When life with NMOSD gives you lemons, make lemonade

Biting into a raw lemon is always a shocking experience no matter how many times you’ve done it. The smell of a lemon may be fresh and inviting, but the taste? Not so much. Yet when you take a sip of fresh lemonade on a hot day, it’s pleasant and refreshing.

I’ve thought about lemons and lemonade often since 2017, when my youngest daughter, Bella, was diagnosed with a rare illness called neuromyelitis optica spectrum disorder (NMOSD). She was only 9 at the time. When her tests were positive for anti-aquaporin-4 antibody levels, one of the criteria for diagnosing NMOSD, I was terrified. I knew nothing about NMOSD, including how rare it is, what to do to treat it, or even its prognosis. Nevertheless, I made a promise to Bella that her fight would also be my fight.

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Fast forward six years, and Bella is currently in high school, preparing to turn 16. She is happy and stable, for the most part. As her mom and promise keeper, I have the dream job of educating people about health insurance accessibility. I write a column for a company that is dedicated to elevating the voices of people with rare diseases. I lead support groups for people who are affected by NMOSD. And I even use my voice to advocate for those with rare diseases to members of Congress. This is particularly true during Rare Disease Week on Capitol Hill in late February.

While many people say that I’ve achieved the lemonade aspect of our NMOSD journey, I’ll confess that while we’re close to achieving that ice-cold, sweet, refreshing lemonade, we’re not there yet. While the U.S. Food and Drug Administration has approved three treatments for NMOSD, there still is no cure, and treatments are expensive. Testing can be delayed for some patients, particularly in rural or underserved communities.

While we were lucky to have access to doctors who specialize in NMOSD at Children’s Hospital Colorado and University of Colorado Hospital, this isn’t the case for everyone. As if that weren’t scary enough, diagnosing NMOSD in children is even more difficult. I truly believe that Bella is alive because we had access to care and the specialists we needed to diagnose and treat her quickly.

Making my voice stronger

This year, I had the opportunity to return to Capitol Hill in Washington, D.C., to advocate for H.R. 4758, the Accelerating Kids’ Access to Care Act. This bill would require “state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers for five years without undergoing additional screening requirements, unless the state has an agreement with other states that governs coverage of children with medically complex conditions that is in accordance with specified guidance from the Centers for Medicare & Medicaid Services.” While the bill seems like a no-brainer to me, it’s not, and a lot of support is needed for it to pass.

Medicaid is partially a state-funded program, and while care is covered in the state the recipient is in, it does not provide coverage for out-of-state care, except in emergencies. This hits home for us on many levels, as we have been Medicaid recipients for years. While there are specialists here in Colorado that Bella can see, experts in NMOSD are out of state and, therefore, out of reach due to our Medicaid coverage.

This year’s trip to Washington, D.C., came with many challenges. Bella became very ill just a week before I left for the trip. She was diagnosed with pancreatitis, influenza B, and COVID-19, all at the same time. Her lipase level (used to detect pancreatitis) was over 1,800 U/L. The normal range for adults younger than 60 is 10 to 140 U/L. She has also been off her NMOSD treatment for almost a year, due to insurance denials, various side effects, and now, an inactive Medicaid insurance status pending confirmation of a disability (which we sent months ago).

While I considered staying with Bella and canceling the trip, she spoke to me about the importance of using my voice to advocate for her and others in our rare disease community. There was so much strength in her voice. Despite my fears and stress, I made it to Capitol Hill. During my meetings, my voice was stronger thanks to Bella. The lemonade was more refreshing than ever.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).