Dawn Picken: A miracle cancer drug has given a friend new life

Joanne Rye-McGregor flew to Malaysia to buy a drug called Ibrance, in hopes it would stop cancer cells from growing and dividing. Scans show the drug is working.Photo/Supplied.

Joanne Rye-McGregor is back from the dead. My friend greets me with a hug at Back Porch Cafe in central Mount Maunganui. As she walks, long grey curls brush her shoulders. Jo is 56 years old. She's sinew and bone, her once medium frame lighter by about 20 kilograms. Cancer does that.

When I saw Jo the week before, I was alarmed. She lay in bed, tubes in her nose connected to a whirring oxygen machine. Her husband, Rob, served me coffee and a chocolate bikkie while I reclined above the bedspread.

An image of Tuesdays with Morrie appeared as I imagined all future visits like this – Jo, recumbent, and me, popping in weekly to chat and witness her decline. Her appearance scared me enough to message a mutual friend, suggesting she might want to visit Jo before it was too late.

Oncologists had contacted hospice and suggested Jo plan her funeral. She's already laid much of the groundwork for an unconventional memorial that will include a dancer.

Jo has been open about living with terminal cancer, a story I told two years ago in 48 Hours: Living life with terminal cancer

She was diagnosed with breast cancer in 2010 and had a double mastectomy. Jo learned in 2015 cancer had spread, becoming stage IV – incurable, inoperable.

Instead of waiting to die, Jo has used intellect, networks and her obsidian will to keep living. She says she's tried every Government-funded chemotherapy available and uses alternative therapies, too. Radiation is a recent addition to her war chest, to obliterate, or at least shrink, brain tumours. Lung inflammation is another recent scourge.

Jo flew to Malaysia in August to pick up a drug called Ibrance (the brand name for palbociclib), in hopes it would stop cancer cells from growing and dividing, and shrink tumours throughout her body, including on her liver and upper chest.

Scans show the drug is working. Ibrance is approved in New Zealand but not funded. It costs $6000 to $7000 per month here, (and requires a $1000 injection of complementary medication) and $2800 per month in Malaysia.

As we reported in the Bay of Plenty Times Weekend last Saturday, Ibrance is funded or subsidised in other OECD countries such as Australia and Britain, where patients pay about $40 a month for the drug.

On Tuesday, Kiwi cancer patients marched on Wellington to present a 33,000-plus-signature petition to Parliament calling on the Government to fund palbociclib.

It's worth asking why drugs for erectile dysfunction are funded, while other, potentially life-saving, medicines are not. Do you know anyone killed by lack of sex? I don't, but I know plenty of people who've died of cancer.

A Breast Cancer Foundation report shows average survival for a Kiwi patient with advanced breast cancer is 16 months, compared with two or three years in other countries such as Australia.

Pharmac - the government agency which decides which pharmaceuticals to publicly fund in New Zealand - isn't scheduled to consider Ibrance until February.

Meanwhile, Jo has learned she can have the drug sent from Malaysia, rather than travelling to get it. "So it's $10,000 every three months to keep me alive, but it's better than $24,000 if I were just doing it through the New Zealand system."

Jo's a former teacher, Omanu surf lifesaving fundraiser, documentary filmmaker … and there's much more she wants to do, including running for the city council so she can help safeguard Mount Maunganui's environment and its people by stopping the use of a chemical weed killer linked to cancer.

She didn't want to fundraise for Ibrance until she knew it would work. It has, and now she's ready to pass the plate to keep living – and giving back to the community she loves. Jo got a personal loan to buy the first round of the drug.

"There are so many generous people out there ... It just feels better that I know it's working before I ask for help ... because otherwise I'd feel I'd have to give the money back to them." Jo figures she'd need 1200 people to give $10 every three months.

I've always been sceptical of throwing tens of thousands of dollars at treatments that might secure someone an extra month or three of life. I've reported on people who drained their family's savings on eleventh-hour remedies and died shortly thereafter.

But Jo's hope is contagious and the improvement in her health is real.

Do we spend too much money trying to prolong our lives? Academics struggle to answer this question. But I believe there's a difference between keeping an unconscious 86-year-old alive with machines when there's little hope of recovery, and allowing someone 30 years younger, with all her faculties, to keep fighting.

I'm allowing myself to imagine Jo watching my 14-year-old daughter finish college. And university. I envision Jo's dancer twirling, not at her funeral, but at a giant 60th birthday party.

She says renewed strength generates its own energy "when every day I wake up this happy and this strong. I'm going to set medical history because I do have a lot of cancer in my body and it's going to go away."

To help fund Jo's Ibrance, visit: Givealittle page for Joanne Rye-McGregor