I had been working in the pharmaceutical and biotechnology industry for more than 20 years when my father was diagnosed with head and neck cancer. From the inside, looking out, I’ve seen all the innovative new treatments our industry has developed, the advances that have been coming to fruition for patients at a record pace over the last decade.
In 2017 alone, the FDA approved 16 new medications for different types of cancer, as well as approvals for new uses of cancer drugs that were already available for some conditions. Since 2010, the FDA approved more than 100 new anti-cancer medicines. The future of cancer care seemed bright.
Outside, Looking In
But then, after my father’s diagnosis, I was suddenly on the outside, looking in. As a caregiver, I experienced a treatment landscape that was complicated and difficult to navigate, even with my extensive experience in the industry, and a patient experience that was frustrating, inconvenient, and uncomfortable.
My father died 2 years ago. He never gave up. When our doctor in my father’s hometown of Kenosha, Wisconsin, told us there was nothing left to do, we were able to find another doctor in Milwaukee who was willing to try more. When radiation was no longer effective against the recurrent tumors, we were able to enter him into a clinical trial for a new systemic immunotherapy.
We were fortunate to have family members who knew to recommend the second specialist, and my professional expertise helped us find the clinical trial. Unlike my father, many patients don’t have access to the same resources or knowledge.
The major cancer centers only make up about one-third of all hospitals in the United States, and traveling to a cancer center in a big city such as Milwaukee for a second opinion is not an option available to all patients.
Navigating ClinicalTrials.gov online can also be overwhelming. Overall, there is a steep learning curve to understanding what options are available for each patient and each cancer type.
Even beyond the search for the right treatment and the right doctor, cancer presents unexpected challenges. During my father’s treatment, he was also taking a blood thinner for a cardiovascular condition, which he needed to be weaned off of before he could have a surgery to insert a port to deliver the chemotherapy he needed.
However, because of a communication error between physicians, the dose adjustment he needed was not made, and my father suffered a mini-stroke in his oncologist’s office.
It’s maddening that this is a problem that hurt my own father, and could potentially affect many other patients; we need to help find solutions to help streamline communication between physicians and coordination of care.
Sometimes, patients have difficult choices to make during the course of their treatment. Treatment is often uncomfortable, and the best care may be a long distance away from home, if the local providers are not equipped to treat the specific cancer type.
Undergoing treatment too often means giving up time for hobbies and other activities that patients enjoy, and in many cases, the treatment can seriously limit the patient’s autonomy.
More Work to Be Done
At Astellas, we pride ourselves on working hard to meet the unmet needs of patients, to help complement our efforts to deliver innovative therapies. After experiencing cancer as a caregiver to my father, I realized that we have more work to do. However, although Astellas is focused on being patient-centric, we know we don’t have all the answers.
My personal experience caring for my father only reinforced that perspective. That was the spark of inspiration that eventually became the Astellas Oncology C3 Prize, an idea that had been developing within the company for 2 or 3 years before the program launched in 2016.
The C3 Prize seeks to help support the challenges patients experience beyond treatment of the disease, by answering the following questions:
- How can we help prepare patients to make the best decisions?
- How can we help patients manage the stress and anxiety brought about by diagnoses and the therapies that follow?
- How can we help patients overcome the changes in their lives, such as the extra travel time to the clinic, the need to remember to take medicines and keep in contact with their doctors, and the struggles that come with feeling chronically ill and exhausted?
The Caregiver’s Challenges
Before my father’s diagnosis, I thought my professional experience had prepared me to be a caregiver. I found out that although my professional experience helped, it did not prepare me to be a caregiver. With the diverse circumstances surrounding each patient journey, no one person, or one company, can understand every challenge patients and caregivers will face.
Even those of us who have had our personal lives touched by cancer know that every patient, and every case, is different. It’s essential that we share our experiences so no one feels stuck on the outside, looking in.
Only by working together will we be able to make a difference in cancer care, so patients can truly focus on living.