Caroline's story
We are very sad to say that Caroline, one of our patient leaders, passed away at the start of 2018. Caroline was with us from the beginning of our work - a wonderful woman, dedicated to making life better for other patients like her who are impacted by secondary breast cancer. We leave her story here and tributes from those of us at Just Treatment who worked with her below, as a testament to her life and commitment to the fight for fair and just access to health. Our thoughts are with her family and friends.
CAROLINE LEE
I have been receiving different drugs for breast cancer for four years. The latest drug I'm on, Kadcyla, was £90,000 at the time I needed it. I literally got accepted for this drug in the last few days before it was removed from the Cancer Drugs Fund.
The drug has given me six months of life so far with my children; I cannot tell you how much life I have packed into, what some might consider, this short space of time. I have been able to live a relatively normal life - holidays, activities with my children - but most importantly I’ve been able to make memories.
More and more people are going to get cancer over the next ten years. Whilst often there is sadly no cure, there are medicines to treat the disease. I can't imagine life if I'd not had access to Kadcyla. Maybe I wouldn't be alive today? I can't bear thinking about it. I'm 37 years old, a mum and a daughter. Don't I and others deserve to live a bit longer by being able to access the medicines we need?
Prices need to come down. It's not fair that people are dying too soon while drug companies are getting richer off the back of that. If more people are living with cancer and costs of drugs don't go down dramatically, a lot more people will die early.
I feel passionate about this plight - I want to make a difference to people's lives in the future when I'm gone. People deserve more. Their lives should be valued. We must change the law so that people don't have to worry about whether they will be treated or not and whether they have to find their own money for their own drugs. I believe if the general public knew the real truth combined with real patient stories they would want change too.
“I feel passionate about this plight - I want to make a difference to people’s lives in the future when I’m gone.”
A secondary breast cancer patient, mother of two girls and a passionate campaigner, Caroline decided to get involved with Just Treatment over the summer of 2017. She was an inspirational woman who was determined to use her precious time to fight for improved access to treatment for women across the UK.
We feel hugely grateful to have known Caroline. Her insights and passion helped to shape Just Treatment at the very beginning of our movement, and we hope that in some small way we will be able to continue to pay tribute to her through the work that we do in fighting to improve access to treatment for patients across the UK. On this page we have brought together some of the tributes that have been paid to her by Just Treatment leaders and staff who knew her and campaigned alongside her.
“Caroline was beautiful, charismatic and showed the world that her diagnosis wasn’t going to define her or to stop her living life to the full all while having the strength and spirit to fight for the rights of other cancer patients. I feel so privileged to have met her and worked with her, she leaves a legacy with all of us lucky enough to have met her.”
Melanie Kennedy, Northern Ireland
“The only time I spent with Caroline was at our training weekend, and she was brilliant. She was passionate and compassionate and honest. She had a huge amount on her shoulders and she still managed to find the energy and humour to engage in everything - never shying away from asking questions or giving a perspective that we all learned from. I hope we can do her some small honour by keeping up the fight for a more just medical R&D system and equitable access to medicines.”
Diarmaid McDonald, Bristol
“It was great working with Caroline and she will be sorely missed.”
Simon Brasch, London
“It was such a pleasure getting to know Caroline last year and I was so inspired by her, and her determination to get stuck in. She was a hugely kind and compassionate woman, who was determined to use some of the little time she had to make a difference in the future to others. Her death is a great loss and I’m just thankful that we were able to spend the time that we did with her.”
Elizabeth Baines, Bristol