Crying out for funding
Every year more than 3000 New Zealand women are diagnosed with breast cancer. Those diagnosed with advanced breast cancer have a much worse survival rate than in some other countries. Kirsty Lawrence looks into why our women are dying earlier.
As Wiki Mulholland’s Givealittle page grows she sees it not as money, but time.
Time to spend with her three children. Extra time to go on family holidays.
Birthdays to celebrate. Mulholland is 40 years old and in May was diagnosed with metastatic breast cancer, the most advanced stage of breast cancer, which has spread to her bones.
When her family started looking at treatment options they learned early on the drug that gives her the most chance of gaining extra time, with the least side effects, is not publicly funded.
This drug, known as Ibrance, comes with a hefty price tag of almost $5800 a month, and for Mulholland to take it she also requires another drug, which costs $1000 a month.
Unfortunately, this Palmerston North woman isn’t alone in this fight.
In a Facebook group for women with metastatic breast cancer, called the Metavivors, there are about 240 women who all have metastatic breast cancer.
Many are in the same boat – wanting that extra time but, facing expensive treatments, their options become limited.
Mulholland says there is a divide between those who manage to buy treatments and those who can’t.
‘‘Older ladies who have had careers, they cash in [Kiwisaver] and self-fund. ‘‘Then there are the ones who are a lot younger and haven’t got that access to that and often have young families, so there’s definitely a divide.’’
This month, these women are planning a march to Parliament to hand over a petition for Pharmac to fund Ibrance. The petition has more than 28,000 signatures on it. Pharmac is a government agency that negotiates with drug companies and decides which medicines should be subsidised by taxpayers. Pharmac director of operations Lisa Williams says the agency can negotiate through its commercial processes and so is able to continually grow the range of publicly funded medicines, leading to more people being treated.
But Breast Cancer Aotearoa Coalition chairwoman Libby Burgess says women with metastatic breast cancer in New Zealand actually have it worse than women in other countries. Much worse.
‘‘We die sooner.’’
A recent report by the Breast Cancer Foundation shows the lack of treatments given to New Zealand women with metastatic breast cancer means women live only 16 months more on average. In other countries, they get two or three more years.
Burgess says a number of drugs need to be funded by Pharmac for breast cancer patients but Ibrance should sit in the must-fund position, right at the top of the priority list.
Ibrance is being considered for funding after Pfizer, the drug company, made an application to Pharmac in February. But the process isn’t quick. It was sent to a cancer
treatments subcommittee meeting on September 23 for consideration and from there it heads to a pharmacology and therapeutics advisory committee.
Ibrance won’t be talked about until the February meeting, a year after Pfizer applied.
Breast Cancer Foundation research and communications manager Adele Gautier says the group is pushing for Ibrance to be put on the November agenda.
‘‘We don’t think it will happen as fast as it should and we would like to see Pharmac moving faster.
‘‘Time is so important, because if you wait too long maybe you’re not going to have time to benefit from it.’’
Pharmac director of operations Lisa Williams says expert advice and considering all the evidence is an important part of the assessment process for a new funding application.
‘‘This next stage is to complete our health economic assessment and then to compare the relative value of [Ibrance] with other pharmaceutical funding options.
‘‘Possible opportunities for new investment will always exceed the budget Pharmac has available, so a prioritisation process to compare and rank funding options is an intrinsic part of Pharmac’s decision-making process.’’
For Mulholland, the decisions made in these meetings determines her future.
She is having chemotherapy, but once that stops working her next option is Ibrance.
Her family made a Givealittle page, at the request of friends and other family members, to help fund the treatment.
More than $53,000 has been raised, which means she can afford nearly a year of Ibrance. By purchasing eight rounds she gets four free through a scheme Pfizer runs.
Going ahead with the Givealittle page was tough.
‘‘The biggest thing was the shame, it felt like shame. The shame of having to ask for help.
‘‘We went through life making sure we had our own home. We both had jobs and we worked to be these role models for our children that if you worked hard you got rewards,’’ Mulholland says.
But she has put her pride aside as the project is about getting time to spend with her three children – Molly Rose,17, Ihaia, 13, and Patrick, 10.
‘‘Even my youngest, he will have a look and go ‘oh great, Mum, we have six months’.
‘‘I think ‘oh good, I can see this and see this and we can go away on a holiday’.’’
Burgess thinks the Government can’t sit on its hands.
‘‘The Government is responsible for setting the budget for medicine and it is responsible for the system.
‘‘Our Government will say we will not interfere with Pharmac but sometimes there’s a medicine that so obviously needs to be funded ... people are dying who could have been saved.’’
Minister of Health David Clark said in a statement that he understood concerns patients were raising.
‘‘However, there are numerous factors to consider when introducing new drugs to the market.’’
He says Pharmac is a worldclass funding model and it means more New Zealanders get access to drugs than would otherwise be the case.
‘‘The Government respects the independence and impartiality of Pharmac.’’
Clark says it’s not for politicians to second-guess the experts at Pharmac about which drugs it singles out for purchase.
‘‘This Government is committed to a well-funded public health service and will continue to support Pharmac to do its vital work.’’
He says the desire for the latest cancer treatments by New Zealanders suffering from the disease is completely understandable.
‘‘However, there does need to be good evidence to support the case for funding them.’’
Before the general election, Labour said it supported Breast Cancer Aotearoa Coalition’s campaign for better access to cancer treatments and would fund an early access scheme for medicines.
This was so New Zealanders could access life-saving drugs when there was no funded alternative.
Clark says he’s asking for advice from officials about the case for establishing an early access scheme.
‘‘That advice hasn’t been provided to me yet.’’
A Pfizer spokeswoman says the company believes Ibrance is an important treatment option.
‘‘Pfizer submitted an application to Pharmac for Ibrance to be funded in February 2018, and is now working through Pharmac’s process with the goal of improving access for patients in New Zealand.’’
‘‘The biggest thing was the shame, it felt like shame. The shame of having to ask for help.’’
Wiki Mulholland