Over the past decade, there has been a dramatic change in the melanoma treatment landscape with more treatment options and better outcomes for patients than ever before. However, this is not the case for far too many people around the world.
In 2014, the Melanoma Research Foundation, in response to the global need for bringing the patient voice to the melanoma space, brought together organizations from around the world to create the Global Coalition for Melanoma Patient Advocacy. Since its founding, the group has grown to include organizations from 25 different countries and is enthusiastically supported by not only its partners around the world, but also the global patient, healthcare and pharmaceutical communities. The Coalition meets the vital needs of the worldwide melanoma community through the functioning of three working groups, each specializing in a unique area (Melanoma Awareness, Access to Treatment and Clinical Trial Design and Access) that has been identified by the group as a whole as addressing globally relevant issues for melanoma patients. The work being done by each group is as follows:
Melanoma Awareness Working Group
New research has found that nearly 90% of melanomas are preventable, so raising awareness is of utmost importance to slowing the rapidly rising worldwide rates of diagnoses. Despite the best efforts of many groups to raise awareness, much is still unknown about what messaging effects change in public behavior, which is where the Melanoma Awareness Working Group sees the opportunity to make a positive impact. Currently, the Awareness Working Group is striving to:
- Develop new approaches to both primary prevention (sun safety messaging to prevent melanoma from occurring) and secondary prevention (detecting melanoma early after it has occurred)
- Educate the public on how to do self-screenings and training primary care physicians on how to evaluate suspicious lesions.
- Promote reputable cancer registries for improved patient outcomes.
- Increase public awareness with a focus on photoprotection.
- Create core messaging regarding prevention for Coalition members to adapt for their countries and distribute to their constituencies.
Access to Treatment Working Group
In many countries, the only treatment available to melanoma patients is traditional chemotherapy, and in some countries, no options exist at all. Additionally, in some places where newer, more effective treatments are available, they are at times offered at such a cost as to be inaccessible by large portions of the population. This disparity results in drastically different outcomes for patients based on where they are located and if they have the resources to cover the cost of the drugs or to travel to a location where they are available. The Access to Treatment Working Group is working to increase the accessibility of treatments through efforts to:
- Compile information about barriers to treatment access for people around the world.
- Devise strategies to advocate for change.
- Train advocates around the world, enabling them to appeal to their government agencies officials and to urge them to cover the costs of newer drugs.
- Train patients to seek out opportunities to share their stories with the public.
- Establish public awareness campaigns in underserved communities.
- Collect data and create the training resources necessary to help patients make medically, financially and emotionally compelling cases and decisions.
Clinical Trial Design and Access Working Group
Access to clinical trials varies widely throughout the global melanoma community. In countries where effective treatments are widely available, clinical trials may struggle to enroll patients, and some countries have few if any clinical trials at all. Many times, clinical trials are the best treatment option for patients, however all too often, patients do not have the tools necessary to evaluate what trial would be most effective for them. There is an opportunity for the Clinical Trial Working Group to make a large and positive impact on patients by working to:
- Introduce clinical trials into underserviced communities.
- Train patients to empower them to better evaluate clinical trials to find the ones that are best for them.
- Create a list of clinical trials available in each country.
- Provide resources to healthcare providers to allow them to give better support to patients who are searching for clinical trials.
The Global Coalition for Melanoma Patient Advocacy meets in person annually, with its last meeting occurring during the Society for Melanoma Research annual meeting. However, these working groups communicate year-round to make sure they are on target with their goals and advancing the state of melanoma care and advocacy around the world. The Global Coalition for Melanoma Patient Advocacy is strongly positioned to move forward in the months and years ahead, and is determined to make the deadliest skin cancer curable through its worldwide partnership.
For more information or with questions about the Global Coalition, email [email protected]