What Cancer Survivors Need To Thrive
Stefanie Veraghtert is a serial social entrepreneur and a young cancer survivor with a passion for coffee and people. She was diagnosed with late-stage cervical cancer and metastasis at 26 and managed to overcome them against the odds. In this interview we dive into her experience and what needs to be changed to help cancer survivors, based on her own struggle and work in the last five years, where life has pushed her to grow in ways she never thought she would when she decide to embrace that cancer (the big C) and make a positive shift. You can learn more about her in her social entrepreneurship and Big C coffee websites.
What’s the current situation of Cancer survivors in Belgium like?
You can not really talk about the situation of Cancer as a single entity: there are over 100 different types of cancer with different treatments and procedures. What is common is that the patient goes through the same process and has to face the challenges of diagnosis, treatment, and survival. Some communities of survivors are better organized, and some are somewhat discriminatory to other forms of cancer. The first cancer support group that is not based on the type of cancer is FLAYA, a young cancer support group.
Prevention and treatment are very advanced, but we need to open the scope. If more and more people are being cured and their life expectancy is increased: how are you going to guarantee their quality of life? How are you going to help them to pick up the pieces and remake themselves and their lives after such an experience?
There’s nothing to help survivors. It feels like the healthcare system tells us “goodbye, you are on your own, come see us when you have cancer again”. Everybody is curing our bodies but nobody is helping with the mental quality of life. We are persons, not just bodies. Our bodies get cured over and over, but the person, the mind, is not taken into consideration.
When I was diagnosed with stage four cervical cancer I was given a 5% to 10% life expectancy. I lost my job and my life in Paris. I had to move back to Belgium. I did not even think that I would survive. How am I to put it all back together by myself after all this as nothing had ever happened?
The thing that all survivors have to face is that society does not treat them the same anymore. When I was diagnosed with cancer at 26 I thought that there would be a program to reintegrate after treatment. As a social worker, I expected that from my experience in other fields, but there was nothing to help. We face a lot of situations that instead of helping put us down: we are considered not productive, we can’t get loans, we can’t get life insurance, we are moved to the back of the queue for adoption… This situation is what pushed me to start my own social enterprise to promote post-cancer, healthcare, and quality of life.
What matters the most is to not give up your dreams. We have a bigger load to carry but we can get to do what we want and fight for it.
Which changes would you like to see happening?
I would like to see more resources and care put into the post-cancer journey. Our bodies need to recover and the side effects of cancer and its treatments have a big impact on our lives. There’s no formalized advice to help us face post-treatment situations that for most people are no-brainers. Let me give you an example. I’ve gotten diagnosed with skin cancer too (nothing to do with my first cancer, this is just bad luck) and things are looking good, but with the good weather that we are having these days fear is settling in about not knowing how to correctly protect my skin and eyes. The hospital where I was treated does not offer a guide that helps after treatment, there’s no holistic approach. It feels like the hospital only cares about treating and invoicing and not about what comes after that.
The legal framework has to change too for patients to get paid for the advice they give. It is not only a question of quality of life, it is also about professionalisation and outcomes: we could then do more serious research, do more consistent work over the long term and reach a higher level of output. Right now there are problems with pharma working with paid patients. How are these patients going to pay their rent and expenses, with the flowers and gifts they receive for their participation? The mindset has started to change inside companies: they really want to help patients and are willing to make changes, but there are a lot of roadblocks. Something they all could do is to hire more survivors as their regular workforce.
In my case, I’ve taken the reins and decided to professionalise and help others with my visibility and profits. As a patient, I did a lot of research and studying. I also did a lot of speaking out on the things I did not like and started getting invited to panels and meetings. This meant that I ended up working the equivalent of two full-time jobs as a volunteer. Thankfully a friend told me to become a professional and that’s what I’m doing. Some big pharma companies started reaching out to hire me and to send me around Europe as a speaker (as you can imagine, COVID has brought all the traveling to a halt). I am on a mission to help organizations increase their positive impact, stimulate entrepreneurship and accelerate the change I want to see in the world. I’m all about social entrepreneurship, impact, positive change, and motivation.
I also launched my coffee social enterprise to inspire and empower with my story, determined to make a positive impact on the individual and community levels.
What advice would you give the participants of Hack Healthcare to provide solutions for Cancer survivors?
Listen to patients and involve patients. Don’t only look at as sufferers, those are the wrong glasses. We are the same as everybody and should be redefined as patients to bring us on equal footing.
Make sure that patients and their relatives don’t get intimidated by the high achievers at hackathons, give them space treating them at the same level.
Some patients need help to reach a higher level of professionalism. It would be good to give some skill-building workshops to patients and families the day before the event to help them understand the ecosystem, where the money comes from, and goes to.
Remember that there are different layers of patients: some are more passive, others are in support groups, some like to share their story (it is a form of healing), some want to use the competencies that they had before developing cancer (some even work in the pharmaceutical world!) and would be a great fit for becoming employed or founders, some are directly involved in the teams…
What brings you to Hack Healthcare?
This is part of the voluntary work I still carry out (about 10 to 20% of my time). Beyond sharing my experience and ideas I want to meet people working with pharma to understand them better, learn, and get ideas and information for my keynotes.