The impact of insurance coverage on the prenatal genetic counseling process: An exploration of genetic counselors' experiences with TRICARE.

The prenatal genetic counseling process may be influenced by the patient's insurance coverage for both prenatal testing and termination. Major commercial insurance providers have different policies. TRICARE is the United States Department of Defense health program for uniformed service members. TRICARE provides coverage to approximately 9.4 million beneficiaries, including health plans, special programs, prescriptions, and dental plans. TRICARE's covered medical expenses are outlined in their policies, including those pertaining to genetic testing and termination. This qualitative study aimed to explore the extent to which insurance coverage of prenatal genetic testing and termination of pregnancy affect the genetic counseling process by exploring genetic counselors' experience with TRICARE. The majority of counselors stated that they did not change their overall counseling process for TRICARE patients. However, several counselors expressed that they changed the way they discussed cost with TRICARE patients, specifically in regard to genetic testing. Additionally, counselors provided their perceptions of their patients' emotional experiences. With the recent consolidation of the three TRICARE regions into two TRICARE Regional Office (TRO) regions and the renewal of the Laboratory Developed Tests Demonstration Project, the findings of this study are valuable in the evaluation of TRICARE's coverage of prenatal genetic services.

Twenty-Week Abortion Bans on Pregnancies With a Congenital Diaphragmatic Hernia: A Cost-Effectiveness Analysis.

OBJECTIVE: To estimate the effect of 20-week abortion bans on maternal and consequent neonatal health outcomes and costs in the setting of fetal congenital diaphragmatic hernia. METHODS: A decision-analytic model was built using TreeAge software to evaluate the effect of a 20-week ban on abortion in a theoretical cohort of 921 women diagnosed with fetal congenital diaphragmatic hernia. Probabilities, utilities, and costs were derived from the literature. The cohort size was based on the annual rate of prenatal diagnoses of congenital diaphragmatic hernia and live births among the 20 states with bans. The threshold for cost-effectiveness was set at $100,000 per quality-adjusted life-year. Analysis was completed from the maternal perspective. Clinical outcomes included mode of delivery, maternal death, intrauterine fetal death, neonatal death, neurodevelopmental disability, and use of extracorporeal membrane oxygenation. One-way sensitivity analysis was used on all variables and Monte Carlo simulation was performed. RESULTS: A policy restricting termination was associated with higher costs, at an additional $158,419,623, with decreased quality of life and 674 fewer quality-adjusted life-years. With 20-week bans in place, 60 women would travel out of state to obtain abortions. There would be 158 more live births affected by congenital diaphragmatic hernia. Of these births, 45 neonates would die before 28 days after birth and an additional 37 would have long-term neurodevelopmental disability. CONCLUSION: In this model, bans that limit abortions beyond 20 weeks of gestation were associated with worse health outcomes and increased costs for women with pregnancies complicated by congenital diaphragmatic hernia. The restriction of health care access should be considered in terms of the long-term outcomes and economic effect on individuals and society.

Medicaid pregnancy termination funding and racial disparities in congenital anomaly-related infant deaths.

OBJECTIVE: To explore whether state restrictions on Medicaid funding for pregnancy termination of anomalous fetuses could be contributing to the black-white disparity in infant death resulting from congenital anomalies. METHODS: Data on deaths resulting from anomalies were obtained from U.S. vital statistics records (1983-2004) and the Nationwide Inpatient Sample (2003-2007). We conducted an ecological study using Poisson and logistic regression to explore the association between state Medicaid funding for pregnancy terminations of anomalous fetuses and infant death resulting from anomalies by calendar time, race, and individual Medicaid status. RESULTS: Since 1983, a gap in anomaly-related infant death has developed between states without compared with those with Medicaid funding for pregnancy termination (rate ratio in 2004 1.21, 95% confidence interval [CI] 1.18-1.24; crude risks: 146.8 compared with 121.7/100,000). Blacks were significantly more likely than whites to be on Medicaid (60.2% compared with 29.2%) and to live in a state without Medicaid funding for pregnancy termination (65.8% compared with 59.6%). The increased risk of anomaly-related death associated with lack of state Medicaid funding for pregnancy termination was most pronounced among black women on Medicaid (relative risk 1.94, 95% CI 1.52-2.36; crude risks: 245.5 compared with 129.3/100,000). CONCLUSION: States without Medicaid funding for pregnancy termination of anomalous fetuses have higher rates of infant death resulting from anomalies than those with funding, and this difference is most pronounced among black women on Medicaid. Restrictions on Medicaid funding for termination of anomalous fetuses potentially could be contributing to the black-white disparity in anomaly-related infant death. LEVEL OF EVIDENCE: II.

Prenatal screening: an ethical agenda for the near future.

Prenatal screening for foetal abnormalities such as Down's syndrome differs from other forms of population screening in that the usual aim of achieving health gains through treatment or prevention does not seem to apply. This type of screening leads to no other options but the choice between continuing or terminating the pregnancy and can only be morally justified if its aim is to provide meaningful options for reproductive choice to pregnant women and their partners. However, this aim should not be understood as maximizing reproductive choice per se. Only if understood as allowing prospective parents to avoid suffering related to living with (a child with) serious disorders and handicaps can prenatal screening be a publicly or collectively funded programme. The alternative of moving prenatal testing outside the healthcare system into the private sector is problematic, as it makes these tests accessible only to those who can afford to pay for it. New developments in prenatal screening will have to be assessed in terms of whether and to what extent they either contribute to or undermine the stated aim of providing meaningful options for reproductive choice. In the light of this criterion, this article discusses the introduction of the new non-invasive prenatal test (NIPT), the tendency to widen the scope of follow-up testing, as well as the possible future scenarios of genome-wide screening and 'prenatal personalised medicine'. The article ends with recommendations for further debate, research and analysis.

Length of life and treatment intensity in infants diagnosed prenatally or postnatally with congenital anomalies considered to be lethal.

OBJECTIVES: The objectives of this study were (1) to compare age at death and the intensity and cost of medical treatment for infants diagnosed prenatally or postnatally with congenital anomalies considered to be lethal. (2) To determine whether greater treatment intensity is associated with longer life. STUDY DESIGN: This is a retrospective cohort study of all fetuses and neonates with congenital anomalies classified as lethal who were diagnosed or treated at the University of North Carolina Hospitals from January 1998 to December 2003. RESULT: The cohort consisted of 192 fetuses and infants: 160 were diagnosed prenatally, 2 were diagnosed perinatally, and 30 were diagnosed postnatally. In all, 115 (72%) pregnancies were terminated. Of the liveborn infants, 75% died before 10 days of age and 90% before 4 months of age. Compared with postnatally diagnosed infants, prenatally diagnosed infants received less intense treatment (median average daily Neonatal Therapeutic Intervention Scoring System score 8.3 versus 14.0; P=0.02), at less cost (median direct cost of hospitalization $1550 versus $8474; P=0.03) and died sooner (median age at death <1 day versus 4 days; P=0.01). Greater treatment intensity did not correlate with longer survival (r=-0.04; P=0.66). CONCLUSION: Although some kinds of medical therapy may be appropriate for newborns with lethal congenital anomalies, highly aggressive interventions did not prolong survival and should not be offered. Even when pregnancy termination is not elected, infants diagnosed prenatally receive less intense care.