“People always say that ‘cancer doesn’t discriminate,’ but the healthcare system often does,” -Liz Margolies, LCSW, Executive Director, National LGBT Cancer Network.
Unfortunately, the reality of this statement is that there are inequities in cancer treatment for some minority populations. Racial minorities, the LGBTQ+ population, those of low socioeconomic status, individuals in certain geographic locations, and those with certain insurance statuses, can be presented barriers which impede their cancer treatment.
Recognizing that disparities in treatment will not improve without action, The National Comprehensive Cancer Network (NCCN) recently hosted a Patient Advocacy Summit to discuss ways to achieve better outcomes for these populations.
The NCCN is composed of 28 different cancer organizations, and the summit included panel discussions, case studies, and numerous presentations on ways to eliminate the barriers which stop certain individuals from receiving the care they need. Some of the organizations present included the Tuba City Regional Health Care Corporation, Tennessee Oncology, Center for Business Models in Healthcare, PanCAN, LLS, National LGBT Cancer Network, Lazarex Cancer Foundation, Colorectal Cancer Alliance, and KCA. There were also patients and advocates there to share their own perspective and experiences with the issue. Ultimately, before we can fix the problems in care, we must ensure we fully understand them and what’s causing them.
“Cancer care practices are improving every day, but we have to work together to make sure those advancements are accessible to everyone,” – Robert W. Carlson, MD, Chief Executive Officer, NCCN
Some of the issues discussed
In the Navajo land, 85% of homes still face contamination from uranium (a carcinogen) due to abandoned mines in the area. This uranium enters the bones of residents, giving Navajos 95% more uranium in their body than the average person. Since the area is so remote, the residents who develop cancer have to travel over 100 miles just for treatment. This is a huge burden, and while it can be solved by treatment over the phone or online in some cases, not all people have access to that type of technology. While it can be implemented, the financial burden is significant.
Another issue is the stigma and discrimination faced by LGBTQ+ populations. These stigmas actually increase this population’s cancer risk. There is a lack of education and bias surrounding these individual’s unique needs, and it has caused these patients to have worse treatment outcomes.
There is also an issue regarding the current lack of diversity within clinical trials. This issue is partly due to cultural mistrust which stems from historic events such as the Tuskegee syphilis experiment. There are also language barriers which may affect patient’s decisions as well as both conscious and unconscious bias. Clinical trials are sometimes the only option for patients desiring treatment and everyone should have access to the breakthroughs they can provide.
It’s also important to understand that even within the same population of patients, each individual is going to have their own specific cancer profile. This means they will each have a unique set of needs – both physical and emotional. Patients at the summit indicated burdens such as childcare costs and missed paychecks.
A hopeful future
Many of the organizations at the summit have already implemented various programs to address these disparities. For instance, the Leukemia & Lymphoma Society has established a Myeloma Link program which specifically focuses on addressing the disparities faced by African Americans with the condition. Multiple myeloma is two times as prevalent in African Americans than white individuals.
Truly, it’s about reducing the variability of cancer care and leveling the playing field so all patients can receive the treatment they need at a reasonable cost. We need to focus more on eliminating barriers, empowering minorities, and providing access to quality healthcare for all patients.
If you’d like to join the conversation on this issue, use the hashtag #NCCNPatients.