Advocate Has Pushed for Expanded Genetic Testing Access
A mother is lobbying for policy changes after her daughter’s rare kidney disease diagnosis.
Updated on Oct. 7, 2026 in Special Needs
Yojana Rodriguez Humbert is advocating on Capitol Hill for improved access to genetic counseling and testing. Her efforts follow the death of her daughter, Kaya Humbert, who was diagnosed with a rare condition called SPLIS.
Why it matters
The advocate believes systemic gaps in genetic testing limited her family’s ability to receive critical health information. Her push for reform aims to ensure other parents have access to more comprehensive screening tools.
Kaya Humbert was the 43rd known global case of SPLIS, a rare condition linked to a gene identified in 2017. Her case history highlights the diagnostic challenges faced by families with rare genetic disorders.
The players
Yojana Rodriguez Humbert
An advocate and founder of the organization Kaya Legacy who is lobbying for genetic testing reform.
Kaya Humbert
A child diagnosed as the 43rd known case of SPLIS who passed away at 14 months old.
The details
SPLIS is a rare condition associated with a specific gene identified in 2017. For Kaya Humbert, the disease progressed rapidly, leading to end-stage kidney disease by 6 months of age and requiring a complex regimen of 36 different medications.
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.
Florida passed the Sunshine Genetics Act in 2025.
Health Landscape
The push for legislative change follows the passage of the Sunshine Genetics Act in Florida, which represents a shift toward state-mandated genetic health support. This advocacy reflects a broader movement to bridge gaps between existing genetic screening and clinical diagnosis.
If you are considering family planning, speak with your physician about the current limitations and scope of standard carrier screening panels. It is worth discussing with your doctor whether specialized genetic testing is appropriate based on your personal and family medical history.
The takeaway
Genetic screening is a rapidly evolving field that often leaves gaps between known conditions and standard testing panels. If you have concerns about genetic risks, ask your primary care physician for a referral to a board-certified genetic counselor to discuss your specific screening options.
Further reading
For more information on navigating diagnostic journeys, visit the Special Needs section.
Source note: This article includes information reported by NBC 6 South Florida.
