{"id":278693,"date":"2025-05-01T18:08:29","date_gmt":"2025-05-01T22:08:29","guid":{"rendered":"https:\/\/rarediseases.org\/?p=278693"},"modified":"2025-12-02T16:45:47","modified_gmt":"2025-12-02T21:45:47","slug":"rare-faces-of-medicaid","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rare-faces-of-medicaid\/","title":{"rendered":"Rare Faces of Medicaid: What\u2019s at Stake for the Rare Community?"},"content":{"rendered":"

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.<\/span>\u00a0<\/span><\/p>\n

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\u2019s appointments, treatments, caregiving, and medical supplies. <\/span>\u00a0<\/span><\/p>\n

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 \u2013 and what they stand to lose if Congress imposes federal funding cuts.\u00a0<\/span>\u00a0<\/span><\/p>\n

Anyone<\/span><\/b> can be diagnosed with a rare disease, and<\/span> everyone <\/span><\/b>deserves quality care and effective treatments. Keep reading to learn more, including how you can take action to protect Medicaid.\u00a0<\/span>\u00a0<\/span><\/p>\n

Amber\u2019s Story<\/span><\/b><\/h2>\n

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Diagnosed with the ultra-rare Hermansky Pudlak Syndrome (HPS) type 3<\/a> at just 11 weeks old, Amber\u2019s journey has been one of navigating albinism, bleeding disorders, and lung disease in a world unaware of her condition.\u00a0<\/span>\u00a0<\/span><\/p>\n

Amber\u2019s Medicaid journey started as a child, allowing her to access much-needed pediatric rare disease treatment and care.<\/span> 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.\u00a0<\/span>\u00a0<\/span><\/p>\n

Perhaps most crucially, Amber\u2019s condition means she is <\/span>limited in her ability<\/span> to work. Despite her limitations, Amber spends time advocating for her rare disease with the HPS Network, a NORD Member Organization<\/a>, to make a difference in the lives of other patients and families.\u00a0 <\/span>\u00a0<\/span><\/p>\n

\u201cWithout the treatment and transportation services that Medicaid has provided me, I don\u2019t know if I would even still be here,\u201d<\/strong> Amber says. \u201cI’m sharing my story because one person’s story is another person’s treasure. One story can change lives.<\/strong>\u201d<\/span>\u00a0<\/span><\/p>\n

Jen\u2019s Story<\/span><\/b>\u00a0<\/span><\/h2>\n

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In May 2024, Jen\u202fand 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<\/a>. <\/span>\u00a0<\/span><\/p>\n

New parents are no stranger to worry, but with their son\u2019s rare diagnosis, Jen and Ryan\u2019s worries included accessing and affording the health care that Jordan required from birth. <\/span>Medicaid covered Jordan\u2019s NICU hospitalization, which totaled $2.6 million, and covers $6,000 per month for his medications. But that\u2019s not all. <\/span>\u00a0<\/span><\/p>\n

\u201cMedicaid 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,\u201d<\/strong> Jen says. \u201cMedicaid also makes it possible for my husband and I to work full time to provide for our family.\u201d<\/strong><\/span>\u00a0<\/strong>\u00a0<\/span><\/p>\n

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.<\/span>\u00a0<\/span><\/p>\n

Valkyrie\u2019s Story<\/span><\/b>\u00a0<\/span><\/h2>\n

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Misd<\/span>iagnosed<\/span> 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 \u2013 narcolepsy<\/a> \u2013 at 14 years old.<\/span>\u00a0<\/span><\/p>\n

Medicaid provided essential assistance during Valkyrie\u2019s 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\u2019t face the same challenging diagnostic odyssey.\u202f\u202f<\/span>\u00a0<\/span><\/p>\n

\u201cMedicaid 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,\u201d<\/strong> Valkyrie says. \u201cWithout 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.\u201d\u202f<\/strong><\/span>\u00a0<\/strong><\/p>\n

Take Action<\/span><\/b>\u00a0<\/span><\/h2>\n

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!\u00a0<\/span>\u00a0<\/span><\/p>\n