What Is Advocacy?
Advocacy is the act of supporting a cause or idea. It involves speaking out on issues that you care about and offering ways to improve upon them. Anyone can become an advocate! The IMF’s Multiple Myeloma Advocacy Program helps guide individuals to advocate for critical health issues that affect the multiple myeloma community. Whether you are a myeloma patient, caregiver, doctor, nurse, or friend, your opinion does matter. The only way we can make a difference is to TAKE ACTION!
This map shows the U.S. states with existing oral parity laws.
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 advocacy@myeloma.org.
Over the years, the IMF has been committed to providing help for veterans with multiple myeloma cancer. In response to this need, the International Myeloma Foundation created this section for Veterans Against Myeloma, known as VAM. We have worked to collect the pertinent information for Veterans with multiple myeloma and provide key links to relevant VA websites and state veterans assistance offices.
Our veterans have sacrificed much to ensure the safety and security of our great nation. Exposure to various chemicals from Agent Orange in Vietnam, to burn pits in the Middle East means our service members put their health on the line, often unknowingly. The International Myeloma Foundation recognizes the extraordinary circumstances in which our veterans served, and we are here to make sure their sacrifices are remembered and honored by a grateful nation.
The Affordable Care Act (ACA), passed into law in 2010, requires that no one be denied insurance coverage or be charged higher rates because of a pre-existing condition such as cancer. Patients also no longer have to worry about being dropped by a plan because they have gotten sick.
Multiple myeloma patients who are uninsured and under-insured will be able to purchase a plan sold in new marketplaces. Each plan must offer 10 essential health benefits, and patients with low and moderate incomes may be eligible for tax credits that reduce their costs.
In general, anyone who has an insurance plan that they like – and remains available to them – does not need to go to the marketplace. In other words, people with private insurance through
Their employer, with individual or family coverage that they bought themselves, obtained through Tricare, or any other health plans can stick with their current insurance. They don’t need to do anything. Additionally, those eligible for Medicare cannot purchase insurance through the public exchanges.
Get Insured at Healthcare.gov
Explore more about the Affordable Care Act at healthcare.gov to learn how you can get insured. Translated materials on the ACA are also available. Learn about the basic goals of the ACA here.
Further Resources
The Cancer Insurance Checklist is designed to help you compare insurance plans and consider your health needs when shopping for insurance in your state’s health insurance marketplace/exchange.
Cancer Insurance Checklist: Guía de Cobertura Médica Para Personas con Cáncer
The Spanish language version of the Cancer Insurance Checklist is an easy-to-use guide to assist people with cancer, a history of cancer, or at risk for cancer, to choose a health insurance plan.
Find navigator organizations, including community health centers in your area.
HealthCare.gov/CuidadoDeSalud.gov
Learn how the health care law affects you and view your health insurance choices at HealthCare.gov.
Kaiser Family Foundation's ACA information page includes a subsidy calculator with plan costs by zip code.
The All Cancers Congress (ACC) was coordinated by the International Myeloma Foundation to give the cancer advocacy community a chance to discuss their individual advocacy efforts and legislative priorities. The event was developed to bring groups together to prevent advocates from working in silos and encouraging teamwork. The first annual meeting was widely attended, with 17 different organizations participating. Subsequent meetings have been held virtually.
What is the World Trade Center Health Program?
The World Trade Center (WTC) Health Program provides medical monitoring and treatment for emergency responders, recovery, and cleanup workers, and volunteers who helped after the terrorist attacks on September 11, 2001, at the World Trade Center, the Pentagon, and the crash site near Shanksville, Pennsylvania. Additionally, people who were present, worked, resided, or attended school, childcare, or adult daycare in the New York City disaster area are eligible for health evaluation and treatment.
This program is regarding health care coverage. If you want to learn more about financial compensation available, please see the Victim Compensation Fund Guide. The WTC and VCF are funded separately from one another through the Zadroga Act.
What is the September 11th Victim Compensation Fund (VCF)?
The VCF was created to provide financial compensation for any individual (or a personal representative of a deceased individual) who suffered physical harm or was killed as a result of the terrorist-related aircraft crashes of September 11, 2001 or the debris removal efforts that took place in the immediate aftermath of those crashes. The purpose of this fund is to provide money for health care and other costs to those who suffered harm as a result of the 9/11 attacks.
Myeloma Action Month happens every year in March to encourage individuals and groups to take actions that positively impact the myeloma community.
This year, the IMF invites you to take action by answering the question: What is your #MYelomaSTORY? Learn more the Myeloma Action Month (MAM) website.
The advocacy team periodically hosts webinars or other events to provide education and insight on particular topics of interest.
The IMF’s Advocacy Program helps guide individuals to advocate for critical health issues that affect the multiple myeloma community. The IMF will work with you at the state and local level to support legislation to improve the lives of U.S.-based myeloma patients. Contact IMF Director of Public Policy and Advocacy Danielle Doheny to learn more.