ADVOCACY
ADVOCACY DAYS 2023 For the first time since 2020, 31 melanoma advocates from 14 states gathered in Washington, DC to share their stories with lawmakers and advocate for melanoma research, increased access to telehealth, diversity in clinical trials and melanoma prevention. This annual event brings together patients, caregivers, survivors, thrivers and healthcare professionals across all melanoma subtypes to advance care for melanoma patients. OM patients joined in Advocacy Days to share their unique experiences with lawmakers who were alarmed at the current lack of resources for OM patients. Through the convening of the first-ever Rare Disease Listening Session at the Food and Drug Administration (FDA) as well as through feedback from OM patients, CURE OM has identified three key priorities of advocacy: telehealth policy for increased access for patients, increased funding in the Congressionally Directed Medical Research Programs (CDMRP) and increased clinical trial diversity. We believe by working towards these goals we will improve the lives and people living with OM and their families and get us closer to finding effective treatments, and ultimately a cure. To strengthen this work and expand as needed, CURE OM continues to work with partners to establish a collaborative patient and provider advocacy agenda. The MRF strives to represent all melanoma patients and to create an advocacy agenda reflective of the needs of all melanoma patients, including the unique needs of ocular melanoma (OM) patients, while harnessing and integrating the unique collective power of the patient community to advance our goals.
“Participating in advocacy days as an ocular melanoma patient has been an incredibly meaningful experience for me and my entire family. It's about being a part of something bigger, a community that is actively working to make a difference. Through advocacy, we're not only raising awareness but also paving the way for better support, research, and hope for those battling this disease. Together, we are making a lasting impact that will benefit generations to come.” -Ocular Melanoma Patient Advocate
40% of OM patients traveled over 50 miles to receive an official OM diagnosis.
WHY ADVOCATE FOR TELEHEATH FOR OM PATEINTS? Using data from CURE OM’s VISION Registry we have been able to identify that patients are traveling far distances to receive care for their OM. Together with patients, we have identified the expansion of pandemic-era telehealth flexibilities as a key priority for OM patients.
Almost 40% of rare disease patients reported traveling more than 60 miles for medical care.*
60% of OM patients traveled over 50 miles to receive treatment.
50% of OM patients traveled over 500 miles to receive treatment for metastatic disease.
*Reported in a 2020 survey conducted by the National Organization for rare Diseases (NORD)
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