Congress is currently considering potentially sweeping funding cuts to Medicaid, a program that provides life-saving health care coverage and services to those who need it most.
What is at stake for our community? The ability of millions of rare disease patients, their families, and caregivers to access free or low-cost health care benefits, including medications, transportation to doctor’s appointments, treatments, caregiving, and medical supplies.
Some of our rare disease community members have graciously agreed to share their Medicaid stories to help us understand the crucial role that Medicaid plays in their daily lives – and what they stand to lose if Congress imposes federal funding cuts.
Anyone can be diagnosed with a rare disease, and everyone deserves quality care and effective treatments. Keep reading to learn more, including how you can take action to protect Medicaid.
Amber’s Story
Diagnosed with the ultra-rare Hermansky Pudlak Syndrome (HPS) type 3 at just 11 weeks old, Amber’s journey has been one of navigating albinism, bleeding disorders, and lung disease in a world unaware of her condition.
Amber’s Medicaid journey started as a child, allowing her to access much-needed pediatric rare disease treatment and care. Now 33, Amber counts on Medicaid for treating her HPS type 3 as well as for support with transportation to and from her medical appointments.
Perhaps most crucially, Amber’s condition means she is limited in her ability to work. Despite her limitations, Amber spends time advocating for her rare disease with the HPS Network, a NORD Member Organization, to make a difference in the lives of other patients and families.
“Without the treatment and transportation services that Medicaid has provided me, I don’t know if I would even still be here,” Amber says. “I’m sharing my story because one person’s story is another person’s treasure. One story can change lives.”
Jen’s Story
In May 2024, Jen and Ryan welcomed their amazing son Jordan, unaware of the rare journey that lay ahead. After a complicated pregnancy and low-risk genetic screenings, Jordan was born prematurely, and shortly after, he was diagnosed with propionic acidemia.
New parents are no stranger to worry, but with their son’s rare diagnosis, Jen and Ryan’s worries included accessing and affording the health care that Jordan required from birth. Medicaid covered Jordan’s NICU hospitalization, which totaled $2.6 million, and covers $6,000 per month for his medications. But that’s not all.
“Medicaid has provided essential, lifesaving financial support – including the complete coverage of Jordan’s hospitalizations, medications, at-home medical supplies, special medical formula, and necessary therapies,” Jen says. “Medicaid also makes it possible for my husband and I to work full time to provide for our family.”
Now 13 months old, Jordan is a happy and curious little boy who loves spending time with his family. His parents are sharing their story to raise awareness, offer hope to other families facing similar challenges, and emphasize the role of early detection and the comprehensive coverage and support through the Medicaid program in the lives of children with rare conditions.
Valkyrie’s Story
Misdiagnosed with multiple mental health issues stemming from untreated narcolepsy, Valkyrie navigated a challenging health care system and advocated for herself in order to receive the correct diagnosis – narcolepsy – at 14 years old.
Medicaid provided essential assistance during Valkyrie’s journey, supporting her education, treatment, and even empowered her to launch her own crochet business that gives back to the LGBTQ+ community. Now an advocate for rare disease awareness, Valkyrie shares her story to inspire change and ensure others don’t face the same challenging diagnostic odyssey.
“Medicaid provided a safety net so I could finish college and eventually start my own business without relying on Social Security Disability Insurance or Supplemental Security Income,” Valkyrie says. “Without Medicaid, I wouldn’t have been able to work or attend college after high school. I wouldn’t have been able to start my own company. Medicaid is a valuable support to those of us with chronic and rare health conditions that helps us live a fulfilling life.”
Take Action
On behalf of the more than 30 million Americans living with rare disease, as well as their loved ones, NORD is fighting to protect Medicaid. We need your help. Please join the fight to protect Medicaid by taking one or more of these simple and quick actions. Thank you!
- Contact Elected Officials: Click here to view NORD’s current action alerts, including “Protect Medicaid for Rare Disease Patients.” In just one minute, you can send a message urging Congress to protect Medicaid. Your voice matters!
- Share Your Story: If Medicaid has impacted you or a loved one, share your experience in an email to [email protected] or by using this form. Real stories and lived experiences help lawmakers understand the urgent need to protect Medicaid.
- Spread the Word: Share this blog post with your networks, whether that’s by posting it on social media or emailing it to at least five people. The louder we are, the better chance we have of being heard to protect the Medicaid program!