My mother was not a typical patient with cancer. She was an oncology nurse with more than 30 years of experience and a string of acronyms after her name that was nearly as long as my arm. At the time of her multiple myeloma diagnosis, she had been working at Amgen, one of the largest biotechnology drug companies, for nearly a decade.
An Atypical Patient
She was hit with a double whammy: in addition to discovering her cancer in the late stages, she also had 2 genetic mutations, which placed her disease in a high-risk category. We received a grim prognosis of less than 30 days to live, even with treatment.
But my mother was an atypical patient, because she had the expertise to guide her care and had a Rolodex to connect with top researchers and cancer centers around the country. So less than 2 weeks after her diagnosis, we were on a plane to the University of Arkansas in Little Rock to enroll her in a clinical trial.
This clinical trial helped my mother to prove the doctor’s prognosis wrong, by surviving and fighting her multiple myeloma for almost 2 years. They were 2 long, hard years for her and for our family, but there were 2 years that we were able to share with her, when we had been expecting far less. This also was my first glimpse into the important role that clinical trials and research play in our understanding and treating cancer.
Trials and Tribulations
During a 5-year period, I was either the primary caregiver or part of a caregiving team 4 different times. I remember sitting at an appointment at a major cancer research center after my father-in-law, John, had just been diagnosed with pancreatic cancer. The doctor never addressed clinical trials. Fortunately, or unfortunately, we were experienced enough to ask about potential clini-cal trials. We were told that John wasn’t eligible for any trials at that center but we could search for trials online, and they would discuss them at our next appointment.
Even after limiting our search to a small geographic area, we found more than 350 clinical trial options. What were we to do? Where could we turn for help? Was he really eligible for these trials? Were they still open and accepting patients?
We were never able to enroll John in a clinical trial. In fact, my mother was the only patient I have cared for who participated in a trial. Given her background, it is easy to understand why, but it also revealed a deeper issue. Patients shouldn’t have to have decades of medical experience in order to find eligible clinical trials.
The system had failed us.
In late 2014, I launched SparkCures to help patients with multiple myeloma find, understand, and connect with appropriate clinical trials. We spent most of our first year speaking with patients, caregivers, doctors, nurses, and pharmaceutical companies from all over the country to better understand the “disconnect” from all sides.
From a patient standpoint, we describe the problem this way: you don’t know what you don’t know. You can’t search for something if you are not even aware that it exists. For patients who aren’t familiar with clinical trials, the publicly available information is often outdated, “medically dense,” and difficult to find. I saw patients and caregivers from all over the country struggling with the same issues we had, issues that my mother was able to overcome thanks to her background.
So we started by working backward from what we call our “Patient First” approach. We wanted to provide the same level of access and understanding that my mother had to all patients with multiple myeloma. We went from one support group to another around the country. At the beginning of every event, we would ask people to raise their hands if they have ever had a conversation with their doctor about clinical trials. We still ask that question, and at our last event, less than 10% of the people raised their hand. This is not an uncommon response.
A Shifting Landscape
Many patients and their family members are surprised to learn that clinical trials are not an option of last resort, but clinical trials are available for every stage of multiple myeloma, including patients in precursor stages and for newly diagnosed patients. There are clinical trials for patients who have had 1 line of therapy, several disease relapses (returning) after treatment, or for those with refractory disease (not responding to treatment).
This does not mean that a clinical trial is the “right” option for any patient at any point; the challenge for patients is that every time they receive treatment, some clinical trials will disappear forever, and others will become available for the first time. Clinical trials are a constantly shifting landscape of options that should be considered at every treatment decision.
Once patients are aware that clinical trials exist, the issue of access remains. Where do you go to find and understand options that may be appropriate for you? Our answer was to develop a service that matches patients with multiple myeloma to clinical trials in the United States based on the patient’s history and the trial’s requirements.
Important Questions to Ask
Once patients see their personalized matches, they often have great questions about the trial, including:
- What is known about the experimental drug?
- What is the purpose of the study?
- Is financial assistance available for travel, lodging, and/or meals?
- What parts of the trial will be paid for by insurance, and what will be provided by the study sponsor?
- How often will you be required to visit the study site?
These are important considerations that are usually not fully addressed until you are in a pre-screening appointment with the trial doctor.
We need to set better expectations. Patients should understand what to expect if they participate in a trial, and what the trial will expect of them. That’s why we’ve developed relationships with clinical trial sponsors (including pharmaceutical companies and cancer research centers) to provide patient-friendly information that is not typically available anywhere else.
In late 2016, we added the ability for patients and family members to speak with us directly. One of the most common things that people say when they call us for the first time is that up to this point, they had felt like they were on their own. We have never considered this to be a pat on the back, but rather a problem that needs to be corrected.
One Spark at a Time
We are working day-by-day and patient-by-patient to help make better access to clinical trials a reality. Multiple myeloma is still incurable, but the only path to better therapies—and one day a cure—is through clinical trials.
My mother was given 2 additional years thanks to the patients before her who participated in research initiatives, and I’m proud that my mother’s participation is playing a role in helping other mothers, fathers, sisters, brothers, and grandparents live longer with multiple myeloma.
If you are wondering how I came up with the name SparkCures—I once heard the quote from the famous Italian poet Dante, “A mighty flame followeth a tiny spark.”
We believe that every patient who participates in a clinical trial is a spark. Our mighty flame is a cure, and our job is to help ignite it by creating more sparks.