Mother Has Pushed for Expanded Genetic Screening Access
Yojana Rodriguez Humbert is advocating for improved genetic testing after the loss of her daughter to a rare condition.
Updated on Oct. 7, 2026 in Special Needs
After losing her daughter Kaya to a rare kidney condition, Yojana Rodriguez Humbert is lobbying on Capitol Hill for better access to genetic counseling and testing. The effort seeks to address systemic gaps that prevented her family from receiving critical medical information.
Why it matters
The advocacy highlights systemic challenges in the current genetic screening infrastructure that can leave parents unaware of potential rare disease risks for their children. By supporting new research and testing protocols, the initiative aims to prevent other families from facing similar diagnostic delays.
Kaya Humbert was the 43rd known case of SPLIS in the world and required 36 medications during her life. The gene associated with the condition was not identified until 2017, three years after her mother's initial screening.
The players
Yojana Rodriguez Humbert
She is the founder of Kaya Legacy and an advocate for improved genetic testing and counseling access.
Kaya Humbert
She was a child diagnosed with SPLIS who died at 14 months of age in 2025.
The details
Yojana Rodriguez Humbert founded the organization Kaya Legacy to pursue legislative support for rare kidney disease research following her daughter's 2025 death. Her efforts include work in Florida, which passed the Sunshine Genetics Act in 2025.
Timeline
Yojana Rodriguez Humbert underwent initial carrier screening in 2014.
The gene associated with SPLIS was identified in 2017.
Kaya Humbert was born in 2023.
Kaya Humbert passed away in 2025.
Culture Shift
The Sunshine Genetics Act serves as a model for the state-level legislative progress that Rodriguez Humbert is now advocating to expand at the federal level. This push reflects a broader societal movement toward more proactive genetic transparency in prenatal and reproductive health.
Families may face different levels of access to genetic testing based on their state of residence and individual insurance policies. Continued advocacy for national standards could eventually simplify the process for parents seeking comprehensive screenings.
The takeaway
Proactive communication with genetic counselors regarding the limitations of existing screening panels is essential for parents planning their families. Understanding that not all genetic conditions are covered by standard tests can help families make informed medical decisions.
Further reading
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