If you're in the US and considering participating in a clinical trial to explore new treatments, reduce your steroid dose, or find alternatives to manage your illness, you might worry about taking time off work. Here's what you should know: in late 2024, the US Department of Labor confirmed that clinical trial participation qualifies for Family and Medical Leave Act (FMLA) protection. You can take up to 12 weeks of unpaid, job-protected leave for research studies, just like any other medical treatment.
What's protected
FMLA removes a major barrier that's kept many people from trying potentially life-saving treatments. Your employer cannot penalize you for taking time to participate in a clinical trial, whether you're testing an investigational drug, undergoing experimental procedures, or even receiving a placebo. Take time off for study visits, treatments, and recovery without fear of losing your job or health insurance. Attend appointments at specialized research centers, even if they require travel or full-day visits.
Your employer can ask for medical certification of your serious health condition, but they cannot demand specific trial details. You don't have to reveal whether you're receiving the experimental drug or a placebo. Family members are protected too – parents, spouses, or adult children accompanying loved ones to trial appointments can all use FMLA leave.
How this change happened
This didn't happen by accident. The Foundation for Sarcoidosis Research (FSR) spent years pushing for this change after its research showed that fear of job loss was keeping many patients, especially those in underserved communities, from enrolling in clinical trials. They formed a coalition of 27 organizations and made more than 40 visits to Capitol Hill to educate lawmakers.
As FSR's CEO Mary McGowan said, "[this clarification] will have a tremendous impact at the national level on clinical trial enrollment and participation for all diseases." The message was clear: no one should have to choose between keeping their job and seeking a potentially life-saving experimental therapy.
What you need to qualify
You'll need to meet standard FMLA requirements: your employer has at least 50 employees, you've worked there for more than 12 months, and you've worked at least 1,250 hours during that time. If you work for a smaller company, check with your state's labor department about state family leave laws that might protect you.
While FMLA protects your job, the leave is unpaid. Some companies are going further through an initiative called "Champions for Change," offering paid days off for clinical trial participation. If taking unpaid leave would create financial hardship, ask your HR department about paid medical leave options.
What you can do
If you're considering joining a clinical trial, talk with your healthcare provider about options and ask the trial coordinator about time commitments. Then, speak with your employer's HR department about FMLA leave and let them know the Department of Labor has confirmed this protection.
Most importantly, don't let fear of job loss keep you from exploring treatments that might help you. Whether you're trying to manage steroid side effects, reduce your dose, or find alternatives to corticosteroids, clinical trials can offer hope. Now you can pursue that hope without risking your livelihood.
Track your treatment journey with Sam's Journey Tracker. It can help you document your steroid journey.
Remember, always consult your doctor before making any changes to your medication or lifestyle to ensure the best care for your specific health needs.