Submission on Pharmac

In a few weeks, I will be making an oral submission on the need for Pharmac to be reviewed. Does Pharmac already do a good job? I don’t know, and I am obviously biased as I am currently paying $6,000 every four weeks for drugs that in other countries are funded.  What does a review even mean? Personally if it becomes a general pat-on-the-back-fest then little will have been gained. But if it is a well considered review of how we can improve the survival rate of stage four cancer then it can only benefit the country, too many women are dying of breast cancer – with a median life expectancy of only 16 months.

Below is the current draft of my oral submission. It is meant to be 5-7 minutes long and is slightly longer than that at present so any thoughts welcome! At this stage I’m relying on nerves making me speak faster than in practice lol.

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Speech to the health select committee

Morena,
My name is Rachel Brader.
I am 44 years old and I have advanced breast cancer.

I am an equities research analyst, and mum to Ivy, who is 6, and Clark, who is 7.

Last year I went to my doctor because I had noticed some odd changes to one nipple, it didn’t fit the criteria I’d read online for breast cancer, but it was a change so I thought I’d better get it checked out. My GP sent me for a mammogram, and in June the radiologist told me that i absolutely definitely did not have cancer. At that stage I didn’t know that the reason that the screening program starts at 45, is because of the high rate of false negatives for young women. Apparently the radiologist didn’t know either.
Fortunately my GP was smarter than both of us and she insisted on a second opinion at Wellington Hospital.
So, very begrudgingly, I was subjected to a range of poking and prodding by numerous doctors, registrars, nurses and MRI technicians. And six days after starting a new job, i found out not only that did I have cancer, but that the tumour was 6cm, and had spread to my lymph nodes and I would need a mastectomy.
And, then, to add insult to injury, further scans showed that it had already spread to my bones.

I was dying of cancer and I didn’t even feel slightly ill.

Following surgery, my oncology team decided I needed systemic chemotherapy first, and then I would be put into chemical menopause, be given aromatase inhibitors, and palbociclib.

My oncologist then told me that palbociclib was not a funded treatment in New Zealand and would cost me around $6,000 a month, to a total of $66,000 when the Pfizer funding assistance programme kicks in.

I didn’t have a spare $6,000 a month or $285 dollars a day. But without it I would have an average of 10months good quality life before needing more chemo. By which time Ivy would still be 6, and Clark would have turned 8.

I have done three months of chemotherapy and while I did manage to work occasionally during that time, I am still struggling with the effects, my hair is starting to grow back, but the chemo induced fatigue is still slowing me down. I honestly don’t know if I could cope with more chemo, even if it were to keep me alive for a few months longer, what is the point of being alive if you can’t get out of bed or enjoy your children?

My mother is planning on using her retirement savings to pay for my Ibrance. She is willing to pay $66,000 to help keep me alive because I’m her daughter. $66,000. I didn’t cause my breast cancer, but here I am feeling guilty that my mother has to do that for me. And for her. And my kids, and sisters, and friends, and all the people in my life. So to help, my sister Lucy set up a givealittle page for me. I am mortified but what can ya do?

I am here today to plead my case, on behalf of all the people who just want to receive the appropriate care for their condition. Not gold plated, not alternative, just the standard treatment. Palbociclib isn’t some new fangled untested drug. It is the guideline for standard care as recommended by the Advanced Breast Cancer Global Alliance. We do not yet fund palbociclib NZ and we have one of the worst death rates from metastatic breast cancer. Something is clearly wrong.

I am calling for an inquiry into how Pharmac funds advanced cancer medication. As i understand it, the request to Pharmac for palbociclib was made by Pfizer, for palbociclib to be used as a first line treatment. I see a number of issues with this. Firstly, why is it Pfizer that makes the request? There are other cdk 4/6 inhibitors. Should we be relying on the drug companies to approach Pharmac or is there a better way.
The second issue is that the request was for first line treatment only. The vast majority of women using Ibrance today have had other treatments meaning they would not qualify under the first line requirement. Even I, who was de novo metastatic, would not qualify as i had to have systemic chemotherapy first and I was not in menopause.
Thirdly, this is a draft recommendation. There is still a long way to go before anyone receives fully funded Ibrance.

I am calling for an inquiry into how Pharmac funds advanced cancer medication. I believe the focus of the inquiry needs to be on ensuring world class care for patients with stage 4 cancer. It needs to consider how drugs are brought for funding, what level of evidence is required, particularly for something that is already the standard care world wide, and how to provide faster access to new drugs for those with life limiting conditions.

Finally I’d like to leave you with a thought. In 2018 380 people died on New Zealand’s roads. However, we don’t yet know how many people died of cancer in 2018, the most recent mortality statistics for New Zealand are from 2016, and they are still provisional. But in 2016, 9,516 people died of cancer. 673 of them from Breast Cancer.

Thank you