In this edition, Craig Cole, MD, speaks about empowering patients to make treatment decisions, targeting racial disparities in myeloma, and more.
Where did you grow up? What was your childhood like?
I grew up in Detroit, and had an average 1980s childhood, watching Star Wars and Saturday morning cartoons. My mom was an elementary school principal and my dad worked as a cataloger and engineer for machine parts for the U.S. Army, so my childhood was filled with intellectual pursuits, as well. I was reading the encyclopedia for fun at the age of 8.
What did you want to be when you grew up?
I aspired to be an astronaut and astrobiologist, but that changed when I was 16 and my dad was diagnosed with colon cancer. This was in the 1980s, when treatments for nausea and vomiting were ineffective, the pain regimens were poor, and the side effects of chemotherapy were tremendous. So, I watched my dad go through a horrific experience getting treatment for his colon cancer before his death.
A couple of years later, my grandmother, whom I was very close with, was also diagnosed with colon cancer. My grandmother was a licensed practical nurse and the only person I knew who worked in health care. My dad’s cancer influenced my future career to an extent, but my grandmother’s illness had a much greater impact.
How did your close family members’ cancer diagnoses affect your career path?
I was at Michigan State University when my grandmother was receiving cancer treatment. One day, she called to ask me to drive her to an oncologist appointment. I was happy to skip class and help. When I arrived at her house, where my mom was helping to take care of her, I was devastated to see the amount of pain she was in. Just hitting potholes in the road during the half-hour drive to the clinic caused her pain, so I drove slowly.
I’ll never forget what happened next: Her oncologist barged into the room and announced, “Your cancer’s worse and we need to give you more chemotherapy. We’re going to start on Monday.” The doctor started to walk out the door, but my grandmother said, “Stop. I don’t want any more chemotherapy. I want to go into hospice. I’ve had enough and I want to work on my quality of life.”
The doctor turned around and started to hurl insults at her about how she was wimping out on her therapy. “You’ll die on hospice. Don’t you want to live? Don’t you want to do this for your son?” And my grandmother responded, “That’s my grandson. I want to go into hospice. That’s my decision.” Her doctor said, “I don’t support that decision, so good luck” and walked out.
I was beside myself. My grandmother simply turned to me, smiled, and said, “You can take me home now.”
As I was carefully packing her back into the car, she said, “I think you can do a better job than that lady.” Her words turned my life around. I said, “Yes, I think I can too.” I immediately changed my major to pre-med and my grandmother died comfortably in hospice care.
That was 30 years ago. I’ve always looked back and wondered, Why did she call me that day? She could have had my mom take her to the appointment, but I think she wanted me to witness that interaction, to see how her doctor was treating her patients. She wanted me to know that she saw something in me that could create change.
Cancer is a terrible thing – my grandfather died of prostate cancer right before my grandmother and my mom died this past September. But, great things can happen from terrible experiences. As a doctor, my passion has been giving people options – not just walking into the room, telling them how they are going to be treated, and walking back out the door.
When my patients start treatment, I tell them, “During your treatment, you will know more about myeloma than I ever will because you will have experienced it. My job is to empower you to understand what’s going on and make informed decisions.”
They say, “There’s no way.” Six months later, though, I’m talking with them about research, therapies, and their disease’s status as if I’m talking with a colleague. It’s tremendous to see patients evolve from feeling uninformed and vulnerable to knowledgeable and empowered.
What drew you to hematology, and specifically myeloma?
I was set to be an oncologist when, during my residency in 1999, I attended my first American Society of Hematology Annual Meeting. This was the year when Brian Druker, MD, debuted imatinib as a treatment for chronic myeloid leukemia (CML). I remember watching the presentation and seeing the slides all read “99%” or “100%” response rates. I turned to the person next to me and said, “You can’t even give a blood pressure medication that has a 100% response rate. This is incredible.”
People were cheering. It was an amazing moment. The researchers clearly understood the science behind CML and built a drug that worked 100% of the time. I thought, That’s what I want to do. I want to figure out the science of the cancer and use that science to treat it and cure it.
I focused in myeloma because the science was there, waiting for someone to pick it apart. When I learned that myeloma affected African Americans twice as often as any other ethnic group, I thought, CML is already taken; myeloma is an area where I can, hopefully, make a difference.
Tell us about your work to erase disparities in myeloma care.
Michigan State was a haven from the real world: People of all races and religions were happily eating together in the cafeteria and there were diverse crowds at every bar I went to. To my 21-year-old eyes, there were no racial disparities on campus. I thought the whole world was like East Lansing.
When I went to medical school at The Ohio State University and did my residency at the University of Michigan, I started to see the stark racial disparities in patient care and the disparities between academic centers and community centers.
It was a shock. As an undergraduate, I thought that health care was fairly distributed – a patient chooses not to go to certain centers and can seek out different providers. Witnessing the inequities in care during my training was a wake-up call.
As I completed my training, I carried that experience with me, waiting for the opportunity to effect change. There are biological disparities in myeloma – as in the incidence of the disease and some of the cytogenetics that we now know about – but there are also great disparities in care. What can we do about them?
For the last decade, I’ve been highlighting these disparities and raising awareness, which is the first step toward erasing them. If patients and physicians don’t advocate for greater equality in care, we will never change the statistics that show poorer outcomes among African-American patients with myeloma. I am incredibly thankful to work with the International Myeloma Foundation, the Leukemia & Lymphoma Society, and other patient advocacy groups, and with fellow myeloma physicians and researchers who have taken up the cause with me. I don’t feel as alone as I did a decade ago.
Over the past three years, there has been an incredible velocity behind trying to examine these racial and ethnic disparities in general health care and especially in myeloma. It was frustrating to be one of the few people looking into these inequalities in the beginning. If I could step into a time machine, I would go back and tell my younger self, “They’re going to listen, just hang in there.”
What do you see as your greatest career accomplishment?
My greatest accomplishment is being able to fulfill my grandmother’s wish for me from all those years ago. Right before this interview, I was meeting with an African-American woman who has myeloma that hasn’t responded to seven therapies. We sat down and spent an hour talking through her options. That empowered her to make a treatment decision that we are all happy about. After our conversation, she smiled and said, “I’ll see you next week to discuss this more.”
What happened to my grandmother was terrible, but I think that experience has become a gift that I give to people now. Today, I can talk with a little old lady just like her and help that patient make a decision that is good for her life and her family. Among all the things that I’ve done, being able to do that on a regular basis is the crown jewel of my career.
Tell us about your life outside of medicine. What do you do in your off-hours?
My wife and I have three daughters: 10-year-old identical twins and a 14-year-old. I’m still a big Star Wars fan, and now my kids and I read all the books and comics and watch all the movies together.
We also like to travel and hike as a family. Our goal is to put our toes in all five Great Lakes. We’ve crossed Lake Superior off the list but have yet to swim in Lake Michigan or Lake Erie. I love this region, and part of what interests me is that there used to be a coral reef in this area about 300 million years ago. Lake Superior is interesting because it is relatively new. The water is cold enough that it doesn’t support much life, so it’s not full of fish or seaweed and the water is unbelievably clear. Since there is not much biology, its beaches are made up of mineral rocks, bright green copper and red iron. You can find evidence of the coral colonies in Petoskey stones, which are smooth coral polyps that have been fossilized and worn down by weather. From traveling around the lakes, my family has a box of 365-million-year-old corals we’ve collected.
At home, I have a 150-gallon saltwater aquarium where I’m trying to reproduce a coral reef in the middle of Michigan. I have my corals that I’m trying to keep alive in my tank and, above that, I have pieces of the 365-million-year-old coral that I’m trying to recreate.
What is one thing most people don’t know about you?
No one would ever guess that I won a dance contest in college. It was at a residence hall government meeting. Someone pushed me out onto the dance floor and I just wiggled my body as long as I could. Suddenly, I was the only one left standing on the dance floor. I might have won by default – all the other people quit so I would stop doing whatever I was doing.