Update: 13 September 2019 – Unexpected and incredible NEWS!!!!!
14 September 2019
So, late this week, in a completely unexpected and unbelievable chain of events, it was confirmed that to our utter surprise, the pharmaceutical company who supplies the new drug that I have begun taking, has provided me with a compassionate access scheme.
A compassionate access scheme means that the drug company has agreed to provide me with this drug FREE OF CHARGE!!!!! As you can imagine, we were and still are completely stunned and obviously delighted as we had no idea that this was even a possibility.
I had asked about this before even making the decision to start taking this life saving medication and mentioned it to my oncologist (the oncologist has to request this from the pharmaceutical company) but it didn’t look hopeful as many others had tried before and failed.
Unbeknown to us, the oncologist had submitted a request for this and much to his and indeed our surprise, they have agreed to supply me with this drug due to meeting certain conditions that were required, in terms of my medical situation and diagnosis.
I am still a little vague on all of the specific details of this agreement but my basic understanding is that they will continue to supply this to me for as long as it continues to work. Each month, we need to reapply to get a new script.
I can’t even begin to tell you what how shocked and surprised we were and just so incredibly relieved to hear this news!! It was truly the best news we have had in a very, very long time and just provides such a sense of relief to know that right now, finances will not be such a huge concern for us. I can keep focusing on my health and family and not worry about how we will afford to get the $11,000 for the next month’s supply to keep me alive! Just so, so grateful.
Obviously, this now means that we will not need to keep asking for financial support as whilst we have had to cover the cost of the drug up until this point, hopefully it will be smooth sailing to get hold of it via the pharmaceutical company each month.
We are so, so incredibly grateful to each and every person who has helped us to raise money on the GiveaLittle page, we couldn’t have managed without your support and feel blessed each and every day by the overwhelming generosity and support that has been shown to us. Such incredible people, all of you, who have contributed not only money but also the most beautiful comments and words. I couldn’t have asked for a better response or outpouring of love and support. In fact, whilst I would really rather not be fighting this awful disease, the one truly remarkable and memorable thing that has come out of all of this, is the kindness and goodness of people. Each and every moment of each and every day, I feel overwhelmed by this and truly lost for words.
The much-appreciated donations have helped to cover the unfunded medication and medical tests to date. We cannot begin to explain how much it has helped my husband and I in this difficult time.
Of course, going forward this will not be the end of the road in terms of medical costs for us as there are so few drugs which are funded by Pharmac for lung cancer and sadly the new government cancer initiatives do not address this in the current plan. I am hopeful that this will change over the years but to keep fighting, we are going to need to keep searching for the best options medically and try to utilise these to fight my cancer for as long as possible. Along with this, due to your generosity and the news of the compassionate access to the medicine, I feel that at least this will give me the opportunity to slow down at work as and when required, without feeling the burden of this. I can then spend valuable quality time with my family and friends.
I have no idea what the future holds but I am optimistic and you have all helped me and my family tremendously. I am going to keep fighting, keep researching and keep positive along with taking each day as it comes.
Kia Kaha