California State Legislature approves genome sequencing program to diagnose diseases
Carlos Amezcua and Lauren Phinney met with assemblymember Brian Maienschein to talk about how genome sequencing can be used to diagnose diseases.
The California State Legislature approved a budget including $2 million for a pilot project that would examine and demonstrate the benefits of utilizing clinical Whole Genome Sequencing in Medi-Cal (cWGS). Requested and strongly supported by Brian Maienschein (R-San Diego) and Rob Bonta (D-Oakland), co-chairs of the California Legislative Rare Disease Caucus, the project aims to prove that using cWGS will help in the treatment of people with undiagnosed illnesses under the care of Medi-Cal, while decreasing the cost associated with the program.
“For years, a large number of California patients have dealt with expensive diagnostic odysseys and ineffective treatments.” said Maienschein. “By funding this project and demonstrating the positive outcomes for both patient and program from utilizing clinical Whole Genome Sequencing, California can remain a leader in precision medicine and its related technologies.”
When the Affordable Care Act was enacted, there was a subsequently large increase in enrollment for the state’s Medicaid program, Medi-Cal. Of the over 6 million Medi-Cal enrollees ages 0 to 18, it is projected that there may be as many as 150,000 who have rare, undiagnosed, genetic diseases.
The pilot project will serve a minimum of 100 Medi-Cal neonatal and pediatric patients with undiagnosed diseases that have either remained undiagnosed, or had multiple incorrect diagnoses. These patients will be tested using cWGS as a first line diagnostic test. Regular reports to the Legislature and the state Department of Health Services will be required to provide tight oversight on the project’s progress and patient treatment adjustments. The goal of this proof of concept project is to demonstrate both the clinical benefits for Medi-Cal patients and financial benefits for the program as a whole.
Assemblymember Brian Maienschein, of San Diego, represents the 77th Assembly District in the California Legislature, which includes the communities of 4S Ranch, Carmel Mountain Ranch, Carmel Valley, Clairemont, Del Dios, Del Mar Heights, Fairbanks Ranch, Kearny Mesa, Mira Mesa, Poway, Rancho Bernardo, Rancho Penasquitos, Rancho Santa Fe, Sabre Springs, San Carlos, San Pasqual Valley, Scripps Ranch, Sorrento Valley, and Tierrasanta.