By Haleemah Atobiloye, M.A., she/hers, Program Manager
Incentives are a concept I find to be both valuable and complex. In the political economy space in which I have academic familiarity, an incentive is a motivating factor that drives a person or institution to choose a particular course of action. I attended my San Antonio Breast Cancer Symposium (SABCS) sessions with the mixed analytical lenses, both as a patient advocate representing a health justice nonprofit organization, and a social scientist attempting to decode what incentives drive the organizers, sponsors, researchers, medical professionals, attendees, and patient advocates at this symposium.
The first presentation I attended at SABCS was “How to measure and improve drug adherence in clinical trials” presented by Dawn Hershman, MD, MS, FASCO. This Clinical Research Workshop presentation drew a lot from the results of a research study that used a dataset of 9000+ patients on hormonal therapies from Kaiser Permanente to examine medication non-adherence and cancer – especially in the use of tamoxifen and the discontinuation of chemotherapy. Dr. Hershman and her research group found that 25% of patients discontinued their medication over a five-year course. About 25% took their medicines irregularly [irregularly here meaning less than 80% of the time]. Further findings from the data reveal that early discontinuation of medications or irregular use of medications increases mortality.
In addition to sharing these findings, Dr. Hershman informs us that medication nonadherence, especially for chronic [breast cancer] conditions, results in huge costs to the American healthcare system. According to her, it is estimated over $300 billion is spent each year on issues related to emergency room visits, hospitalizations, and premature death, thus leading the doctor to describe medication nonadherence as “a bad thing.”
While I see the logic in Dr. Hershman’s argument that for some patients, adhering to the prescribed medication regimen might potentially do more good than harm, I also know that there are consequential gaps in the current healthcare system that aren’t being explored that explain the high level of medication nonadherence. The following are specific presentation points that I agree with, and others that I think need to be addressed, as they don’t take into consideration the complexity of living with and/or dying from breast cancer:
Hershman: We spend a lot of time at meetings like the SABCS talking about exciting new drugs.
I completely agree with Hershman here. At SABCS, instead of focusing on how existing breast cancer drugs can be improved and/or made more affordable, way too many hours were spent talking about new drugs and the kind of results they hope to get from clinical trials two years from now.
Hershman: If people living with breast cancer either don’t have access to medications or do not use them if they do have access, then the drug doesn’t have the intended effect on the patient.
Also, a great point. However, I imagine that people living with and dying from breast cancer want to get better, and if a drug or treatment is actually helping them get better, why would they stop?
Understanding the incentives behind both adherence and nonadherence is a good starting point for the healthcare system to begin from, before trying to find ways to “improve and measure” medication adherence. Some qualitative tips I suggest to identify incentives include:
Over the years, long-time BCAction Information & Resource Liaison Zoë Christopher has received phone calls and other correspondence from breast cancer patients who don’t adhere to medications. Some of the popular incentives that pushed these folx to this decision include:
Issues related to quality of life over quantity of life, time, money, and energy are, in my opinion, are all valid incentives for not adhering to medication.
Hershman: We want to improve public health. We need folx to take their medicines because we want to improve their outcomes.
I am 90% sure that the we Dr. Hershman was referring to here is the host of nurses, radiologists, pathologists, oncologists, pharmacists, and other members of the breast cancer industry that patients have to encounter at every step in their cancer journey. Breast cancer can be a very long and painful disease. Screening, to diagnosis, and the eventual treatment sessions typically last between three to twelve months, and much longer for a lot of people. This journey is mentally, physically, emotionally, and financially exhausting for any person to go through.
Breast cancer disproportionately affects people assigned female sex at birth; hence I am going to use this group to make my next point. Multiple research studies have found that people assigned female sex at birth, especially people assigned female sex of color, generally experience healthcare differently from folx assigned male sex at birth. People assigned female sex metabolize drugs differently than people assigned male sex at birth. Yet the pain and conditions of people assigned female sex at birth are often dismissed and ignored by healthcare professionals. So, if a person assigned female sex at birth undergoing clinical trials decides to discontinue breast cancer drug treatments for whatever reason, in addition to seeking ways to measure and improve adherence in clinical trials, maybe cancer professionals and the healthcare system, in general, should be looking for cost-effective, humane (less toxic), and generally sustainable methods to treat this disease.
With the high rates of medication nonadherence, it is clear we need better incentives. Beyond the popular incentives which include the removal of financial barriers to make breast cancer treatments accessible and investing in research to limit the side effects of treatments, asking the right questions and actively listening to patient advocates and people living with or dying from breast cancer will shed more light on incentives that can be put in place to increase medication adherence.
I feel obligated to include this closing reminder because I have come to realize that some cancer professionals forget: We – and we here are the thousands of people living with breast cancer, people dying from the disease, millions of people at risk of the disease, and people advocating and working to address and end the disease – also want to improve public health and improve breast cancer treatment outcomes. Just provide us with the right incentives to make this happen!