Legislative Advocacy

Legislative-Advocacy-Pic-225x300Although Peace, Love and Trevor’s primary purpose is to help families affected by Krabbe disease we do support legislation for newborn screening of lysosomal storage diseases (LSDs). Newborn screening of Krabbe disease, allows for the early detection and treatment utilizing the latest in stem cell transplantation therapy. With Krabbe disease, once a child first shows outward signs or symptoms, the child is often not considered a good candidate for transplantation therapy. The life expectancy of an untreated child is 2-3 years of age.

In 2006, New York became the first state to test all newborns for Krabbe disease though a state run newborn screening program. New York was the first and is still the only state currently testing for any lysosomal storage disorders.

In the past 4 years, several other states have passed legislation to begin LSD testing in the next few years. Some are initiating pilot studies in preparation for future testing. These states currently include: Illinois, Missouri, New Mexico and New Jersey.

Peace, Love and Trevor is a strong supporter of universal newborn screening for lysosomal storage diseases including Krabbe. The sad reality for our son Trevor is that had he been born in the state of New York – he could have been identified through their newborn screening program, undergone stem cell transplantation therapy, and had a dramatic increase in both the length and quality of his life.

California Senate Bill 1072

California has one of the most robust newborn screening programs in the United States. Currently testing for 77 diseases it leads the nation. With over 500,000 babies born in California each year, there is an enormous opportunity to save many children’s lives from several devastating but treatable lysosomal storage diseases including Krabbe. With advances in testing technologies, it is now possible to test for up to 9 lysosomal storage diseases simultaneously utilizing a single multiplex assay or test. This provides an enormous cost advantage in assessing the fiscal impact of expanding California’s newborn screening program.

In 2012, Senate Bill 1072 was authored by Senator Tony Strickland of the 19th Senate District in California. The lead organization supporting the bill is the Hunter’s Hope Foundation. The initial bill language included 6 lysosomal storage diseases, but was amended prior to the first Senate Health committee to include only MPS 1 (Hurler’s Syndrome) and Krabbe disease. Budgetary constraints are the reason the bill’s scope was narrowed. Although, disappointed by the narrowing of the bill language, PLT was pleased that the bill passed the Health Committee with a vote of 7-0.

On May 24th 2012, the California Senate Appropriations Suspense Committee meeting was held to address any current legislation with an estimated fiscal impact to California’s budget exceeding $150,000. SB 1072 had a fiscal note attached to it of approximately $7,000,000. Due to the enormous California budget deficit that was recently deemed to be a fiscal crisis, SB 1072 (Jacqueline’s Bill) was voted to be “Held in Committee” at the suspense hearing. This effectively means that the legislation is stalled and will not be successful during the 2012 legislative cycle.

Peace, Love and Trevor is very disappointed with this outcome. The current reality is that children will continue to be born and die from Krabbe and five other treatable lysosomal storage diseases included in the SB 1072 bill language, due to the poorly managed California budget. Advocacy groups will likely initiate new newborn screening legislation in 2013.

To view the actual amended SB 1072 language click here.

To view a press release from Senator Strickland’s office with respect to SB 1072 click here.