'Bittersweet' victory for Bay of Plenty cancer patients fighting for funding

Tracy Barr-Smith has stage four metastatic breast cancer and has long fought for better funding to help save and prolong lives. Photo / File

Voices of Bay of Plenty cancer patients who have fought hard for calls of better access to life-prolonging treatment have finally been heard, with the Government announcing "landmark" changes to the way cancer is treated in New Zealand. Reporter Kiri Gillespie talks to the women who helped spearhead petitions calling for change about how this impacts them and their hopes for the future.Voices of Bay of Plenty cancer patients fighting for better access to drugs considered "game changers" have finally been heard, reducing some to tears.

Health Minister David Clark announced on Sunday a new Cancer Control Agency would be in full swing by December 1, led by clinical cancer specialists reporting directly to him.

A $60 million funding boost into Pharmac and a fast-track system into Pharmac's drug-funding decision process were also announced.

The announcement has been applauded by advocacy groups with some describing it as a "landmark" beginning.

Tracy Barr-Smith has stage four metastatic breast cancer and has long fought for better funding to help save and prolong lives. Photo / File

For cancer patients such as Tracy Barr-Smith, the news was bittersweet.

Barr-Smith is living with stage four metastatic breast cancer, also known as advanced breast cancer. She is a "metavivor" - a portmanteau of her terminal diagnosis and survivor - who headed a petition for better access to life-prolonging treatment.

"It's fantastic news but there are so many more cancers ... It's flipping hard work to be battling cancer and having to fight to get heard as well. So we are thrilled, we really are, but we are not there yet."

Barr-Smith was hopeful at news of the agency. However, she wanted more done to ensure the New Zealand health system kept up with advances in modern medicine - to prevent future cancer patients from repeating her fight for funding.

"It has been a rough 12 to 18 months since the petition started. The friends that we have lost along the way, we did it for them just as much as we did it for ourselves and those that come after us, so they don't have to go through what we went through," she said through tears.

Barr-Smith was among many who lobbied hard for change; spending countless hours researching; creating the petition; marching on Parliament steps and presented to the Health Select Committee. It was exhausting but worth it, she said.

Health Minister David Clark unveils a new cancer control agency and announces a $60m funding boost for Pharmac. Photo / NZME

The funding boost for Pharmac is expected to fund several new cancer treatments, including life-prolonging wonder-drug palbociclib (known as Ibrance) which could become available from April next year. Funding for other treatments remains unknown, for now.

"Getting those drugs [Ibrance] it was going to cost us $6000 a month and now we'll no longer have to find that money," Barr-Smith said.

"That's going to make a huge difference. For some people, it literally comes down to putting more food on the table for families. For others, they will be able to live longer.

"This affects people who are going to be able to see their child start school, or get married or meet their grandchildren for the first time."

Barr-Smith said Ibrance was already considered a "game-changer" treatment that was readily available in other OECD countries.

Tourism Bay of Plenty chief executive Kristin Dunne and her father Stephen Dunne presented a petition to Parliament last month calling funding for Cetuximab, also known as erbitux, for bowel cancer patients.

Kristin Dunne said there will be many who will benefit from the announcement but also many more, like her father who is living with stage four bowel cancer, left wondering whether the changes will make any difference to them.

"Time is not our friend and we are all struggling physically and financially so answers and timeframes are really important."

Rotorua woman Donna Burns is one of those people left uncertain.

Burns is living with stage three Non-Hodgkins Lymphoma. She's currently enduring her fifth bout of chemotherapy and is facing a $30,000 bill to fund her treatment.

Rotorua mother Donna Burns is battling cancer and knows the financial pressure of self-funding treatment. Photo / NZME

"Without knowing what's going to be funded, it's hard to know how it will impact me but I'm stoked for future cancer patients that may not have to go through what I'm going through at the moment."

Burns was now reluctantly considering selling her family's caravan, which has been their holiday go-to for more than 10 years, to help pay for her treatment.

She said cancer was hard enough to go through without the added financial pressure of self-funding treatment. But she remained optimistic.

"When you are in it, you just have to get on with it. I've got two kids. That's what my fight is for - to be around long enough for them."

Last month Pharmac also announced plans to fund Kadcycla for HER-2 positive metastatic breast cancer patients such as Tauranga woman Sue Wall-Cade, who also fought hard for the funding. Wall-Cade said at the time she was overjoyed and it was "another tool in the toolbox to bash cancer. It's fantastic".

Pharmac board chairman Steve Maharey said the $60m boost would help make "real inroads into funding medicines" and nearly 60,000 New Zealanders were expected to benefit within the first year.

Breast Cancer Aotearoa Coalition chairwoman Libby Burgess said she welcomed the news but was concerned the agency would be embedded within the Ministry of Health, "thus losing the benefits of independent oversight".

Bowel Cancer New Zealand's Mary Bradley. Photo / File

Bowel Cancer NZ spokeswoman Mary Bradley said it was a step in the right direction but the real work was still to come. It was disappointing the national bowel screening programme had not been "ramped out".

New Zealand Māori Council executive director Matthew Tukaki said it was a "landmark" beginning and while it would take time "to really get things under control" it was an excellent start.

However, Lung Foundation chief executive Philip Hope said he was disappointed as there was nothing significant for lung cancer patients.

The Government's 10-year cancer plan includes:

• Cancer Control Agency to abolish postcode lottery and hold DHBs to account.

• A $60m funding boost to Pharmac; $20m this year and $40m in 2020/21.

• A new system to fast-track Pharmac's drug-funding decision process.

• Equitable cancer survival rates across New Zealand by 2030 - including across geographic areas and across ethnicities.

• A focus on consistent and modern cancer care; equitable survival outcomes; fewer cancers and better cancer survival overall.