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As Cancer Care Evolves, Patient Empowerment Must be a Priority

BY Susan Stewart
PUBLISHED April 13, 2020
In recent years, calling out America’s confusing health care system as broken seems to be in vogue. What I find most disturbing about our system is a lack of consistent and easily-understandable information about diagnosis and treatment options – which often leaves patients and their families with more questions than answers.
 
This is especially evident in cancer care, where patients – inundated by treatment options spanning from the cutting-edge, new therapies to holistic treatments – feel intimidated, overwhelmed and frustrated.
 
There must be a sea change in current methods of care to better support patient education and empower them to ask health care providers about all available treatment options and access to innovation, and costs, helping to decide what’s right for each individual patient. 
 
As a cancer patient myself, I experienced this sense of helplessness firsthand when, in 1988, I was diagnosed with acute myeloid leukemia (AML). Right away, I struggled to comprehend the complex, technical treatment landscape and “medspeak”. An infamous term designated for medical jargon that routinely befuddles anyone without a medical degree.
 
My confusion was compounded when it was recommended that I undergo a bone marrow transplant. At that time, I didn’t know anyone who had a bone marrow transplant and even after numerous discussions with bone marrow transplant experts, I still ended up empty-handed when searching for easy-to-understand information. It was this isolating experience that inspired me to found BMT InfoNet, a patient advocacy organization that provides educational resources to bone marrow, stem cell and cord blood transplant patients.
 
Fast forward to today, where there is so many options for cancer treatment that it can be hard to know where to start. Patients can easily research online and via forums, yet each person’s diagnosis and circumstances are different, and health care providers must be involved in any conversation about treatment. 
 
It’s there – in the room with the oncologist, nurse or doctor – that patients must take charge and request more information about treatment to ensure they have access to all options, including recent therapeutic advances.
 
One such example is chimeric antigen receptor (CAR) T-cell therapy, a type of treatment in which a patient’s blood cells are extracted, engineered to attack cancer cells and infused back into the patient to fight the cancer. CAR T is an exciting new tool in the arsenal of therapies available to combat blood cancers that has extended the life of many patients– but not all patients have ever heard of CAR T or understand how it works.
 
As a complex and relatively new treatment, CAR T is offered by just 130 hospitals across the U.S., already limiting patient access to certain geographic locations. It’s exactly the type of situation in which patients must be assertive in discussing all treatment options – even participating in a clinical trial – and understand the pros and cons of each. And, there should be steps taken to translate complicated “medspeak” into an explanation that the average person can understand.
 
I have often seen how patients feel helpless when they are forced to rely on the sole advice of their primary care provider which, in some cases, could limit their options to a narrow selection of traditional treatments. Patient access is further restricted when considering the additional hurdles associated with our country’s confusing insurance landscape and inadequate reimbursement policies.
 
Several years ago, I spoke with a mother who was struggling to find alternative treatment options for her child with leukemia. She was unable to find a matched bone marrow donor and did not know about the possibility of an umbilical cord blood transplant because, as she later learned, the hospital did not offer the treatment.
 
Thankfully, her child successfully received the transplant at a nearby hospital, but I wonder how many other families may be in the same position, trying to understand all options and what’s best for their loved ones.
 
The gaps in patient awareness and education are significant – and the oncology community must better support patients to educate about different treatments and enable informed decisions. New, innovative treatments that patients may not know about or understand should be presented so that patients can decide, with their health care providers, what is right for them.
 
Patient education and in-depth discussion about treatment options and sensible reimbursement policies will go a long way toward ensuring broad patient access to innovative cancer care.
 
Susan Stewart is Executive Director of BMT InfoNet, a patient advocacy organization dedicated to providing educational resources to bone marrow, stem cell and cord blood transplant patients.
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