Why do we do what we do?
Last week I attended the Personalized Medicine Coalition (PMC) conference. I ENJOYED it. The line up of presenters, panels and contents was perfect. Discussions about politics, investments, return on investment, latest device and treatment developments and their trends, and its influence on current and future healthcare AND how this affects THE PATIENT.
Patients, who regarded themselves in remission or survivors, shared their own personal stories and experiences. Absolutely inspiring! If you need inspiration, go read about Bonnie Addario what a beautiful person.
It has a deep impact on me when I hear about how & when patients find out about their disease and what it does with them, their well being, their thinking, their mind, their body, their mood, their emotion and their inner circle. So, actually, to all of us. Let me start using the first personal pro noun from here onwards.
What even has more deep impact, is we share our hopes, our fight, our battle, our journey. Our hurdles we HAVE to overcome to obtain the final diagnosis and our optimal management plan that fits us the best. That we do NOT give up.
At the same time it saddens me. I hear you ask WHY, isn’t it fantastic to hear these stories from survivors, who give us hope, who INSPIRE us to keep doing what we do. Isn’t that making you happy? Yes, THAT makes me happy, but it is SADDENING that it is not a given that most of us are cured, are feeling better, have been successfully treated or are survivors. Often it is the opposite. Often we don’t even know our final diagnosis for years, but treatment starts anyway because time is of the essence. Sometimes the treatment is trial and error, sometimes it is because science has proven that a typical treatment plan is the best option for largest proportion of the population.
How can it be, in this era, that we do not know our diagnosis for years? Here is my answer: the system is broken. It is not the persons who provide care, it is the system. All over the world. Globally. This conclusion is based on simple observations, such as “sorry the size of these blood collection tubes is different than we usually use, so we won’t be drawing blood for ctDNA testing” or “there is a suspicious lesion identified on the ultrasound and we need to follow up as soon as possible. Can you come in in about 5 weeks, because we have a waiting list” or “this molecular test will only be done after we know more” or “it comes with age”.
I find this unacceptable. There is more than this. And it is up to us to make it happen. And that is why I do what I do.