Raising funds to enable partner, mother and popular University academic Hilary Chung to access Ibrance to prolong her life
Auckland
Having metastatic breast cancer (Mets or Stage 4) means that cancer that evolved in the breast has spread to other parts of the body. Its favoured places are bones, lungs, liver and brain. (In my case it’s spread extensively through my bones and my liver.) There is no cure. It is terminal. Thankfully many women who get diagnosed with breast cancer often remain clear after treatment for years or for the rest of their lives and this makes it harder for people to understand that Mets is different. This site gives more detail about what it is like to live with Mets: https://www.fredhutch.org/en/news/center-news/2014/10/stage-4-metastatic-misunderstood-breast-cancer.html
People with Mets rely on oncology to stay alive. The drugs that are available work by containing the cancer and stopping its spread or slowing it right down. But they only work for a certain period of time. After that there is a gradual decline and people with this diagnosis can only expect a prognosis of two or three years. There is now a new drug that will double the ‘progression free period’ for those with hormone receptor positive metastatic breast cancer. (That’s me). It’s called Ibrance. Unfortunately in New Zealand this drug is unfunded.
Recently a petition was brought to Parliament asking for drugs like Ibrance to be funded by
Pharmac. See the link to the NZ Herald’s coverage here:
https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12141330
Like the women profiled there I am hoping for as much time as possible with my family. I also love my job at the university and want to keep making a difference to students’ lives and working with my colleagues for as long as I can. I have established a new degree programme - the Bachelor of Global Studies. It’s the only one of its kind in New Zealand. The first undergraduate cohort completed their first year in 2018 and applications are very strong for 2019. I want to stay well to be able to continue to grow this programme, see the first students graduate, see the masters in Global Studies established, to continue to teach global citizenship and intercultural understanding to the next generation of Kiwis. There is still so much to do....
I am doing all I can to maintain my life. I recognize the importance of diet and exercise in keeping my body as healthy as possible so it can fight the cancer. I eat a super healthy vegetarian diet, I paddleboard, do Pilates and bike to work and for pleasure: I am arguably fitter than I have been for many years. Still, the time I have left is very dependent on the drug I need.
Pfizer, the makers of Ibrance, offer a deal: patients pay $6000 a month for eleven months and after that the drug is supplied without further payment.
So I’m asking for your help. I have to find $66,000.
If you were able to contribute financially I would be forever grateful.
Thank you for reading to the end. Words cannot express my gratitude for any help you are able to give.
To raise funds to pay for the unfunded drug Ibrance to prolong the life of a beloved partner, mother and popular academic who has changed the lives of countless students.
Funds will be used to pay for Ibrance
Target is reached! 25 May 2019
Dear friends,
So much has happened since my last update that I’m pinching myself to be reassured that it is for real.
The headline news is that I’ve reached my fundraising target! This is so incredible and I’m feeling again the sense of total inarticulate inadequacy that I cannot express my gratitude properly.
The momentum that took my fundraising campaign over the line today was an interview which aired this morning on Radio New Zealand.
Here is the link to it and there are pictures in the gallery.
Before today I was already convinced that I had guardian angels watching out for me as the fundraising total kept edging up by significant amounts.
My heartfelt thanks go to all of you who have donated to my page. Your acts of generosity, have made so much difference to me. Now the burden of fundraising to pay for Ibrance, the drug I need to prolong my life but which is not funded in New Zealand, has been lifted from me. This is such a huge relief. More than that, I have now been on the drug for six months and I continue to be very well. The metastatic disease is controlled by the drug and there is no progression. Thanks to you all.
I am so well that I am able to travel to Europe to attend the Global Studies consortium conference. I will also take the opportunity to visit family in the UK, including my 86 year old mother. This may well be the last time I see her and my brothers and sister in person. I go with the blessing on my oncology team who are delighted with my current health. None of this would be possible without you.
You know that I will keep active and live as well as I can to honour your generosity. Last weekend I went searching for dolphins on my paddleboard and ended up going all the way from Mariangi Bay to Torbay Reef and back. Only afterwards did I measure the distance and discover that I’d paddled 12 kilometres in under an hour and a half!
This is what Ibrance enables. I will continue to deploy some of this energy to speak on behalf of other women with metastatic breast cancer in New Zealand, most of whom don’t have access to this drug. There are also many others who have terminal cancers and rare diseases for which there are curative and life-enhancing drugs which again the New Zealand health system does not fund. I will continue to advocate for change so that fewer people die prematurely.
Wishing you all good health and fulfilment. Life is precious.
Hilary
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