Would require the State Department of Health Care Services, in consultation with the State Department of Public Health, to establish and conduct a public education program to inform pregnant women and women who may become pregnant about cytomegalovirus (CMV) using information about specified items, including birth defects caused by congenital CMV and available preventive measures to avoid CMV infection of those women. The bill would require the State Department of Health Care Services to make that information available on its Internet Web site and to provide the information to specified entities and individuals.
AAP Positional Letter
April 11, 2018
Assemblymember Adrin Nazarian
P.O. Box 942849
Sacramento, CA 94249-0046
RE: AB 1801 (Nazarian) –Newborns: cytomegalovirus public education and testing
AAP-CA Position: Oppose, Unless Amended (April 3, 2018 amended version as proposed by the author)
Dear Assemblymember Nazarian,
The American Academy of Pediatrics, California (AAP-CA), representing over 5,000 California pediatricians, respectfully Opposes, Unless Amended, your proposed legislation AB 1801, amended as proposed by your office April 3, 2018.
California pediatricians agree that more needs to be done to identify and monitor infants infected with cytomegalovirus (CMV) who have acquired the infection during pregnancy congenitally from their mothers. However, the existing evidence does not support either universal CMV screening or targeted screening of newborns for CMV; available data are not adequate to demonstrate that the benefit of such screening would outweigh unintended consequences or risk. As such, AAP-CA opposed the universal newborn CMV screen mandate in AB 1801, as introduced, as premature. We appreciate that you have removed that mandate in the proposed April 3, 2018 amendments that you shared. We also greatly appreciate that those amendments pursue the recommendation that we made in our March 7th letter to establish a group to report to the legislature and to develop a focused, actionable plan to improve CMV identification, monitoring and treatment.
That said, we have significant concerns with the charge of the commission as it is conceptualized in the proposed amendments of April 3, 2018. In particular, the amended bill as proposed appears to presuppose what the outcomes of the dialogue among commission members will be, i.e., that the commission will call for legislation, and that such legislation will relate to “the most effective public educational resources to for pregnant women”, as well as the best ways to “identify children born with CMV.” Specifically, section 124123.1. (b) states, “It is the intent of the Legislature that the reports submitted pursuant to this article be used to inform legislation…” Further, Section 124123.2. (a) states, “ The commission shall submit a report… that includes its findings and recommendations, including recommendations for legislation, for presentation to the appropriate policy committees.”
Our intent in suggesting the establishment of a group of experts and stakeholders under the auspices of one or more state agencies was that those with differing views would review relevant data, evidence and best practices, and work collaboratively to assess what, if any change, to current practices could improve identification, monitoring and treatment for children who experience the very significant negative negative health outcomes that can occur due to the CMV virus.
In order for this to be a productive and positive conversation that leads to improvements in care and outcomes for these children and their families, it is critically important that this be an evidence-based, open process.
It is entirely possible that the commission would determine some type of legislation relative to CMV is needed. However, it is also possible that they might make recommendations that do not require any legislative action/statutory change, including, for example, the need for additional data, which might occur through public or private funding sources, and/or the need for voluntary professional association/private sector educational activities. It may be that the evidence and best practices reviewed by the commission yield recommendations that are not legislative in nature. The language in these current amendments does not allow for that possibility.
We applaud you for bringing the issue of the need to better identify, monitor, and, where possible treat, newborns and children with the CMV virus. Your leadership and dedication has led to the American Academy of Pediatrics, California engaging in extended and meaningful discussions in this area. It has also resulted in a commitment on our part to partner with others in an evidence-based, open commission process, if one is established.
We look forward to continued discussions with you and your staff.
Pediatricians across the state thank you for your public service and leadership on behalf of the health and wellbeing of children, youth, and families in California.
Chief Executive Officer
American Academy of Pediatrics, California
Cc: Assembly Health Committee, Mona Patel, MD, AAP-CA Leadership, Lydia Bourne