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!
The IMF Advocacy program trains and supports concerned individuals to advocate on health issues that affect the myeloma community. Working at both the U.S. state and federal level, the IMF supports legislation that betters the lives of multiple myeloma patients nationwide.
The Coalition to Improve Access to Cancer Care (CIACC) has been hard at work ensuring patients have access to the treatments that are recommended by their physicians through the oral chemotherapy parity legislation around the country. We’re thrilled to inform you that 43 states and the District of Columbia have passed these critical laws to increase access to oral oncology drugs that are crucial to patient survival.
We need YOUR help to get this information to community oncologists! Please print a copy of your state fact sheet to take with you to your next visit with your clinician. Click on your state below to download the fact sheet. The new laws apply to all oral anti-cancer medications, so they will be helpful for every oncologists.
THANK YOU for helping us spread the word!
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.”
- 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].
Over the years, the IMF has been committed to providing help for veterans with multiple myeloma cancer. Talking with those who served has made us aware that many need resources to better understand their diagnosis, find information about myeloma and support one another through mutual experiences 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, state veterans assistance offices, and national Veterans Service Organizations (VSOs) whose Service Officers help vets with the VA process.
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.
Additionally, our advocacy team regularly meets with congressional staffers on wide ranging issues from those that impact patient access to drugs to fighting for increases in research funding through programs like the Congressionally Directed Medical Research Programs. We train and guide patients and family through the pitfalls of patient activism and provide opportunities for every patient to take action from their own home. Welcome to Veterans Against Myeloma.
The IMF lists resources that can help guide you when purchasing a new health insurance plan through the Affordable Care Act.
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.
Update on the Affordable Care Act: What Does It Mean for Myeloma Patients?
IMF has continued to monitor ACA implementation and advocate for myeloma patients as the new plans have kicked in. With our coalition partners, the Coalition to Improve Cancer Care (CIACC), the IMF has submitted several letters to federal and state officials to advocate for increased transparency and strengthened protections for cancer patients.
Still mystified by the Affordable Care Act? Check out our FAQ document for answers to some commonly asked questions.
Since the passing of the Affordable Care Act in 2010, many changes have occurred to Medicare with more to come in future years. We’ve created a list of frequently asked questions to help Medicare beneficiaries navigate these changes.
Questions for patients to consider when shopping for a new health insurance plan through a new health exchange.
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.
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.
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.
In this video, experts discuss everything you need to know to apply for health insurance coverage and discuss questions that all multiple myeloma patients should ask when searching for a new insurance plan. Learn where to apply, who can help, and what to keep in mind as a myeloma patient. The speakers also provide a broad national overview of these policies and give you resources to learn more about what is happening in your state.
Watch this easy-to-understand video from the Kaiser Family Foundation for an overview of what ACA implementation means for different populations.
Use this chart to find out if your state has its own exchange and website for consumers to select and purchase plans or if your state is offering plans through HealthCare.gov.
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.
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.
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.
Over the years, the IMF has been a resource for first responders seeking information about myeloma. Having successfully worked on behalf of first responders on the James Zadroga 9/11 Health and Compensation Reauthorization Act, the IMF has learned much about the effects of debris and particulate matter exposure on the human body. Firefighters are subjected to such exposures on a near daily basis and the cancer occurrence rate for these first responders is historically higher for every major form of cancer, including myeloma. Firefighters are developing myeloma and other cancers earlier and at a higher rate than the general population.
Risk reduction and prevention strategies are the first step in ensuring first responders have the best possible health outcomes now and in the future. A multi-pronged approach is needed in order to make first responders aware of the dangers, provide those responders with mitigation strategies that work, and educate providers as to the additional exposures to which firefighters are exposed.
Every year we ask patients to push their cities and states for proclamations that March is Myeloma Action Month, but it doesn’t have to end in March! The same basic principles behind gaining proclamations works for other advocacy awareness activities. Click Here to view our advocacy self-help toolkit to learn more.
The advocacy team periodically hosts webinars or other events to provide education and insight on particular topics of interest.
Our Advocacy Team
Danielle Doheny joined IMF after a six-year career on Capitol Hill where she worked as an adviser to two members of Congress. As a Congressional staffer, Danielle’s primary focus was on healthcare and issues related to energy, the environment, science, and technology. In her role with the IMF, she advocates on behalf of the multiple myeloma community to the executive and legislative branches of the federal government. Danielle’s father is a multiple myeloma patient, and she has a unique passion for her work on behalf of patients and their families. Danielle graduated cum laude from Thiel College with a Bachelor of Arts degree in History.