By Michele Rayes, CDC Ambassador
My name is Michele. I’m a wife, a mother, a rare disease patient, and a cancer survivor. It’s those last two identities that have shaped my path and fueled my passion as a fierce patient advocate. I’ve lived through the challenges so many patients face — step therapy, delayed diagnoses, prior authorization hurdles, and the struggle to find knowledgeable physicians.
My journey began over 30 years ago when I was diagnosed with thyroid cancer. During surgery to remove the cancer, all of my parathyroid glands were inadvertently removed. While any cancer diagnosis is life-altering — especially when it returns despite doing everything right — nothing prepared me for the lifelong impact of a chronic, rare disorder caused by the very surgery meant to save me.
Nearly 24 years later, I stumbled into a presentation on hypoparathyroidism. I thought I was managing well until I heard others describe symptoms I had experienced for decades without realizing they were part of the disease. That day changed everything. I found a community I didn’t know I needed, people who truly understood me. A year later, after attending the full annual conference, I knew I had to do more, not just for myself, but for others like me.
I began volunteering with the HypoPARAthyroidism Association, and five years later, I left my career to help lead the organization. Our mission is to empower patients through education, not just about their condition, but about navigating the complex healthcare system. We have offered classes on self-advocacy, applying for disability, understanding insurance terminology, and more. We also collaborate with other organizations to fill critical gaps — whether it’s help with prior authorizations, financial assistance, or transportation to medical appointments.
We’re equally committed to educating clinicians about the latest research, treatment guidelines, and emerging therapies. And we don’t stop there! We advocate at both the state and national levels for policy reforms that directly impact patients. From pharmacy benefit manager (PBM) reform to pediatric rare disease vouchers and copay accumulator bans, we fight for change. We even hosted an Externally Led-Patient-Focused Drug Development (EL-PFDD) meeting that helped lead to the first FDA-approved drug for our condition. But access remains a challenge, and we continue to push for solutions. We’ve also provided public testimony at Drug Utilization Review (DUR) meetings, where Medicaid coverage decisions are made—because patients need a voice at every level.
At the HypoPARAthyroidism Association, we believe advocacy must go beyond emotional support. Managing a chronic condition is hard enough — navigating the healthcare system shouldn’t make it harder. That’s why we’re grateful for partners like the Chronic Disease Coalition, whose support strengthens our ability to serve patients more effectively.