The Path For Skin Cancer Advocacy
In October of 2018, two members of the SkinCancer.Net team (Marcia and Nina) attended the Melanoma Action Coalition’s Fall Conference at The University of Pennsylvania in Philadelphia. The Melanoma Action Coalition, or MAC, is a national organization made up of patient advocates, clinicians, and other national advocacy groups. The theme of the conference was “Confronting Melanoma In All Its Forms And Stages.” A focus of the conference was the newer targeted and immunotherapies to treat skin cancer.
Who are the Melanoma Action Coalition?
Both Nina and Marica described MAC as a small but extremely active community. By attending, they hoped to listen to the skin cancer advocates’ voices in the room, and bring back key details to share with the SkinCancer.Net community. It was also an opportunity to hear from other patients in-person, as well as healthcare professionals in the field.
One of the most powerful parts of the conference, they said, was hearing from survivors and their caregivers. There were also people who had lost loved ones to skin cancer. One attendee generously shared the story of her son who died from an undetected metastasized melanoma at age 25. She asked the clinicians in the room: Why don’t those diagnosed with skin cancer get body scans? With other cancer diagnoses, patients often get scans to see if the cancer had spread. Their answer was chilling: it is not commonly covered by insurance, and therefore not done.
A heated conversation
One of the more intense parts of the conference was a conversation between a nurse and a dermatologist. The nurse told a story of a patient sent to her for a squamous cell on the patient’s inner thigh. While prepping the patient for the procedure, the nurse noticed a spot on the patient’s foot which turned out to be melanoma. The nurse asked the dermatologist: How was this spot missed, and the squamous cell spotted? Isn’t there a standardized protocol for skin exams? Well, it turns out, there isn’t.
The dermatologist explained that it’s up the clinician to decide which parts of the body they will check. Based on the clinician’s comfort level, they may or may not decide to ask you to completely disrobe, meaning that they may miss spots on your genitals, buttocks, or other frequently missed areas. Depending on who you see in a dermatologist office, you may have different parts of your body checked by different doctors!
The future of patient advocacy
This puts the onus on the patient to advocate for themselves and ask the dermatologist to check thoroughly. With skin cancer being one of the most overlooked cancers by both doctors and patients, this is not acceptable! This leaves too much room for error, and proves that there is more advocacy work needed to standardize the approach to skin checks, and to save lives. Nina described this part of the conference as a plea from the patients in the room for skin cancer to be taken as seriously as other cancers.
On a positive note, the MAC Conference showed the team:
- There are paths for advocacy. You might have to pave them yourself, or they might be hard to find, but this coalition helps people start.
- Sharing stories and articles with your friends, family, and on social media can help people understand just how serious skin cancer is.
- Your story is your most powerful rallying cry.
- There is still work to be done regarding insurance coverage and advocating for standardized skin checks, but knowledge is power!