Danielle Doheny joined the International Myeloma Foundation (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 and from Dartmouth College with a Master of Healthcare Delivery Science.
This week’s blog was adapted from a presentation given by Danielle Doheny, the Director of Public Policy and Advocacy for the International Myeloma Foundation (IMF), at the IMF’s Patient and Family Seminar in Los Angeles in August 2024.
You may have wondered what IMF advocacy team members do. As the IMF’s Director of Public Policy and Advocacy, I’m the federal lobbyist working on behalf of multiple myeloma patients. Just like many industries have lobbyists, myeloma patients need someone fighting for them too. In this blog, I’ll share why advocacy is so important, how you can get involved, and some crucial Medicare changes that you should know about—changes that directly impact you.
What Is Advocacy, and Why Is It Important?
Advocacy is about making sure the voices of myeloma patients are heard by those who make important decisions—like members of Congress. Without personal stories and patient input, laws and policies that affect healthcare might not change. That’s why sharing your story as a myeloma patient is so powerful. It can move mountains and spark real change.
When I worked in a congressional office, the facts and figures were helpful, but what really made a difference were the personal stories. You wouldn’t believe how many times people were moved to tears by what patients had to say, and those stories often led to action. So, if you think, “What difference can I make?” I’m here to tell you that your voice can make all the difference in the world.
What Do We Advocate For?
At the IMF, we focus on three main areas:
- Ensure Access to Care: There are amazing new treatments available for myeloma patients, but having these treatments doesn’t mean much if you can’t access them. We work hard to ensure that every patient can get the treatment they need, without unnecessary barriers from insurance companies.
- Eliminate Financial Barriers: No one should have to choose between their medication and other essential needs. We fight to make treatments affordable, especially when it comes to expensive drugs that are taken at home, like Revlimid and Pomalyst.
- Advance Research Funding: Finding a cure for myeloma is the ultimate goal. While I’m not a researcher myself, advocacy allows me—and you—to play a part in driving research forward by ensuring there’s adequate funding.
Big Changes in Medicare You Should Know About
If you’re a Medicare patient, there are some big changes on the horizon that could significantly impact your out-of-pocket costs for medications.
Starting in 2025, Medicare will introduce an annual out-of-pocket cap of $2,000 for prescription drugs. That means no matter how many medications you need, once you hit $2,000 in a year, you won’t have to pay any more in 2025. This change happened because of advocates like you who spoke up about the burden of high drug costs. It’s a huge win!
There’s a program called the Medicare Prescription Payment Program. This program allows you to spread out your medication costs over the year, rather than paying a large sum all at once. For example, instead of paying $2,000 in January, you could opt to pay around $166 per month. The key thing to remember is that you need to sign up for this option—it won’t happen automatically.
Why Get Involved?
Advocacy is not about being an expert on policy; it’s about telling your story. If you’ve faced challenges in accessing care, paying for your medications, or navigating the healthcare system, those experiences matter. Legislators need to hear from people like you to understand why changes are necessary.
We’ve already seen success with Medicare reforms, and it’s proof that advocacy works. In fact, many of the recent changes came about because myeloma patients shared their struggles with affording medication. Your story can be the next one to make an impact.
How You Can Get Involved
If advocacy sounds like something you’d like to be a part of, we’d love to have you join us. Whether it’s participating in a congressional lobby day, sharing your story with legislators, or just learning more about how you can make a difference, there’s a place for you. And don’t worry—you don’t have to be an expert in healthcare policy. All you need to do is share your personal experiences with myeloma and why changes in the system matter to you.
At the end of the day, advocacy is about making sure that every myeloma patient gets the care they deserve. Together, we can create real, lasting change. So, let’s raise our voices and continue to fight for access to better treatments, affordable care, and the research funding needed to one day find a cure.
Connect with the IMF’s Advocacy team through this sign-up form.
Make a Difference in September with Blood Cancer Awareness Month
If advocacy appeals to you, now is a better time than any to get involved. With September being Blood Cancer Awareness Month, the IMF revived our “Do You #kNOw Myeloma?” campaign. The U.S. Congress designated September as Blood Cancer Awareness Month in 2010 to create awareness, increase fundraising, and support patients affected by all types of blood cancers.
We encourage you to explore the IMF’s Blood Cancer Awareness Month website for infographics on myeloma facts, research breakthroughs in myeloma treatment, and inspirational stories of hope and resilience from those living with the disease. We encourage you to download them from the IMF’s social media tool kit and share them in social media while using the hashtag #kNOwMyeloma.
Watch the replay of this presentation here. You can also view more informative discussions from the IMF Patient and Family Seminar in Los Angeles here.
The International Myeloma Foundation hosts 4 Patient and Family Seminars across the U.S. each year. Join us in-person or find an online event at events.myeloma.org
About Danielle Doheny
