A family desperately fundraises to cover the costs of unfunded medications required to prolong the life of Simon Clark, who is battling multiple myeloma.
Video / Jason Oxenham
* Leukaemia and Blood Cancer New Zealand is holding Shine for a Cure lantern events in Auckland’s Domain and Christchurch’s Hagley Park this Saturday.
* Pharmac is yet to announce new blood cancer medicines, following a big funding boost by the Government in June.
It is three months since Simon Clark died of blood cancer, and the grief is still raw for his wife, Libby, and four children.
“It’s really hard. I miss him a lot. The kids miss him,” Libby told the Herald, through tears. “Some of the kids are working through some big feelings, and we are being well supported by school. We just miss him, you know.”
Wider whānau have stepped up to help Libby as a newly solo parent of four, and the West Auckland family has been helped by others, including Leukaemia and Blood Cancer New Zealand.
In the days after doctors told them that Simon was approaching death, the charity organised for a play therapist, Debbie Mills, to hold a session with Ethan, 16, Jacob and Liam, both 6, and Eleanor, 5.
That gave them some understanding and comfort about what was happening. Simon died on June 17, aged 48 and two and a half years after being diagnosed with multiple myeloma, a common blood cancer.
His younger children have continued attending a kids’ club run by Leukaemia and Blood Cancer NZ, for the children and siblings of blood cancer patients. The organisation helped the Clarks in other ways, including with parking and supermarket vouchers during his gruelling treatment.
The family is now returning that support. Libby and the four kids will this Saturday evening complete a 5km fundraising “Shine for a Cure” walk at the Auckland Domain, with Simon’s sister, Lisa Clark, and other close family and friends.
Libby Clark with her children: Eleanor, held by eldest Ethan, and twins Liam (centre) and Jacob (right). Photo / Sylvie Whinray
They will hold a silk lantern in remembrance of Simon, and that night the Sky Tower will be lit up like a lantern for the event.
“It is to raise awareness and raise money. They use their funds for research into blood cancers, and, in my view, you can’t have too much research. I hope one day there will be a cure and that will prevent people like Simon dying at a ridiculously young age.”
Simon Clark became the face of New Zealand’s dire lack of funded blood cancer drugs, after a front-page story on the desperate measures his family and friends took in order to fundraise for a medicine, daratumumab, he needed to stay alive, but which isn’t funded by Pharmac. That included collecting aluminium cans to sell as scrap.
The story of Simon Clark and his family was featured on the front-page of the Weekend Herald in February.
Myeloma is incurable, but it can be kept below detectable levels (remission) for years by treatment and medicines. Each combination of drugs eventually stops working and myeloma returns, more aggressively. When that happens, a patient switches to another option.
These lines of defence have strengthened and multiplied in the past decade. Newer medicines have greatly increased life expectancy from diagnosis, and more are being released and developed.
New Zealanders have been largely excluded from that revolution, however, because of a lack of funded drugs. Proven medicines, including daratumumab, remain on Pharmac’s “options for investment” list, meaning the government drug-buying agency accepts their benefit and wants to fund them, but doesn’t have the budget.
Hopes were raised in June when the Government announced an extra $604 million over four years for Pharmac. However, many of the drugs that will be funded are yet to be confirmed, one of the reasons being price negotiations between Pharmac and drug companies.
The wait is a matter of life and death for some blood cancer patients, and keeping public pressure up is another reason why the Clarks are taking part this Saturday.
“It is keeping the spotlight on it, and pushing and pushing until we get up to speed with the rest of the world,” Libby Clark said.
Leukaemia and Blood Cancer NZ chief executive Tim Edmonds said Pharmac had indicated four blood cancer types would benefit from the boost in its budget.
“Keytruda for Hodgkin lymphoma was the first and is now funded, so we are still waiting for announcements of medicines for three additional blood cancers. Pharmac knows how important access to daratumumab is for myeloma patients and we hope it is being considered within the next tranche of medicines.”
The “Shine for a Cure” lantern event will also be held in Christchurch’s Hagley Park. Supporters will also hold smaller events across the country. Details on the events - which begin at 5.30pm this Saturday - and how to donate can be found at shineforacure.org.nz
“People will be carrying different coloured lanterns that symbolise either their own blood cancer journey (teal), supporting loved ones with cancer (white), or to remember those that are no longer with us due to cancer (gold),” Edmonds said.
Money raised will help Leukaemia and Blood Cancer NZ continue its work, including the support of families like the Clarks, and annual provision of about $500,000 for research. The need is great - every day, around eight New Zealanders are diagnosed with a form of blood cancer, including leukaemia, lymphoma, or myeloma. Leukaemia is the most frequently diagnosed childhood cancer.
