2021 Annual Report

WE AIM TO END M

? w hile im proving t h

MELANOMA

he lives of t hose it affect s.

WHATWEDO

We direct, manage and fund COLLABORATIVE RESEARCH INITIATIVES, on a national and global scale. Our initiatives are innovative. We ask the world?s leading melanoma researchers what they need? what?s missing in the fight? and listen when they respond.

We speak on behalf of melanoma patients and families through our work in LEGISLATION, POLICY, AND ADVOCACY. The invited presence of our staff on numerous boards and committees that directly affect patients is one indication of our leadership in the world of melanoma.

The breadth, depth, and number of our EDUCATION AND SUPPORT resources for the melanoma community are second to none. Whether you?re a patient, survivor, caregiver, family member, nurse, physician, or researcher, we have so much to offer.

L E T T E R F R O M T H E P R E S I D E N T

2021 started with COVID still raging? still taking many lives across the country? and before any vaccines were available. It ended in a much better place, with so much in our lives getting back to normal. All the while, AIM focused on battling melanoma, the rate of which did not decline during COVID. This annual report describes three successes of the year for AIM at Melanoma? one from each of the areas of our mission. You are the reason for our successes, and we are grateful for your support.

Samantha Guild, President AIM at Melanoma Foundation

om ing out of COVID

"Theprimarytumor isthe holygrail of resourcesfor melanoma researchers. We knowthe information weseekabout melanoma isavailablein primary tumors, but researchersneed a critical massof fresh frozen tissueand all the relevant patient data to understand it.Webelieve fresh frozen primarytissue can help usdiscover theanswersweseek, such aswhosemelanomaswill spread and become deadly;who will respond to immunotherapies; and? ultimately? how wecan curethisdisease."

John M. Kirkwood, MD, Usher Professor of Medicine, Dermatology and Translational Science and co-Leader, Melanoma and Skin Cancer Program, UPMCHillman Cancer Center

COLLABORATIVERESEARCHINITIATIVES

THEINTERNATIONALMELANOMATISSUEBANKCONSORTIUM(IMTBC)

SUCCESS

Resum pt ion of t issue collect ion aft er COVID:

At t he end of 2021, w e?d collect ed 64 t issues

COVID stopped tissue collection? at some sites for nearly two years? but by the end of 2021 three out of four of the IMTBCsites were finally able to resume normal collection (and the fourth resumed in 2022).

At t he end of 2021, w e had banked a t ot al of 64 prim ary m elanom as, all fresh frozen, w it h depersonalized pat ient dat a and blood sam ples.

p SUCCESS

Advocacy t o change an insurer ?s st ep t herapy requirem

ent t o a m ore

Advocacy campaigns are often silent yet critically important pushes to make changes that benefit patients. therapy before any others, and to ?fail?that treatment prior to getting coverage to use another. The term ?s It is a problematic situation, because many factors go into the physician and patient decision for which trea status; potential treatment toxicities; tumor characteristics; and patient treatment preference. AIM firmly be available science and patient preference.

AIM at Melanoma was actively involved in an effort to change the carrier?s policy. AIM contacted and helped did not follow the science or various national, respected guidelines, such as the NCCN (National Comprehen patients, and AIM all worked together to respectfully but firmly point out the error to the carrier and advoca It w as indeed a successful cam paign: The advocacy t o change t he policy t ook place in 2021 and (snea order- and t ype-of-t reat m ent decisions t o doct ors and pat ient s.

LEGISLATION, POLICY& ADVOCACY

at ient -cent ric policy

In this case, an insurance carrier in a certain state was requiring melanoma patients to use a particular step therapy?refers to a patient moving through therapies by failing one in order to get to the next. atment to try (and which treatment to try first), including but not limited to the latest data; tumor mutation elieves that decisions about treatment should be between the doctor and patient, based on the best d to organize multiple stakeholders to convince the insurance carrier that, based on data, their step therapy nsive Cancer Network) and ASCO (American Society of Clinical Oncology). Providers, research institutions, ate for a change in their policy. AIM was the only melanoma patient advocacy organization involved. ak peek int o 2022) t he insurance carrier changed t heir policy t o t he m ore st andard one of leaving

SUCCESS

diagnosis

An expansion of our resources t o address t he psychosocial aspect s of a m elanom a

EDUCATIONANDSUPPORT

At the end of 2020? probably as a result of the unprecedented COVID situation and the social and emotional toll it took on so many? AIM heard loudly and clearly from our community that more psychosocial resources specific to melanoma were needed.

Our staff gathered to think through what resources we could provide and the best way to provide them. After much discussion, a new program was born: Beyond theClinic:LivingWell with Melanoma.Hosted by Raymond Liu, MD, the Director of Cancer Survivorship, Kaiser Permanente San Francisco, these podcasts feature topics seldom discussed in the exam room but essential to patients and their families during and beyond treatment.

There w ere 11 w ebinars in 2021:

- Self-Image and Cancer

- Managing or Pursuing a Career with a Cancer Diagnosis

- Coping with Scanxiety

- How to Help Children and Teens When a Family Member Has Cancer

- Dating, Intimacy, Sexuality and Melanoma

- Coping with Covid During Melanoma

- Melanoma, Covid and the Holiday Season

- Managing the Fears and Anxiety Around Making Treatment Decisions

- Caring for the Caregiver

- Managing the Fear of Cancer Recurrence

- Coping with Grief During the Holidays

Beyond the Clinic has been m et w it h ent husiasm by t he m elanom a com m unit y, and w e are t hrilled.

THANKYOU

AIM at Melanoma?s goal is to end this disease in our lifetime while improving the lives of those it affects, and we are able to pursue this goal because of our supporters?generosity. We are committed to sound financial practices, transparency, and accountability, all of which are critical to attracting and keeping the generous funding that allows us to fulfill our mission.

Thank you for your support and your trust.

HOWAIMATMELANOMAUSESFUNDS

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