The idea behind Patients Are Also Experts is the fact that the medical industry has ignored their most valuable resource, the patient and survivor!
I was diagnosed with stage 4B reoccurring Hodgkin’s lymphoma in November 2009. This was a difficult pill to swallow. I endured 15 rounds of chemotherapy and one Autologous stem cell transplant. Over the last 10 years, I have seen both sides of what it’s like to be a patient and a survivor of cancer.
In July 2019, I was re-diagnosed with Hodgkin’s Lymphoma. After 8 1/2 years in remission, one of the things I had going for myself is an understanding of what I was about to experience, again! Obviously there was going to be some new challenges, but at least I have an idea of what to expect.
What has stuck out
I’ve noticed between the 10 years of both diagnosis is the lack of survivorship care and collaboration between everyone in the healthcare industry. Politicians, Big Pharma, Large nonprofits, Hospitals, Insurance companies, and Government. This became incredibly apparent and reinforced my views and opinions when I saw what my insurance has paid out in claims.
It’s well documented that the biggest issue concerning cancer is survivorship programs and after cancer care. Because if you think about it there’s no money in survivorship. The agenda becomes very clear for each and every player in cancer and the medical industry.
Challenges are Real
The challenges of cancer survivors are immense. From finding a job, getting affordable insurance, medical needs. Even financial needs like getting loans and mortgages. It’s safe to say that when you’re diagnosed with cancer, the quality of living becomes more difficult. Life all around is more complicated.
For me, at this point, my goal is to live and survive a reasonable life! All of this treatment and procedures have most likely limited the time that I have left. And I will continue to deal with the side effects and difficulties that come along with having cancer.
I see things going in a good direction
Over the last three or four years, I have recognized more being done in the survivorship and patient side. As technology in the medical field continues to get better, the physicians and patients are reaching a collective understanding that cancer can no longer be a one-size-fits-all approach. And the involvement of the patient and survivor is a key element. This was previously forbidden.
There are still a lot of hurdles to jump before this is common practice. My involvement with support groups and online chat rooms has shown me there is a mutual understanding beginning to take place. And conversations with other patients is showing that there is a bigger need for the medical industry to start treating us as an expert!
I truly believe Patients want to help!
Cancer patients and survivors have a need to be heard! In today’s day and age, a hurdle that must be overcome is with Big Tech stifling information, insight, knowledge, and wisdom into what our experiences can bring to the table. We have not been deemed experts in the eyes of Big Tech and the Medical Industry. Take Googles 2018 Medic Algorithm update for example. This stifled countless cancer survivors’ and patients’ opinions and messages that they created with the intention of helping others currently going through a similar situation and those in the future.
I’ve spent the last decade learning and sharing information with others going through cancer. But, I’ve done it the old-fashioned way, over the phone, or more currently through direct messaging on social media platforms. Completely organic. My conversations are in-depth and insightful.
I believe that working together will not only find common ground but to conclude what is best. This will help all parties successfully move forward. Especially when patients become empowered.
But I have faith…
As cancer survivors and patients, we don’t care to be looked upon as another number. Or another comma in the bottom line of the healthcare industry. Being the one that endures all the treatment regimens and procedures not only qualifies me as an expert but as a resource that should be tapped. To help make the next patient’s journey as easy and painless as posable!
Or maybe we need to straight-up involve ourselves. As I was checking into the hospital for my second round of IGEV, I got to help teach an assisting medical student about my Port. Explained to her about what kind of port it is and know where to access. I got to explain to her what it feels like under my skin. Even the nurses learned something new.
Remember, there is a level of expertise that only those who have the experience of living through cancer can know! That’s why patients are also experts!