Advocacy Resources

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. 

What is Oral Parity?
What is Oral Parity?

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!

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Veterans Against Myeloma

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.

Veterans Against Myeloma (VAM) 

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.

View VAM Booklet

VAM Trifold

Navigating the Affordable Care Act (ACA)

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.

Affordable Care Act FAQ

Still mystified by the Affordable Care Act? Check out our FAQ document for answers to some commonly asked questions.

Medicare and the Affordable Care Act FAQ

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.

Multiple Myeloma Insurance Questionnaire

Questions for patients to consider when shopping for a new health insurance plan through a new health exchange.

Cancer Insurance Checklist

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.

Enrollment Assistance

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

Kaiser Family Foundation's ACA information page includes a subsidy calculator with plan costs by zip code.

Navigating the Health Insurance Marketplaces

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.

What the ACA Means for You?

Watch this easy-to-understand video from the Kaiser Family Foundation for an overview of what ACA implementation means for different populations.

Where to Find My State Exchange?

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.

9/11 Victims and First Responders

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. If you are seeking a treatment program, please click here to access our WTC Health Program Guide.

Firefighter Resources

Firefighter Initiative

The Three Key Fire Fighter Cancer Studies

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.

Advocacy Toolkit

Advocacy Toolkit

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.

Educational Webinars

The advocacy team periodically hosts webinars or other events to provide education and insight on particular topics of interest. 

Our Advocacy Team

Robin Levy
Robin Roland Levy
Senior Director, Public Policy and Advocacy
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Robin Levy
Robin Roland Levy
Senior Director, Public Policy and Advocacy

Robin received her Bachelor of Arts in Political Science and Jewish Studies from Stockton University in Pomona, New Jersey, and her law degree from George Mason University, School of Law in Arlington, Virginia. She has over a decade of experience in policy analysis, advocate and public outreach, and program and budget management. Robin began her career in the Executive Branch of the federal government, working in the White House Counsel's office during the Clinton Administration. She is currently the Senior Director of Public Policy and Advocacy at the International Myeloma Foundation. Prior to this, Robin was the Director of Public Policy and Advocacy for the Lymphoma Research Foundation as well as the Assistant Regional Director of the Anti-Defamation League, both where she managed the policy and advocacy portfolio.

Danielle Doheny Headshot
Danielle Doheny
Director, Public Policy & Advocacy
Learn More
Danielle Doheny Headshot
Danielle Doheny
Director, Public Policy & Advocacy

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.

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Source URL: https://www.myeloma.org/advocacy-us/advocacy-resources