When Titus Chang was an infant, he was diagnosed with aplastic anemia, a life-threatening condition which stopped his body from producing enough blood cells.
According to his parents, Lee and Sandy Chang, the now 3-year-old bubbly little boy is "lucky to be alive" after he received an umbilical cord blood transplant provided by his younger brother.
"Titus has since fully recovered, and his success story underscores the potential to save other persons with life-threatening blood diseases," said state Senator Jackie Speier.
The Changs were on hand to support Speier's appearance at a news conference held on Monday, Oct. 30, 2006, at the UCSF National Center of Excellence in Women's Health (CoE).
Speier was also joined by Nancy Milliken, MD, vice dean of the UCSF School of Medicine and director of the CoE, along with representatives from the California Birth Defects Monitoring Program and Cord Blood Donor Foundation, to talk about Senate Bill 1555, a bill she introduced and that was signed into law by Governor Arnold Schwarzenegger in September. The law will take effect on January 1, 2007.
After 18 years in the state Legislature, Speier is leaving office at the end of this year, when her term expires. Senate Bill 1555 represents Speier's last bill to become a state law, one that she said was "vitally important" and "good news all around."
Senator Jackie Speier addresses attendees at a news conference to promote the California Maternal and Child Health Advancement Act.
SB 1555, the Maternal and Child Health Advancement Act, contains three important provisions. First, it creates a state public awareness program to inform Californians about the value of public and private cord blood banking. Second, it expands California's prenatal testing program to provide earlier and more accurate test results for pregnant women. And third, it updates the responsibilities of the California Birth Defects Monitoring Program to ensure the continuation of lifesaving discoveries about the causes of birth defects and prematurity.
"During her time in office, Senator Speier has been a strong advocate for health care reform," said Milliken. "This bill is a testament to her commitment to improving the lives of women and girls. We at the Center of Excellence are proud to host this news conference and raise awareness around legislation that will significantly impact the health of California families."
"This is a new maternal and child health law that is designed to save lives and prevent future birth defects," said Speier. "California's expectant families should have access to the latest technologies in prenatal care. California is years behind other states in providing the latest prenatal tests, and this bill pushes us back to the forefront."
A key provision in the bill updates and expands the state's prenatal screening program to current practice standards, including testing for a fourth substance, called inhibin A, in the mother's blood. Inhibin A is elevated in the blood serum of women carrying a fetus with Down syndrome.
This test will reduce the need for later testing, including invasive and costly tests such as amniocentesis. According to statistics cited in the bill, currently one out of 100 births is lost to the amniocentesis test.
In addition, by updating the current screening, the number of false positive results will be lowered, prematurity and mortality will be reduced, and at-risk pregnancies can be identified earlier - allowing, for example, families to gain time to make arrangements for delivery at hospitals with the appropriate level of care for babies with birth defects.
"Prenatal testing has really changed over the years," said Milliken. "In the past, we had a crude method of screening - primarily age. Now, less invasive blood tests can be used to screen regardless of age."
Twenty years ago, California was the first state to establish a prenatal screening program with the expanded alpha-fetoprotein (triple marker) screening test for pregnant women that measures maternal serum (blood) levels of three substances found in their bloodstream. According to the bill, in recent years, California has failed to adopt further scientific advances, so the existing prenatal screening program no longer meets the standard of care.
"California is now the 50th to add the latest prenatal tests which have been the standard of practice for pregnancy care for the last five years," said Speier.
Blood Cord Banking
SB 1555 will require that the Department of Health Services create a public awareness campaign, which would use private funding, about both public and private umbilical cord banking options in an effort to improve the lives of individuals with blood diseases.
Cord blood is the blood that remains in the umbilical cord and placenta following birth, and its young stem cells are the key building blocks in the blood and the immune system. Umbilical cord blood is perceived as one of the most viable options for treatment of more than 70 blood diseases, including leukemia, lymphoma and sickle cell anemia.
Currently, only 3 percent of the blood is collected nationwide. Yet, according to the National Marrow Donor Program, umbilical cord blood transplants have grown from 1 percent to 20 percent of all unrelated marrow transplants since 1988.
"Of the more than half-million births in the state of California, more than 90 percent of the stem cells from cord blood get discarded as medical waste," said Tom Moore, chief executive officer of Cord Blood Registry. "From a public health perspective and that of individuals suffering with illnesses that could be treated with cord blood stem cells, this is a tragedy - and a situation we must change."
Gloria Ochoa, president of the Cord Blood Donor Foundation, announced that they have contributed the first $50,000 to help fund the Umbilical Cord Blood Community Awareness Campaign.
"We are calling on other corporations to donate to this important account," she said.
Birth Defects and Prematurity
Every year in California, 17,000 children are born with birth defects, the leading cause of infant death and childhood disability.
"When a child is born, every parent expects a good outcome," said Jon Harris, MD, MPH, whom Speier asked to speak on behalf of the California Birth Defects Monitoring Program (CBDMP). "Now, imagine when your doctor has to tell you that there's a problem. Surprisingly, the rates of prematurity and birth defects are the same in 1966 as in 2006. Continued research is critical."
According to the CBDMP data, children with birth defects and prematurity cost the state of California and the private sector billions of dollars per year in medical treatment and special education costs. As a result of research about folic acid preventing spina bifida and about tobacco causing cleft lip and palate, the CBDMP has already saved at least $78.5 million per year.
The bill mandates that funding of the California Birth Defects Monitoring Program be stabilized, so that it can continue in its mission of research.
Part of the program is the storage of pregnancy blood samples acquired for prenatal screening, which can be used for research purposes with individual consent.
"Our state's ability to directly measure genetic, nutritional, infectious, chemical and lifestyle risk factors among large populations puts California into a scientific leadership position," said Speier. "As causes are identified, there will be increased state cost savings, and families will have new information necessary to make better health decisions during pregnancy."
National Center of Excellence in Women's Health
Legislator Hailed as Champion for Women's Health
UCSF Daybreak News
, December 13, 2000