The International Myeloma Foundation's Advocacy Priorities
At the IMF, we are dedicated to shaping the laws and policies that address the unique needs of myeloma patients and drive significant advancements in care and treatment.
Our advocacy priorities are determined by gathering input from our community, including myeloma patients, care partners, hematologists/oncologists, and policy experts. We conduct targeted surveys, organize focus groups, and engage with support groups across the country to understand the unique challenges faced by patients, care partners, and the wider myeloma community. We also analyze trends in myeloma research, legislative opportunities specific to cancer care, and gaps in existing policies to identify areas where our advocacy efforts can have the most significant impact.
These three areas encompass the most pressing issues in patient care. They are the foundation for the IMF’s priorities in advocacy:
1. Ensure Access to Care
We advocate for laws and policies that ensure all myeloma patients have equitable, comprehensive, patient-centered care without insurance barriers that limit options or delay treatment initiation.
2. Eliminate Financial Barriers
We advocate for law and policies that reduce the financial hardships associated with treatments and supportive care interventions.
3. Advance Myeloma Research
We advocate for law and policies that foster innovation in myeloma research and drug development, including increased funding for basic and translational research, streamlined regulatory pathways for novel therapies, and improvements in clinical trial diversity.
Ensure Access to Care
1. Step Therapy/Fail First Therapy
We support policies to improve existing step therapy/fail first protocols that require a preferred drug to fail a patient before they can access the originally prescribed drug. We believe in ensuring access to the treatments chosen by a patient through a shared decision process with their physician.
2. Prior Authorizations
We support policies to limit the use of prior authorization because it disrupts and delays patient care and creates substantial administrative burdens for providers. We support quick communication of decisions, and a clear appeals process for denials.
3. Waiting Period Removal
We support removing the five-month waiting period to receive Social Security Disability Insurance (SSDI) and the 24-month waiting period to receive Medicare benefits for newly diagnosed patients.
4. Telehealth & Telemedicine
We support permanently extending telehealth and telemedicine services to ensure patients continue to have access to health care services beyond those put in place during the COVID-19 pandemic. We support policies and programs particularly in rural and underserved areas, enabling remote consultations, monitoring, and access to specialized care.
Eliminate Financial Barriers
1. Oral Parity
We support state and federal efforts, to provide coverage for oral chemotherapy drugs with the same out of pocket cost sharing as chemotherapy drugs administered intravenously by a physician.
2. Copay Accumulators
We support a ban on copay accumulator programs that prohibit copay assistance from being applied toward an annual deductible and/or maximum out-of-pocket cost sharing.
3. Out-of-Pocket Caps for Insurance
We support out-of-pocket caps and an annual cost-sharing maximum for private insurance providers. We also support an out-of-pocket maximum for Medicare Part B, similar to Part D.
4. PBM Reform
We support increasing PBM transparency and reporting obligations including negotiations with pharmaceutical companies, drug price and rebate information, and formulary and benefit design.
Advance Myeloma Research
1. Clinical Trial Access & Equity
We support the coverage of indirect costs to patients to facilitate participation (e.g., transportation, childcare, clinical navigation) and a focus on clinical trial eligibility criteria that ensure representation from diverse populations.
2. Federal Research Funding
We support increasing federal appropriations for cancer research through agencies like the National Institutes of Health (NIH) and the National Cancer Institute (NCI), supporting initiatives focused on myeloma research, drug development, and precision medicine approaches to improve treatment outcomes and quality of life for patients.
3. Congressionally Directed Medical Research Programs (CDMRP)
According to the CDMRP’s website, the Congressionally Directed Medical Research Programs (CDMRP) was established in 1992 by means of a Congressional appropriation “to foster novel approaches to biomedical research in response to the expressed needs of its stakeholders—the American public, the military, and Congress.”
The CDMRP “strives to transform healthcare for Service members and the American public through innovative and impactful research.”
The CDMRP:
- Invests in groundbreaking research
- Targets critical gaps
- Reviews applications using a two-tier formal review with no standing peer review panels and no “pay line”
- Involves consumer advocates throughout the program cycle
- Supports both the next generation of researchers and established scientists
- Funds the fill pipeline of research development, including basic, translational and clinical research
- Fosters or employs collaboration and synergy
By funding high-impact, high-risk, and high-gain projects that other agencies may not venture into, the CDMRP is able to fill gaps in research. All programs managed by CDMRP have these goals in mind:
- To advance paradigm-shifting research
- To come up with solutions that will lead to cures or improvements on patient care
- To provide breakthrough technologies and resources for clinical benefit
What is the Peer Reviewed Cancer Research Program (PRCRP)?
Due to the nature of their service and deployments, members of the military “are exposed to hazardous environments and thus, are at risk for the development of many types of cancers.”
The Peer Reviewed Cancer Research Program’s (PRCRP) mission is “to successfully promote high-impact research for cancer prevention, detection, treatment, and survivorship.”
The PRCRP has been charged by U.S. Congress since FY 2009 “to fund innovative basic, applied, and translational cancer research to support Service members, their families, and the American public.”
Its vision is “to advance mission readiness of U.S. military members affected by cancer and to improve quality of life by decreasing the burden of cancer on Service members, their families, Veterans, and the American public.” To accomplish its mission, the PRCRP seeks to fund different areas of the research landscape by:
- Offering funding opportunities directed toward the special focus of Service members and potential cancer risks
- Focusing on the gaps in cancer research with respect to unique situations and military environments
- Addressing growing and developing the future of research through targeted funding opportunities for early career investigations
By funding highly relevant and innovative cancer research for military health and welfare, the PRCRP strives "to improve the quality of life by decreasing the impact of cancer on Service members, their families, and the American public.”
What is the International Myeloma Foundation’s (IMF) role in ensuring that multiple myeloma is included in the Peer Reviewed Cancer Research Program (PRCRP)?
With Advocacy as one of its core principles, the IMF is committed and heavily involved in ensuring that myeloma research is funded, and that multiple myeloma (in addition to all blood cancers) remain on the list of diseases that the CDMRP (under the Department of Defense) will continue to do research on.
The IMF’s involvement in this program is very complex. For multiple myeloma to be included as an eligible disease for CDMRP funding, at least one member of both the House and Senate must request the inclusion of blood cancers as a topic area in PRCRP. This entails yearly advocacy efforts from the IMF and once successful, myeloma researchers must be informed about the grants and how to apply for them.
Why is the Peer Reviewed Cancer Research Program (PRCRP) important to the IMF and to myeloma patients and care partners?
The IMF is fully aware that members of the military may be exposed to a range of chemical, physical, and environmental hazards during the course of their service. Unfortunately, exposure to hazardous materials (such as chemical weapons, ionizing radiation, herbicides, electromagnetic fields, jet fuel, or organic materials) has been connected to the increased incidence of Leukemia, non-Hodgkin’s Lymphoma (NHL) Hodgkin’s Lymphoma (HL) and multiple myeloma (MM). Sustained research is needed to find new treatments and cures to support service members, their families, and the American public.
The PRCRP is unique and differs from other government grants because patients and care partners are directly involved in the decision-making process when it comes to choosing which grant application should receive funding. These patients, known as “consumer reviewers,” are recruited and nominated by the IMF.
To become a consumer reviewer, how does a patient volunteer go through the application process?
The application process includes filling out an application, receiving a nomination letter from the IMF, and doing an interview with the CDMRP staff. Throughout the process, chosen consumer reviewers are given a voice and speak on behalf of myeloma patients to ensure that deserving research proposals containing items that are most important to the myeloma community are selected for funding.
Many passionate patients have served as consumer reviewers in the past. The IMF is grateful for all the time and effort that IMF nominees put in, to ensure that the myeloma patient’s voice is heard. If you or a loved one is interested in applying as a consumer reviewer, please reach out to [email protected].