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Highlights From The Imf Support Group Activities In Fiscal Year 2022

The IMF provides educational guidance to a network of support groups that empower patients and care partners with information, insight, and hope. Two of the biggest highlights of Fiscal Year 2022 were the annual IMF Support Group Leaders Summit, and the IMF bringing Support Group Leaders to the 63rd American Society of Hematology (ASH) annual meeting.

The 23rd Annual IMF Support Group Leaders Summit was the first hybrid program, giving participants the option of attending virtually or in person in Phoenix, Arizona. For four days in September, 114 support group leaders engaged in the hybrid program, representing 77 myeloma support groups. In all, 59 leaders attended in person and 55 attended virtually. Of whom, were 28 first-time attendees and 86 veteran leaders. The IMF’s effective safety protocols ensured that all in-person participants remained protected from COVID-19.

After IMF Vice President of Support Groups welcomed all in-person and virtual attendees, IMF President and CEO Yelak Biru shared his “Story of the Future” – a fitting perspective for the Summit and of how the IMF is pressing forward into a world where myeloma will no longer be a disease without a cure.

“Listening to myeloma experts from across the globe means connecting with people who are committed to finding a cure!”

IMF Chairman & Chief Scientific Officer Dr. Brian G.M. Durie gave a riveting update about the IMF’s research initiatives. On the last day of the Summit, Dr. Durie was joined by Dr. Yi Lin (Mayo Clinic, Rochester, MN) for a discussion of immunotherapies in myeloma. In separate sessions, IMF Chief Medical Officer Dr. Joseph Mikhael presented recent developments in available myeloma therapies, and Beth Faiman, PhD, MSN, APN-BC, AOCN® BMTCN®, FAAN, FAPO, talked about IMF Nurse Leadership Board (NLB)’s achievements. Aside from medical updates, Sue Dunnett, PhD, (University of Edinburgh) hosted a separate session on the theme of “The Myeloma Rollercoaster.” IMF Support Group Leader (Orangeburg, SC Support Group) Tiffany H. Williams led an important session on “Support Group Engagement Among African Americans.” Finally, three myeloma patients with very different experiences shared their journeys with myeloma and answered questions from their peers.

On a separate note, in December 2021, the IMF brought together Support Group Leaders (SGLs) and patients to represent the myeloma community at the 63rd ASH Annual meeting. An IMF tradition for many years, SGLs gleaned information from doctors from around the world and from the 879 myeloma-related abstracts that were presented. As one SGL shared, “Listening to myeloma experts from across the globe means connecting with people who are committed to finding a cure!”

LAS VOCES DE MIELOMA LAUNCHED IN FISCAL YEAR 2022

The IMF was thrilled to launch Las Voces de Mieloma, a Spanish language support arm in Fiscal Year 2022. Las Voces de Mieloma holds virtual monthly meetings every second Tuesday of the month.

It also hosts a website, http://lasvoces.support. myeloma.org/, where members of the myeloma community can register to learn about upcoming meetings and download Spanish-language resources such as translations of Dr. Durie’s blogs and of select IMF publications.

Las Voces De Mieloma Launched En El A O Fiscal 2022

El IMF estuvo encantado de lanzar Las Voces de Mieloma, un grupo de apoyo en español en el año fiscal 2022. Las Voces de Mieloma lleva a cabo reuniones mensuales virtuales cada segundo martes del mes. Estas reuniones brindan información vital sobre el mieloma múltiple y las opciones de tratamiento para pacientes, cuidadores y familiares.

Para saber más sobre Las Voces de Mieloma, visite http://lasvoces.support.myeloma.org/. En esta página web, los miembros de la comunidad del mieloma pueden registrarse para obtener información sobre las próximas reuniones y descargar recursos en español, como traducciones de los blogs del Dr. Durie y de publicaciones selectas de la IMF.

IMF’S GLOBAL MYELOMA ACTION NETWORK: ACTIVITIES IN EUROPE AND BEYOND

The IMF’s Global Myeloma Action Network (GMAN) brings together advocacy leaders in multiple myeloma to improve the lives of myeloma patients around the world. Representatives from GMAN assembled on December 15, 2021, for a webinar that coincided with the 63rd Annual American Society of Hematology (ASH) Meeting. The webinar included an update on key abstracts at ASH, an update on the 2022 Susie Novis Durie Educational Grants, and a review of 2021 GMAN patient education webinars. The webinar concluded with three inspiring presentations from the 2021 Susie Novis Durie Educational Grant recipients. The 2022 Annual GMAN Summit began on May 20 in Milan, Italy. More than 30 representatives of international organizations that serve the global myeloma community celebrated meeting in person for the first time since 2019.

On May 21, the Summit participants’ peers joined via a video call. All 30 GMAN member countries were represented. Yelak Biru, IMF President & CEO, opened the Summit. He shared his goal of leading the IMF in its mission to improve lives and find a cure for myeloma by using the model of Capacity Building, Awareness, and Improving Access. IMF Director of Global Myeloma Action Network and European & Middle Eastern Patient Programs Serdar Erdoğan outlined the modern definition of resilience, while Yelak explained the six domains that will help advance the mission to cure myeloma and give patients and their care partners a framework for optimal balance.

Dr. Brian G.M. Durie, IMF Chairman & Chief Scientific Officer, spoke about the new era of myeloma therapy. Next, GMAN member organizations that received the 2021

Susie Novis Durie Grants shared the outcomes of their projects. The recipients of the 2022 Susie Novis Durie Grants were announced: Myeloma Australia, Finland’s Suomen Syöpapotilaat, Norway’s Blodkreftforeningen, and Romania’s Myeloma Euronet. Breakout sessions focused on starting and sustaining myeloma groups in new regions. Dr. Mario Boccadoro and IMF Chief Medical Officer Dr. Joseph Mikhael led a panel discussion on CAR T-cell therapy in myeloma, and how to develop a strategy to overcome access and supply chain issues. The sessions closed with a review of new treatments for relapsed disease.

Healthcare inequality was an important topic of conversation throughout the Summit. Issues on access to care, medications, and therapies are compounded by issues with access to information and support. GMAN delegates shared myeloma therapies being approved in their countries. Yet, patients are being denied these therapies due to lack of alignment with payers. GMAN is calling for equal access to approved prescribed medications for all patients. GMAN members explored the role of pharmaceutical companies in providing information and support, and how this differs from country to country. To strengthen GMAN’s collaboration with the World Health Organization (WHO), an idea was developed to mandate the use of drugs post-launch, and to help deepen relationships with the industry in driving information and cost discussions.

After three years of only being able to connect virtually, in-person Patient & Family Seminars resumed in Oslo, Stavanger; Trondheim, Norway; Madrid, Spain; and Nyborg, Denmark in September 2022. All the attendees and experts were excited and happy to finally meet as a community.

Imf Advocacy Team Actions In Fiscal Year 2022

At the start of Fiscal Year 2022, the IMF Advocacy team had discussions with legislators about core issues for the myeloma community. One such issue is patients having access to affordable, uninterrupted orally administered cancer therapies. This issue has become even more pressing during the COVID-19 pandemic. Oral parity legislation ensures oral chemotherapy drugs, like many of the drugs taken by myeloma patients, are covered by insurers in the same way intravenous (IV) therapies are.

At The State Level

Over the years, the IMF Advocacy Team’s led efforts that contributed to the passage of Oral Parity Laws in 43 states and in Washington, DC.

At The Federal Level

That said, federal legislation is still needed to help more than 130 million people with federally regulated insurance plans. The IMF has been actively working to address this issue for those who do not benefit from state bills. This legislation, known as the Cancer Drug Parity Act, has bipartisan support and would help many of the individuals not reached by state-level laws. The IMF-led Coalition to Improve Access to Cancer Care (CIACC) has accomplished record progress with its work to advance oral parity legislation.

The IMF Advocacy Team led CIACC members in conducting meetings about this issue with Members of the House and Senate, including Leader McConnell’s and Leader Pelosi’s Offices. Also, IMF Advocacy sent letters to top policymakers about how the Cancer Drug Parity Act could help patients. The bill received traction in COVID-19 legislative discussions, but was not included in the relief packages. Despite this, there was increased support. At the end of the last Congress, the bill gained support from 170 House co-sponsors and 19 Senate co-sponsors. We have already surpassed this success in the Senate.

Actions Taken By Veterans Against Myeloma

The team advocated for the passage of the Sergeant First Class Heath Robinson Honoring Our Promise to Address Comprehensive Toxics (PACT) Act of 2022, which is a comprehensive package aimed at addressing toxic exposure related diseases, like myeloma. This package should help streamline access to veterans’ benefits and expand access for individuals with both myeloma and MGUS.