My teenage son has Okur-Chung neurodevelopmental syndrome (OCNDS), an ultra-rare genetic disorder caused by a mutation on the CSNK2A1 gene, which creates the CK2 protein present in every cell in the body. Each patient is affected differently, but common symptoms include autism, intellectual disabilities, short stature, low muscle tone, and speech delay. Last year, he developed autoimmune encephalitis, which resulted in a two-month hospitalization. He is currently undergoing treatment that includes regular intravenous immunoglobulin infusions and a transplant rejection medication that severely suppresses the immune system.
Ever since the Covid pandemic began, my family has completely changed our lives to protect his health. I work remotely, foregoing work travel and in-person meetings to limit the chance of catching Covid or any other virus. My husband left the workforce to become a stay-at-home parent and homeschool our son to limit his exposure to illness. When we venture out to places like the local library, museum, or farm near our house, we stay safe by masking and social distancing.
Those precautions are now particularly urgent. North Carolina is one of the 32 states currently facing a measles outbreak. The disease is primarily spreading through school-age children and popping up in some of the most common communal gathering places for families.
The resurgence of measles is a threat to the health of every child, but for immunocompromised kids like mine, it is catastrophic.
The measles outbreak has compounded our inability to socialize or leave the house without extreme planning and safety measures. It’s also a reminder of the shortcomings of health care innovation without a commitment to the basics of health and safety: vaccines, masks, and clean air.
Skeptical friends — and even health care professionals — tell me that fear of measles is overblown, either because they don’t believe the threat is real, or because they have such confidence in medical innovation, they don’t believe an old disease like measles can cause much harm.
I’m very much a believer in the progress of health care and spend my professional life working with innovative medtech devices and software that benefits patients. In my personal life as a rare disease mom, I’m a beta tester for Citizen Health — an artificial intelligence health care company for rare disease parents — and a member of the parent advisory board for the CSNK2A1 Foundation, which supports those with OCNDS. I believe in the promise of technology, and the people working at the cutting edge of health care. But the response to the measles outbreaks has emphasized how little the U.S. seems to remember from Covid.
When we were in the midst of Covid, everyone in the U.S. felt the pressures of the pandemic in some way. States handled it differently, but some consensus formed around masking, especially in medical settings, and clean air. We also had the benefit of unified federal support for some of the fastest vaccine innovations the world has ever seen.
At the same time, however, misinformation demonized everything from vaccine science to the actual impact of masking to public health workers. This misinformation and lack of coordination between state and federal investment in basic public health standards have brought us to the growing public health crisis today.
According to the Centers for Disease Control and Prevention, measles can live for up to two hours in an airspace after an infected person leaves an area. If you get measles, up to 90% of the people close to you who don’t have immunity will also become infected. Measles causes lasting damage, weakening the immune system, making people vulnerable to other infections for months or years. Children who recover can still face devastating ear infections, pneumonia, diarrhea, dehydration, malnourishment, blindness, and brain swelling.
Yet in schools, there’s been little progress in getting adequate air filtration in place to limit child-to-child transmission. There was parent action during the early days of Covid to get air filtration systems into schools that districts shut down, plus federal programs to update filtration and HVAC systems that districts struggled to access the funding for back in the early 2020s. However progress has stalled. Modern tools like air filtration are important in preventing the spread of illness, including measles, but discussions around implementing such safety measures is still viewed as extreme, excessive, or even irrational despite the growing pool of evidence that air filtration leads to better education outcomes for children.
In the midst of these realities, I take my son to his intravenous immunoglobulin infusions, where he is surrounded by other immunocompromised children. Most of the medical professionals who treat these children do not even wear masks as they move from room to room. Every time we show up masked and ready for treatment, there are judgmental glances from other patients and staff, a jarring reaction to basic precautions in this care setting.
Luckily, my family is fully vaccinated against measles, and North Carolina has relatively high vaccination rates (an estimated 94% of kindergarteners completed the measles, mumps, and rubella vaccine series in North Carolina for the 2024-205 school year), but there are new pushes to roll back school enrollment vaccine mandates across the country. Our neighboring state of South Carolina has nearly 1,000 cases of measles, primarily happening in Spartanburg County, where vaccine exemptions are on the rise. Spartanburg shares a border with North Carolina, and we know viruses don’t respect human-drawn lines.
There are an estimated 15 million children with rare conditions like my son across the U.S., and many of them have developmental delays, physical disabilities, or intellectual disabilities that put them at extremely high risk for the current measles outbreak. My family’s situation in North Carolina may seem extreme, but hundreds of thousands of families are making the same life-or-death decisions as measles continues to spread. Families like ours are being left behind by the rollback of basic lessons from Covid, and the wider public health impacts are bad for everyone in impacted communities.
It is hard to tell a 13-year-old with mild intellectual disability that we have to continue to mask and be more careful than everyone else, especially when he sees others going to an arcade or his favorite thrift store without that concern. I’ll continue to do everything I need to do to keep him safe. But I ask our leaders in health care and government to remember we need more than technology and innovation to protect public health. We also need to get its basic tenets right.
Penelope Gatlin is a rare disease parent, advocate, and member of the Parent Advisory Board of the CSNK2A1 Foundation.
