David's Story: Medicaid is a Lifeline in Our Rural Community
Our close-knit Alaskan community knows it takes a village — and Medicaid — to raise a child.
by Maggie Hotch
My name is Maggie Hotch. I live in Klukwan, Alaska, near Haines, with my husband Daniel. Our community is extremely rural and very small; our access to the nearest major city and airport is via ferry or through Canada. I run an occupational therapy practice and Daniel is a fisherman. We have five children: Cody, Shawna, Raven, MJ, and David. I consider myself so fortunate to live in one of the most beautiful places in the world, surrounded by loving culture and family. Daniel is a member of the Chilkat band of Tlingit Natives, and I have been adopted into the tribe as a Raven.
David is 14, and truly such a joy to be around. Just being in the same room with him puts you in a good mood. He’s a Tlingit dancer and has always been moved by music, particularly Michael Jackson. He also enjoys a variety of games, especially Minecraft, and is always up for anything. He’s going to get his learners’ permit pretty soon and he’s so excited about that, because we live 20 miles from town and it’s really hard for him to meet up with his friends.
When David was born, something felt off to me. He was having trouble standing and his muscle tone wasn’t keeping pace with his development. As an occupational therapist who’d spotted some warning signs of an underlying medical issue, I started nudging our pediatrician, saying something was wrong. It turned out I was right, although it was a long process to get there, since only one lab in the U.S. can process critical samples used in diagnosis. David has Mucopolysaccharidosis Type I, also known as Hurler syndrome, a rare genetic disorder seen in about one in 100,000 births.
David’s body lacks the enzymes he needs to break down carbohydrates. This condition can cause tremendous pain and skeletal abnormalities, and affects nearly every system in the body. As a baby, David received a bone marrow transplant — there’s a tremendous shortage of Native American donors so it was truly fortunate to find a match. He also needs ongoing infusions of an artificial enzyme, which I learned to do at home since it’s not logistically feasible to transport him to a medical facility every week. Failing to get this medication would be fatal, and it can sometimes be a struggle to get it shipped to our remote community. Reliable access to care means David is more well than he has ever been, and for the most part he’s just a regular teenager who started his first job this week at our cultural center.
Medicaid covers the costs of David’s treatments, and it also funds home care for him, which is extremely important. Having a caregiver at home allowed me to return to my work, supporting people with occupational therapy through my practice and at regional schools. My work helps people build meaningful occupational routines and skills, and reduces the risks of future hospitalizations, leading to better outcomes for our predominantly Alaska Native community. Having a qualified caregiver also allowed David to attend a fine arts camp, giving him a chance to socialize with kids his age in the company of an adult to help him with tasks of daily living. There’s no way I could have taken that time away from my business and family: She’s the one who made it possible for him to have that experience and she improves his quality of life every day.
Living in a small, closeknit community is so vital for us, and it’s why I convinced my husband to live full-time in Alaska instead of switching off and spending our winters in Oregon. I really wanted those family connections. We have lots of family here, including his sisters; MJ is planning on going to the University of Alaska next year, but wants to move home to become a teacher and be close to her sisters and family. Raven is currently at UAS and planning to return home to teach at Klukwan school. Her sister MJ will be a senior next year and plans to also attend the local university to pursue her talent for Native Art. The local rural health clinic provides us with as much support as they can, and we fly to Seattle’s Children’s, about a four-hour flight, one to two times a year for monitoring and treatment.
We count on the web of family and community. It’s critical that David is able to grow up amongst his fellow Tlingit tribal members, that he gets to learn Tlingit and hear it spoken, that he gets to act as a guide to local cultural sites that people are only allowed to visit with a tribal member. So much of his culture is tied to this place. As a descendent of Tlingit civil rights activists, David feels very rooted in his community and is excited to carry on their legacy. Being disconnected from his culture would be like taking part of him away.
Medicaid has been essential for keeping David alive, but also for our whole family. The ability to rely upon Medicaid when we needed it was what allowed us to recover from the initial financial distress we experienced with David. Thanks to Medicaid, I was able to return to work and grow my practice. Our family was able to stabilize, and now no longer requires Medicaid support. When it comes to helping families achieve financial stability, and keep them stable, Medicaid is amazing.
As a provider, I also know Medicaid from a different perspective. Cuts to Medicaid would force me to radically reduce the scope of my business to care for David, depriving me of the sense of fulfillment I experience in my work. At the same time, many of my clients would no longer be able to receive my services, which would be harmful to the larger community. The three rural sites we serve are approximately 90% Medicaid and we would likely need to close all three locations if any cuts to Medicaid are made. Something people don’t see is not just my clinic services, but what we provide to the schools; there are kids who might not be able to eat at school because no one is available to support safe feeding, for example, and occupational therapy helps kids develop critical skills for independence.
Rural Alaskan communities like mine are part of the rich cultural history of the state and it’s so important that we act to preserve them. Medicaid makes it possible for David and I to play an active, contributing role in our community.