haves and have nots, which is desperately unfair.

“We know this government wants to be transformational. There could be nothing more transformational for thousands of New Zealanders facing imminent death from the diseases represented here today than for the government to fund medicines that could extend their lives and allow them to continue to contribute to New Zealand life in diverse and meaningful ways.

“They deserve the same chance of an extended life as I have been given. They too have a right to live,” said Dr Schrader.
 
CLLANZ is seeking funding for ibrutinib (Imbruvica™), a Bruton’s  Tyrosine Kinase inhibitor and venetoclax (Venclexta™), a  small molecule inhibitor of BCL-2.