Q&A: ‘Unacceptable’ medical deserts leave rural patients with rare diseases stranded
Approximately 14% of the U.S. population lives in rural areas, where access to health care may be limited by insurance coverage, geography and infrastructure, and provider shortages, according to HHS.
Known as “medical deserts,” these areas can lead to higher morbidity and mortality as well as adverse effects on health services.
“Medical deserts should go away,” Kristin Hatcher, patient advocate and pediatric and rare liver diseases program director at the Global Liver Institute (GLI), told Healio. “In 2025, it is completely unacceptable that we can do delicate heart surgery via robotics, but we cannot seem to connect rural patients in the U.S. with an expert close enough to them so that they do not have to travel across state lines to see someone.”
A resident of rural North Mississippi, Hatcher is no stranger to medical deserts. Diagnosed with alpha-1 antitrypsin deficiency (AATD) at age 43 years, Hatcher is nearly 4 hours from University of Mississippi Medical Center, the only teaching hospital in the state. According to Hatcher, it is faster to drive to the airport, board a flight to Nashville and drive to her specialist’s office than it is to go to the hospital.
“I save over 2 hours, even after having to take three modes of transportation,” Hatcher said. “This makes it difficult to time appointments, so I cannot imagine what it is going to look like when I become symptomatic.”
According to NIH, AATD is a rare genetic condition in which the liver does not produce enough AAT, a protein that protects the lungs and liver from damage.
“Some people may not have symptoms, while others may have serious lung problems, like chronic obstructive pulmonary disease or emphysema, or liver complications, including cirrhosis or even liver failure,” Hatcher said.
In an interview with Healio, Hatcher details how AATD impacts her day-to-day life and how living in a medical desert affects her care. She also discusses the importance of patients sharing their experiences with other affected individuals and even policymakers.
Healio: Can you further describe what AATD is?
Hatcher: AATD is inherited. Patients with AATD have unique experiences, because there are many genetic variants. People inherit two alleles, one from each parent, so their combination affects their risk for AATD. Common combinations include MM, MZ, SZ and ZZ, which range from normal with no AATD to severe deficiency.
Other rare alleles exist, and different combinations can lead to varying levels of AAT deficiency.
Healio: How does AATD impact your daily life?
Hatcher: I am an MZ, or a carrier who is lung and liver affected. I am short of breath when I exercise and I have issues with jaundice that makeup cannot cover, but those are not the worst parts of my experience.
To keep from constantly getting sick, I had to change careers and get out of the classroom due to my weakened immune system. Whenever I feel sick, I need to get tested for everything. I am also wary about my liver progression, so I am overly proactive with my diet and exercise.
The drastic changes I had to make in my life are what make some days hard for me, because they remind me I have to be hypervigilant about my health. I think AATD is related to my sleeping and gastrointestinal issues that affect me daily, but not knowing for sure makes life stressful.
I am the oldest diagnosed person in my family. My dad was my age when he became symptomatic, and he was completely disabled within 10 years. The worst part was that as his physical symptoms worsened, his mental status followed. I think about that a lot.
Healio: What is the process like for you to receive care?
Hatcher: Delay in care should be my middle name at this point. Flights from Tupelo, Mississippi, are notoriously delayed and if the flight manages to be on time, there is the possibility of traffic during the drive. The specialists cannot wait on me.
I deal with anxiety, sleeplessness and astronomical costs before I even walk in the doctor’s office. I have severe anxiety days before the appointments.
With anxiety at an all-time high, the bill matches it. Transportation, hotel and food for these trips usually run around $600 before the copay and tests.
Not only that, but I have to take my laptop to all these places to answer emails or even take meetings for work.
Healio: Do you think having this specific disease affects your care?
Hatcher: With AATD, providers tend to focus more on my lung function, since most of the research, especially for a cure, has been in this space. There are also limited specialists and funding to support greater knowledge in rare diseases.
There is no blueprint for how to treat a patient with AATD. We are all very different and need a multidisciplinary team, which unfortunately is hard to find in rural areas.
Another problem is that the affected organs are so stigmatized. Lungs are associated with smoking and the liver is associated with drinking. The first question providers ask is, “How much do you drink?” which is followed by, “You know drinking is terrible for your liver.”
Healio: What advice would you give physicians in medical deserts who care for patients with rare diseases?
Hatcher: Make sure you offer compassionate care and work with us, not for us.
Especially in medical deserts where care is limited, please do not pretend to know everything. We know that you may never come across a rare disease patient in your entire career, but when you do, we want to be cured as much as you want to help.
I would prefer a doctor refer me to a specialist than give me the wrong diagnosis, which happens more often than you think. There is little knowledge about rare diseases, especially in medical deserts, so make us part of the care team and learn directly from us. We might surprise you with how much research we have done ourselves.
With more patient trust and exposure, these medical deserts may one day have specialists certified in these areas.
Healio: What can be done to improve awareness about these diseases?
Hatcher: I taught high school for almost a decade, and not once did I ever have a student say, “I want to be a hepatologist when I grow up” or “I know so much about rare diseases” or “I would love to work with the liver.”
This should and is changing via a new GLI initiative called Rare Science Fairs, which we are piloting in North Mississippi. We provide students in middle school and high school an opportunity to do research about the liver and rare liver diseases and teach them how to advocate based on their findings.
Our goal is to create a space for individuals to become rare liver champions. GLI will partner with classrooms to encourage creative delivery of information through research posters and presentations. Each student, or group of students, will create a poster that educates their community about a rare disease or a concern of their choice, making everyone a rare ally.
Healio: Why is it important for patients with rare liver disease to share their stories?
Hatcher: At GLI, we believe that sharing stories can make patients feel less siloed. Each patient story can have significant impact on decision-making, especially in the policy space, and is a data point that shows the impact of both positive and negative changes in the health care system.
GLI’s Advanced Advocacy Academy brings together liver patients in D.C. and trains them how to effectively share their “living experience” with different people, whether that be a policymaker or a friend. I went for the first time last year and learned more in 3 days about myself and how to effectively share my story than I ever did in any medium. I shared my story with various policymakers and helped get the Safe Step Act passed in Tennessee in 2022.
Patient stories do not just impact the policy space — they also make a huge difference in research, innovation and in patients’ daily lives.
References:
- About rural health. https://www.cdc.gov/rural-health/php/about/index.html. Published May 16, 2024. Accessed Feb. 21, 2025.
- Access to health care in rural America: Current trends and key challenges. https://aspe.hhs.gov/reports/health-care-rural-america. Published Oct. 31, 2024. Accessed Feb. 21, 2025.
- Alpha-1 antitrypsin deficiency. https://www.nhlbi.nih.gov/health/alpha-1-antitrypsin-deficiency. Accessed Feb. 21, 2025.
- Brînzac MG, et al. Eur J Public Health. 2023;doi:10.1093/eurpub/ckad107.
- Why health care is harder to access in rural America. https://www.gao.gov/blog/why-health-care-harder-access-rural-america. Published May 16, 2023. Accessed Feb. 21, 2025.
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Healio Interviews