When Robert F. Kennedy Jr. was appointed secretary of the U.S. Department of Health and Human Services in February 2025, I knew my life would become more complicated.

I am among the estimated 14 million Americans under age 65 who are considered immunocompromised; an additional 58 million over age 65 have immune systems that are naturally slower to respond, making them less effective than they once were.

Under Kennedy’s leadership, protection from infectious disease through herd immunity and the promise of groundbreaking discoveries through mRNA vaccine technology have both crumbled. The hope for autoimmune disease treatments that don’t suppress the immune system has faded, leaving people like me vulnerable to pathogens and infections for the foreseeable future. As the current cyclospora parasite outbreak widens across the country, the threat to the immunosuppressed community has grown.

I’ve been on Ocrevus, a B-cell depleting medication, to treat multiple sclerosis since 2017. Prior to my diagnosis, I spent 13 years searching for the cause of my severe weakness, fatigue and involuntary muscle movements. Having seen how my nervous system deteriorated without medication, I recognize the vast improvements that treatment has provided me. Increased strength allows me to walk further and for longer than before.

But treatment for autoimmune disease comes with severe risks, including an increased risk of cancer, severe colon inflammation and the possibility of life-threatening infections. A virus or bacteria that for most people may pose an inconvenience can be for me a threat to my life.

In July 2025, the Centers for Disease Control and Prevention scaled back a surveillance program that monitors foodborne illnesses. The national program that tracked food poisoning for three decades was reduced from tracking eight pathogens to only two. Included in this cut was cyclospora, the parasite responsible for the current surge of explosive diarrhea occurring in more than 40 states.

A cyclospora infection can range from mild to severe, and those with a weakened immune system are at greater risk. In August 2025, a review of research looking at the prevalence and associated risk factors of cyclospora in immunocompromised patients found that those with weakened immune systems are significantly more likely to be diagnosed with a cyclospora infection. The reviewers concluded that targeted screening and preventative measures for this high-risk group is warranted.

Healthy individuals usually present with self-limited diarrhea that resolves within weeks. But, the review noted, “Immunocompromised patients, however, often suffer chronic, relapsing or prolonged diarrhea, leading to malnutrition, dehydration and increased morbidity.” Immunocompromised patients typically require a more aggressive treatment plan to clear the parasite. Yet, last year the Trump administration removed the monitoring of this and other foodborne illnesses without the immunocompromised community in mind.

As a recent article in U.S. News & World Report suggests, the federal government may be learning that it’s hard to control what you choose not to observe. By halting the required monitoring of cyclospora cases, the CDC is now struggling to keep up with current outbreak data. Furthermore, the lack of quick and comprehensive cooperation between states makes finding the source of the food contamination much more difficult.

If infected with cyclospora, those of us in the immunocompromised community are considered to be at high risk of severe complications and potential hospitalization. But it’s not just fighting off the infection that poses a threat for someone who is immunosuppressed; the chronic diseases we live with daily often flare from infections. When my immune system works hard to fight a virus or bacteria, it also activates the very process that causes my multiple sclerosis symptoms. Often I’m left struggling to walk with dampened strength and energy.

When most of the world declared the pandemic over in 2022, the immunosuppressed community felt stranded, many of us unable to mount a strong response to the vaccine. As childhood immunization rates decline and measles cases grow, we are left with undetectable levels of protection. Removing the surveillance requirement for multiple foodborne illnesses is another hit, reminding us yet again that our lives are not valuable to the current administration.

Once again, we find ourselves treading in deep water without the luxury of being thrown a lifeline. It’s time our lives matter, too.

_____

Lindsay Karp is a freelance writer with a background in speech-language pathology. This column was produced for Progressive Perspectives, a project of The Progressive magazine, and distributed by Tribune News Service.

_____

©2026 Tribune Content Agency, LLC.