[Congressional Record (Bound Edition), Volume 157 (2011), Part 6]
[Extensions of Remarks]
[Pages 8364-8365]
[From the U.S. Government Publishing Office, www.gpo.gov]




 THE INTRODUCTION OF THE BIRTH DEFECTS PREVENTION, RISK REDUCTION, AND 
                         AWARENESS ACT OF 2011

                                 ______
                                 

                          HON. ROSA L. DeLAURO

                             of connecticut

                    in the house of representatives

                         Thursday, May 26, 2011

  Ms. DeLAURO. Mr. Speaker, I rise today to introduce the Birth Defects 
Prevention, Risk Reduction, and Awareness Act of 2011, which will help 
provide accurate, evidence-based information to pregnant and breast-
feeding women about medications, chemical exposures, foodborne illness, 
and other exposures associated with birth defects or health risks to a 
breastfed infant.
  This bill would establish a grant program to revitalize the national 
network of pregnancy risk information services, more than half of which 
have closed over the last decade due to lack of funding. Over 70,000 
women seek information from these essential services each year. It 
would also establish a national information campaign to help increase 
public awareness among health providers and at-risk populations.
  The legislation has been endorsed by the Allergy and Asthma Network, 
American Academy of Allergy, Asthma, and Immunology, American Academy 
of Pediatrics, American Congress of Obstetricians and Gynecologists, 
March of Dimes Foundation, Mothers of Asthmatics, Organization of 
Teratology Information Specialists, Spina Bifida Association, and the 
Zero to Three National Center for Infants, Toddlers, and Families. I 
hereby submit for the record letters of support from these 
organizations.
  There is nothing more important than protecting our children, and 
this legislation will help expectant and breast-feeding mothers to 
obtain clear, accurate information about the potential risks of 
medications, illnesses, and other exposures during pregnancy and 
breastfeeding, helping them to both avoid risks and improve healthy 
behaviors like taking folic acid. This legislation will help mothers 
and health care professionals access critical information to help 
ensure their babies are healthy, and I urge my colleagues to support 
our efforts.

                                      American Academy of Allergy,


                                         Asthma, & Immunology,

                                                   Washington, DC,
                                                   April 11, 2011.
     Hon. Rosa DeLauro,
     House of Representatives,
     Washington, DC.
       Dear Ms. DeLauro: On behalf of the American Academy of 
     Allergy, Asthma, and Immunology, I write to express strong 
     support for the Birth Defects Prevention, Risk Reduction, and 
     Awareness Act. This legislation will fund the national 
     network of pregnancy risk information services that are 
     currently severely underfunded. These services counsel 
     pregnant and breast-feeding women on exposures to 
     medications, chemicals, infections, and other risks to 
     healthy pregnancy and healthy infants.
       A pregnant or breast-feeding woman lives in fear of any 
     exposure that might pose a risk to her pregnancy or her baby. 
     This is because of the paucity of information on the impact 
     of exposures to medications, chemicals, infections and 
     illnesses during pregnancy and nursing. Some exposures can be 
     avoided, but for women with chronic diseases such as asthma, 
     epilepsy, hypertension, or depression, continued use of 
     medication may be essential to the health of both the woman 
     and her infant. Asthma affects about 8% of pregnant women--
     over 300,000 women per year. Some women simply discontinue 
     their asthma medications during pregnancy out of fear of a 
     potential birth defect. However, uncontrolled asthma may pose 
     a greater risk of complicating the pregnancy. Our 
     organization has initiated a major study of asthma drugs in 
     pregnancy in collaboration with the nation's pregnancy risk 
     information services. This study simply could not be done 
     without the resources available through these services. 
     Unfortunately, more than half of the pregnancy risk 
     information services in the country have closed over the past 
     decade, and those that remain have sustained severe funding 
     cuts. The legislation you are introducing will increase 
     support for these important programs and assure that the 
     vitally important counseling and research services they 
     provide can be reinvigorated.
       The American Academy of Allergy, Asthma, and Immunology is 
     the largest professional medical specialty organization in 
     the United States representing allergists, asthma 
     specialists, clinical immunologists, allied health 
     professionals, and others dedicated to improving the 
     treatment of allergic diseases through research and 
     education. We thank you for your leadership in support of 
     prevention and research related to birth defects and are 
     pleased to offer the Academy's support for your legislation.
           Sincerely,

                                      Dennis K. Ledford, M.D.,

                                    President, American Academy of
     Allergy, Asthma, and Immunology.
                                  ____



                                     Spina Bifida Association,

                                      Washington, DC, May 5, 2011.
     Hon. Rosa DeLauro,
     House of Representatives, Rayburn House Office Building, 
         Washington, DC.
       Dear Representative DeLauro: On behalf of the Spina Bifida 
     Association (SBA), the only national voluntary health 
     organization working on behalf of the estimated 166,000 
     individuals who live with all forms of Spina Bifida and their 
     families, I am writing to express our support to you and the 
     Birth Defects Prevention, Risk Reduction and Awareness Act. 
     This legislation will provide much-needed support to 
     pregnancy risk information services, which play a crucial 
     role in educating women on how to reduce the risk of 
     preventable birth defects, including Spina Bifida.
       One of the primary goals of SBA is to increase awareness of 
     the importance of folic acid consumption among the 65 million 
     women in the United States of child-bearing age. The risk of 
     Spina Bifida and other serious birth defects can be reduced 
     by up to 70%, if women of childbearing age consume 400 
     micrograms (400 mcg) of folic acid (a B-vitamin) every day. 
     Grants funded under the Birth Defects Prevention, Risk 
     Reduction and Awareness Act will help ensure that women who 
     are considering becoming pregnant have access to information 
     on the importance of folic acid supplementation, as well as 
     other key steps they can take to ensure a healthy pregnancy.
       SBA thanks you for recognizing the importance of pregnancy 
     risk information services. If we can be of any assistance, 
     please feel free to contact me at 202-944-3285, Ext. 14.
           Sincerely,

                                             Cindy Brownstein,

                                     President and Chief Executive
     Officer, Spina Bifida Association.
                                  ____



                               American Academy of Pediatrics,

                                                   April 20, 2011.
     Hon. Rosa DeLauro,
     Rayburn House Office Building,
     Washington, DC.
       Dear Representative DeLauro: on behalf the American Academy 
     of Pediatrics (AAP), a non-profit professional organization 
     of 60,000 primary care pediatricians, pediatric medical 
     subspecialists, and pediatric surgical specialists dedicated 
     to the health, safety, and well-being of infants, children, 
     adolescents, and young adults, I would like to share our 
     support for the Birth Defects Prevention, Risk Reduction, and 
     Awareness Act.
       Each year, about one in every 33 babies in our nation is 
     born with a birth defect. Birth defects can be caused by 
     genetic factors, environmental exposures, or a combination of 
     the two. For the vast majority of birth defects, however, the 
     cause remains unknown. Research continues to reveal important 
     new information about the causes and prevention of birth 
     defects.
       The Birth Defects Prevention, Risk Reduction, and Awareness 
     Act seeks to provide a resource for pregnant women who have 
     questions about whether certain medications, infections, or 
     chemical or environmental exposures might cause or increase 
     the risk of a birth defect, or pose a risk to a breastfeeding 
     baby. This bill would support the provision of pregnancy and 
     breastfeeding information services to women and health care 
     providers seeking information about known or suspected risks. 
     Breastfeeding mothers will receive information about how 
     potential risks should be weighed against the significant 
     benefits of breastfeeding. These services will address an 
     important need as our understanding of birth defects and 
     their prevention continues to evolve.
       The AAP appreciates your commitment to preventing birth 
     defects and educating the public about potential risks. We 
     are pleased to support the Birth Defects Prevention, Risk 
     Reduction, and Awareness Act, and we look forward to 
     continuing to work with you to improve the health of all our 
     nation's children.
           Sincerely,
                                        O. Marion Burton, MD FAAP,
     President.
                                  ____

                                                             OTIS,
                                                   April 13, 2011.
     Hon. Rosa DeLauro,
     House of Representatives,
     Washington, DC.
       Dear Ms. DeLauro: on behalf of the Organization of 
     Teratology Information Specialists, I write to express strong 
     support for the Birth Defects Prevention, Risk Reduction, and 
     Awareness Act. Our organization is made up of physicians, 
     genetic counselors, nurses, researchers, and educators 
     interested in the study and prevention of birth defects, and 
     we fully support the goals of your legislation.
       Many of our members work in pregnancy risk information 
     services across the country. These programs provide accurate 
     evidence-based, clinical information to patients and health 
     care professionals about exposures during pregnancy or 
     breast-feeding to medications, chemicals, infections, and 
     illnesses

[[Page 8365]]

     and whether there is a risk of birth defects or harm to an 
     infant. Pregnant or breast-feeding women with chronic 
     diseases, such as asthma, epilepsy, diabetes, or depression 
     are counseled by these services about how to properly treat 
     their disease and minimize the risk of birth defects. 
     Pregnancy risk information services provided invaluable 
     assistance to women and providers during the H1N1 
     immunization effort as both pregnant women and providers 
     sought information as to whether the vaccine was safe during 
     pregnancy.
       At one time, there were over 30 such services in the United 
     States. Cuts in state budgets have forced more than half of 
     these to close, and the remaining 13 services are operating 
     under significantly reduced budgets. Decreases in staffing, 
     hours of operation, and community outreach efforts have 
     compromised patient and health care provider access to 
     information needed to assure healthy pregnancy and risk-free 
     breastfeeding. The bill you are introducing would reverse 
     this trend. As an organization committed to the prevention of 
     birth defects, we wholeheartedly endorse your legislation and 
     thank you for your leadership.
           Sincerely,
                                          Lori Wolf, M.S., C.G.C.,
     President.
                                  ____

                                          The American Congress of


                              Obstetricians and Gynecologists,

                                     Syracuse, NY, April 15, 2011.
     Hon. Rosa DeLauro,
     Rayburn House Office Building,
     Washington, DC.
       Dear Congresswoman DeLauro, on behalf of the American 
     Congress of Obstetricians and Gynecologists (ACOG), 
     representing 54,000 physicians and partners in women's 
     health, thank you for introducing the Birth Defects, 
     Prevention, Risk Reduction, and Awareness Act of 2011. Your 
     bill will strengthen much-needed research on birth defects 
     and breast-feeding, and help educate women on ways to reduce 
     risks to their babies and have healthy pregnancies.
       There is an alarming gap in research on exposures to 
     chemicals, medicines, and everyday behaviors and their link 
     to birth defects, both during pregnancy and breast-feeding. 
     This bill takes important steps to address the gaps, calling 
     for research on maternal exposures that may adversely affect 
     a pregnancy or cause harm to a breast-feeding infant. Equally 
     as important, providing information to women and taking steps 
     to increase awareness about pregnancy and breast-feeding will 
     help ensure women have the information they need to make 
     healthy choices during pregnancy and afterwards.
       Again, thank you for introducing this bill to help pregnant 
     and breast-feeding women. We look forward to working with you 
     on this important legislation. Please do not hesitate to 
     contact ACOG's Department of Government Affairs if we can be 
     of assistance in any way.
           Sincerely,
                                    Richard N. Waldman, MD, FACOG,
     President.
                                  ____



                                    March of Dimes Foundation,

                                   Washington, DC, April 11, 2011.
     Hon. Rosa DeLauro,
     Rayburn House Office Building,
     Washington, DC.
       Dear Representative DeLauro: on behalf of more than 3 
     million volunteers and 1,200 staff of the March of Dimes 
     Foundation, I am writing to express support for the ``Birth 
     Defects Prevention, Risk Reduction and Awareness Act of 
     2011.'' As currently drafted, this bill authorizes funding to 
     conduct a national media campaign, enhance surveillance and 
     research on exposures that may lead to adverse birth outcomes 
     such as birth defects or prematurity. It also authorizes 
     funding to develop best practice guidelines to improve infant 
     health.
       Each year, an estimated 120,000 infants are born with major 
     structural birth defects. One in five infant deaths is due to 
     birth defects, making them the leading cause of infant 
     mortality and a major cause of childhood and adult 
     disability. It is critically important that the public--
     especially women of childbearing age--and health care 
     professionals have access to clinical and evidence based 
     information about potential risks of medications, illnesses, 
     and other exposures during pregnancy and breast-feeding.
       Readily accessible and accurate information holds the 
     potential to decrease the incidence of birth defects and 
     improve infant health. Unfortunately, studies show that up to 
     half of pregnant women are not counseled by their health care 
     providers about the potential teratogenic effects of 
     prescription drugs that they are taking.
       Thank you for your leadership on this very important issue, 
     Senator Hagan, we look forward to working with you on this 
     and other issues central to the health and wellbeing of 
     children in communities across the nation and around the 
     world.
           Sincerely,

                                          Dr. Marina L. Weiss,

                              Senior Vice President, Public Policy
     and Government Affairs.
                                  ____

         ZERO TO THREE,'
                                     Washington, DC, May 20, 2011.
     Hon. Rosa DeLauro,
     2413 Rayburn House Office Building,
     Washington, DC.
       Dear Representative DeLauro: on behalf of ZERO TO THREE: 
     National Center on Infants, Toddlers, and Families, I am 
     writing to express our support for the Birth Defects 
     Prevention, Risk Reduction, and Awareness Act. ZERO TO THREE 
     is a national nonprofit organization whose mission is to 
     promote the health and development of our nation's youngest 
     children. We translate scientific research and knowledge 
     about the unique needs of infants and toddlers for parents, 
     early childhood practitioners, and policymakers.
       In the United States, approximately one in every eight 
     babies is born preterm; one in every 12 is born with low 
     birth weight; and one in every 33 is born with a birth 
     defect. Exposure to environmental toxins while in the womb 
     contributes to all three of these statistics. Babies' 
     development is particularly vulnerable during the prenatal 
     period, when cells are rapidly differentiating, organs are 
     forming, and the brain is undergoing a crucial phase of 
     maturation. Environmental toxins are hazardous to these 
     processes, especially because of the underdevelopment of 
     fetal immune systems.
       Prenatal and early exposures yield grave results. Birth 
     defects are the leading cause of infant mortality, and babies 
     born preterm are more than 15 times as likely to die in their 
     first year of life. Low birth weight babies are more likely 
     to require neonatal intensive care for problems like 
     respiratory distress, bleeding in the brain, and dangerous 
     heart and intestinal problems. Later in life, babies exposed 
     to environmental toxins are more likely to develop childhood 
     cancer, asthma and obesity, and infertility. Their exposure 
     places them at heightened risk for an array of physical and 
     developmental disorders that diminish their capacity for 
     healthy development, school success, and productive 
     contribution to society and the workforce. In addition, 
     treatment of diseases and disorders caused by exposure raises 
     health care costs.
       This Act takes an important step towards decreasing early 
     exposure to environmental toxins by establishing a federal 
     grant program to fund Pregnancy Risk Information Services 
     (PRIS) throughout the country. PR1S provide pregnant and 
     breastfeeding women and their physicians with evidence-based 
     information about exposure to medications, chemicals, illicit 
     drugs, alcohol, infections, and illnesses that may pose a 
     risk to the healthy development of a fetus or breastfeeding 
     baby. They also fill critical knowledge gaps by recruiting 
     women for surveillance and research projects that study the 
     effects of toxins on babies' development. Mothers are hungry 
     for medically-grounded advice to guide their actions while 
     pregnant and breastfeeding. This bill would provide them with 
     access to the information they need to make healthy, 
     responsible choices for their children.
       On behalf of ZERO TO THREE and the four million babies born 
     each year in the United States, thank you for your steadfast 
     work to defend children's health and development. We are 
     pleased to support the Birth Defects Prevention, Risk 
     Reduction, and Awareness Act and look forward to continuing 
     to work together to improve the lives of infants and 
     toddlers.
           Sincerely,
                                            Matthew E. Melmed, JD,
     Executive Director.

                          ____________________