Myeloma and Health Equity: One Patient’s Fight for Better Care

The International Myeloma Foundation continues to share this collection of patient and care partner stories from those who have completed the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community.  

(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 12-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed second class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact on changing healthcare laws and policies. If you have questions or inquiries, or if you would like to sign up for future LAMC courses, please email Michael Riotto at [email protected].)  

This week's blog was written by Valarie Traynham — a 10-year myeloma survivor, patient advocate, health equity champion, and support group leader who has encountered issues and challenges in access to expert providers, copay and insurance issues, rare/underserved disease, copay accumulator, invisible illness, oral parity, as well as step-therapy/fail first underserved community. Here is Valarie's story.

How it all started

Exhaustion took over my life—not just tiredness, but bone-deep, can’t-get-out-of-bed exhaustion. Nosebleeds, recurring infections, and relentless back pain followed. I couldn’t shake what felt like the flu from hell. Finally, I saw my primary care doctor. “Another infection,” I told her. Bloodwork revealed high protein levels, and soon I was sitting across from a hematologist. I wasn’t surprised—I’d dealt with anemia since my twenties.  

But the words that came next changed everything: “You have multiple myeloma. It’s an incurable blood cancer.”

I was 42. The doctor said I might have 3–5 years. I remember thinking, “I’m not going to see 50.”

The scary, lonely beginning

Hearing “incurable cancer” is like having the ground disappear beneath your feet. I was terrified and alone, unsure where to turn. The fear was overwhelming. But I quickly realized my community doctor, wonderful as she was, wasn’t enough. I needed an expert in multiple myeloma. Getting a second opinion was the best decision I ever made—it saved my life. Treatment was intense: triplet therapy combinations and a stem cell transplant. It was grueling, but it got the cancer under control.

Plot twist: Cancer round 2

Just as I started to breathe again—BAM—a routine mammogram at 46 showed something suspicious. Breast cancer. Two cancers? This time, I wasn’t the overwhelmed woman from four years earlier. I knew how to navigate the system, advocate for myself, and fight. My treatment included a mastectomy and chemotherapy—different cancers, different treatments, but the same determination.

The reality of being a Black woman in healthcare

As an African American woman, I know the statistics: Black patients often get worse care, later diagnoses, and poorer outcomes. That knowledge was terrifying and motivating. I couldn’t just be a patient—I had to be informed, assertive, and sometimes “difficult” to get the care I needed.

Insurance battles that shouldn’t exist

Fighting cancer is hard enough without battling your insurance company. I faced oral parity challenges—chemo pills weren’t covered like IV treatments. Step therapy forced me to try cheaper, less effective drugs first. Co-pay accumulators reset my out-of-pocket costs, even when drug companies helped with co-pays. The system felt rigged, making an already tough journey even harder to afford. We need lawmakers to close these loopholes and protect patients from hidden costs.

These aren’t just paperwork problems—they’re life-or-death barriers.

Finding my voice

Somewhere along the way, I stopped being just a patient and became an advocate. Maybe it was the insurance fights, or seeing others go through the same struggles, or just getting angry enough to act. I’ve learned to turn anger into action, gained policy knowledge, and found my voice. Patient stories can ignite real change.

Ten years later

It’s been 10 years since that first diagnosis. I’m 52 now—not just surviving but thriving. That scared 42-year-old who thought she wouldn’t see 50? She’s now fighting for herself and every patient who comes after her.

What I want you to know

If you’re newly diagnosed, struggling with the healthcare system, or feeling overwhelmed and alone: I get it. Here’s what I’ve learned:

• Get that second opinion, especially for serious diagnoses.  
• Don’t be afraid to speak up and advocate for yourself.  
• The insurance battles are real, but you can fight them.  
• You’re stronger than you think.  
• Your voice matters.

Why I keep fighting

I keep telling my story and fighting for change because no patient should face the barriers I did. We shouldn’t have to become insurance experts while fighting for our lives. We shouldn’t have to worry about whether our race affects our care. We shouldn’t have to choose between rent and medication.

Healing isn’t just about treating disease—it’s about fixing the system that’s supposed to help us heal. That’s the work I’ll keep doing, one story, one policy, one patient at a time. Every day I’m here is a gift. I’m using it to advocate for those who will one day hear, “You have cancer.”  

No one should face that moment without support, answers, and someone fighting to make the path forward easier.

My motivation and inspiration

My faith, my family, and my cancer journey have shaped who I am and why I advocate. I’ve lived through fear, uncertainty, and financial barriers—and I’ve come out on the other side with a deep commitment to making things better for others.

I’m inspired by the strength of the patient community and motivated to use my voice to fight for equitable care, especially for underserved communities.  

Every story matters, and if sharing mine helps even one person feel seen, supported, or empowered to speak up, that’s why I keep going.

About the Advocacy Master Class

At Patients Rising, we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voice! That is why we offer our Advocacy Master Class in collaboration with the International Myeloma Foundation (IMF). The master class is designed to train patients, caregivers, and citizens in the art of healthcare advocacy.      

This course is a truly comprehensive way to learn how participants can raise their voice and create a better tomorrow for all patients and caregivers.  The IMF, in collaboration with Patient Rising, is spearheading the Advocacy Master Class. For more information on the Advocacy Master Class, email Michael Riotto at [email protected].

About Patients Rising    

Patient Rising’s mission is “empowering every patient in America to advocate for reforms placing them, alongside their doctors, in control of their healthcare choices” with a bold vision: “Healthcare is personal. By partnering with patients, we envision a future where every individual has healthcare options that align with their unique needs and circumstances.” To learn more about the advocacy organization, visit PatientsRising.org.