Journalist With Chronic Leukemia Makes Patient Empowerment His Personal and Professional Mission
Andrew Schorr began working as a medical journalist in the mid-1980s with a focus on reporting stories that had heart. He sought to give patients and caregivers a voice—unique at a time when medical stories were largely centered around medical professionals.
Then, Schorr became a patient himself. In 1996 he was diagnosed with chronic lymphocytic leukemia (CLL), a cancer in the blood-forming cells of the bone marrow. He was 45, decades younger than most people who are diagnosed with CLL. He had two young children and he and his wife had thought of having a third. Schorr wondered if he would live long enough to see them grow up.
His own experience with CLL, and later myelofibrosis, increased his determination to help patients’ voices be heard. He was no longer just a journalist; he became a patient advocate, dedicated to helping other patients get the information they need to take control of their disease.
Schorr is a co-founder and president of Patient Power LLC, a website with the latest cancer information and expert video interviews that supports and connects cancer patients, caregivers, medical centers, and other advocacy organizations. He is also a co-founder of the non-profit Patient Empowerment Network, which offers programs like patient forums, town meetings, and educational videos that enhance patient health literacy.
Now, at 68, he has produced thousands of webcasts and videos on a range of medical concerns and conditions. Schorr is the father of three children; the youngest was born after his diagnosis with CLL. And he recently became a grandfather.
Schorr spoke to HealthCentral by phone, offering insights into living with a chronic leukemia and striving to empower and educate other patients.
Chronic lymphocytic leukemia is a scary diagnosis in that is considered basically incurable. What has this journey been like for you over the last 20-plus years?
When I was diagnosed, I had never heard of CLL. I didn’t know what it was, but I knew it was bad. I thought I was dead. I didn’t really understand that CLL was a chronic cancer, not an acute cancer. I told myself, “I’ve got to get smart, just like I’ve told everyone else.” I knew I could find medical experts, but I also wanted to seek out other experienced patients who would be willing to share their wisdom.
This was the early days of the internet, and my next-door neighbor who was the techie guy came over, sat down at my computer, and found a leukemia group of patients on the internet. So, I introduced myself to the group, and within a day, I spoke to the leader of the group on the phone and she guided me to specialists in CLL. Ultimately, that’s how I got into a clinical trial that saved my life.
I believe the reason why I was already a journalist and then became a patient was that it allowed me to connect with others. Connecting with others led to a clinical trial that caused my remission, so that ultimately, I would have the energy to do more and with greater passion. This ended up being my “why” in life. As a journalist, I have a platform to speak credibly and do my journalism thing, but I’m really out for all of us, to help us all get what we need and deserve.
How has patient advocacy and treatment changed over the years, particularly for patients with leukemia?
It used to be in a one-size-fits-all approach to treatment. Now there are variety of treatments. But it’s not just what treatment should you have, but which treatment should you have, when? So, it’s a lot more complicated now. When I was diagnosed with CLL, the internet, when used properly, began to help us unlock the black box of health and started giving power back to the patient. The internet has helped the adult caregiver as well.
It used to be you would have tests done, but the data wasn’t shared with you. It was all gobbledygook and no one explained it to you. Now we’re in an age where you and your family need to be full partners in the discussion of what’s right for you and how you get it.
When you look back on all the projects you have been involved with, what area are you most proud of? What legacy do you hope to leave behind?
What I am most proud of are the people who say that we saved their life, that the information they found on our website gave them something they could take action on. We hear that pretty often. Second to that, is when we hear that we made their life better. More livable. That the information we put out there allowed them to go on with their life. Living with leukemia is scary. The more in control you are, the more you can calm down.
My hope is that my legacy will be that this model will continue to grow. That with more funding more support, can become worldwide. The model being education, empowerment, self-advocacy, community advocacy—and doing this in multiple languages and covering many more conditions. We have a long way to go.
To make this happen, we need to get the stakeholders of an illness together—the drug companies, the patients, the family members, the insurance companies; my dream is they all work together for the common good with patient benefitting. Right now, everyone is doing their own thing, piecemeal and infrequently. It should be like a washing machine, everything all thrown in together. If you do that, the companies with the innovative products will win. Everyone will win. It’s just a matter of working together and it has to be done with frequency.
In 2000, you chose to participate in a clinical study which put you into a 17-year remission. How is your health now?
In 2017 I had to undergo retreatment for CLL. I’m not in leukemia treatment now, but I do get an immunoglobulin that helps boost my immune system. The risk from CLL is to die from infection.
There’s also more to it for me. One of the possible side effects of the chemotherapy drugs I had before was that it can affect the DNA of cells, and this can increase the risk of getting a second cancer.
That happened to me. In 2011 I was diagnosed with myelofibrosis, which is scarring in the bone marrow. Fortunately, there’s a medicine for it that I take. So, I’m living with CLL, which is in remission, and myelofibrosis, which is managed.
What are the most important steps for a patient to take charge, self-advocate, and ensure they’re getting the best treatment possible?
The internet can be a great resource, but you need to find reliable sources and information. I wrote an entire book about this, called The Web-Savvy Patient. The idea is, how do you get to the credible and actionable information and how do you share this in a respectful way with your health care team?
And to add another layer, which test should you have when? And what does that test need? The test results are becoming increasing complicated by genomics. It’s important you make sure you have the right doctor for you.
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