For immunocompromised kids, the return of measles is a crisis

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, a city that shares a border with North Carolina, is facing the threat of viruses that do not respect human-drawn lines. The recent measles outbreaks have highlighted the importance of vaccination guidelines, especially for vulnerable populations such as children with rare conditions.

According to the FDA, there are an estimated 15 million children in the U.S. with rare conditions, many of whom have developmental delays, physical disabilities, or intellectual disabilities. These children are at a high risk during the current measles outbreak, necessitating a proactive approach to vaccination and public health measures.

Families with children like mine in North Carolina are grappling with the challenges posed by the measles outbreak. The need to continue masking and taking extra precautions to protect vulnerable individuals can be difficult, especially when others around us are not as vigilant. As a parent of a 13-year-old with mild intellectual disability, I understand the importance of prioritizing my child’s safety, even if it means making sacrifices.

In the face of ongoing measles outbreaks, it is crucial for healthcare providers and government officials to prioritize public health and ensure that vaccination guidelines are up to date. The rollback of basic lessons learned from the Covid-19 pandemic can have far-reaching consequences, impacting not only vulnerable populations but entire communities.

As a rare disease parent and advocate, I urge leaders in healthcare and government to prioritize public health measures and ensure that the most vulnerable members of society are protected. While technology and innovation play a crucial role in combating infectious diseases, adherence to basic public health principles is equally important.

In conclusion, the ongoing measles outbreaks serve as a stark reminder of the importance of vaccination and public health measures. By prioritizing the safety of vulnerable populations and ensuring that vaccination guidelines are followed, we can work towards preventing the spread of infectious diseases and protecting the health of all community members.

Penelope Gatlin is a rare disease parent, advocate, and member of the Parent Advisory Board of the CSNK2A1 Foundation. Her insights shed light on the challenges faced by families dealing with rare conditions during public health crises like the measles outbreak.