Introduction
According to the CDC, almost 6,000 babies in the US are born with severe disorders every year, most of which can be treated, and can be identified through newborn screening programs (Centers for Disease Control and Prevention, 2013). Local, state and federal healthcare facilities play critical roles in newborn screening programs by ensuring that all newborns are screened for any disorders and providing results that are as accurate as possible without delays. It is imperative that newborn screening programs are promoted across various states to identify babies that are at high risk of treatable rare conditions and may require follow-ups.
For the past 50 years, there have been efforts to enhance newborn screening programs in the US. However, there have been recent amendments (2013) to the Newborn Screening Saves Lives Reauthorization Act after President Obama signed the bill to allow parental consent to enhance privacy because of genetic research that could be used to identify the child later (Gabler, 2014). In addition, the bill was introduced with some quality measures to reduce delays and enhance data accuracy across different laboratories in the country.
Newborn screening is important to nursing because it aims to save lives, and saving lives is the core of nursing. The program is vital for identifying high-risk infants who may develop certain health complications later. Newborn screening programs should be based on sound research and speed to save lives, particularly for rare conditions. It is however noted that thousands of state healthcare facilities fall short of meeting newborn screening programs, experience deadly delays while any perceived failures are concealed from public scrutiny. Meanwhile, newborn babies and their families continue to experience anguish. The issue of sending babies’ blood samples late to state laboratories, deadly delays (a focus on timeliness) and lack of standardized data are vital for nursing and require improvements. Screening programs are used for quality assurance, identify certain disorders, refine cutoff levels for such disorders and improve other aspects of public health challenges.
Newborn Screening Stakeholders
At the Federal level, the government continues to increase and release funds to support newborn screening programs nationally. The bill, for instance, allowed for about $20 million in spending, and it reauthorizes a measure that normally provides funds to several newborn screening programs specifically for the federal state managed newborn screening programs (Gabler, 2014). At the federal level, Senator Arthenia L. Joyner (D) and members of the Committee on Health Policy for the State of Florida are responsible for advocating for the support of health on newborn screening programs. For this specific policy, Senator Denise Grimsley is the best policymaker to spearhead it. She is a member of the Committee on Health Policy and generally focuses on health policy reforms in Florida.
To reach the Senator, I will contact her Legislative Assistants, Larry Ford and Marty Mielke based at the District Office or Anne Bell and Andrea Jahna at the Satellite Office. The Senator can be easily reached through several contacts details, including phone numbers, physical addresses, and the Senate VOIP provided on the State Web site.
The Plan for Legislative Visit: When, where, and how
I am most likely to realize the visit once Senator Grimsley confirms her availability within the month of June. The most suitable venue for this meeting would be the Senator’s District or Satellite Office. Others locations will also be appropriate based on the Senator’s preferences. To secure a meeting with the Senator, I will present a formal letter with preliminary briefing on the issue of newborn screening programs. Thereafter, phone call follow-ups will be initiated.
The Message
The US newborn screening programs are vital for managing public health issues, sharing data, developing cutoff levels for identified disorders. Newborn screening however relies on speed and effective interventions to save lives of babies with certain rare conditions. The major challenge is that many state-run healthcare facilities experience deadly delays, financial drawbacks and normally ignore or conceal noticeable failures. Meanwhile, newborns and their mothers continue to experience pain.
As previously mentioned, there are over 6,000 newborn babies in America with rare conditions (Centers for Disease Control and Prevention, 2013). In addition, there are infants with high risks for chronic diseases such type 1 diabetes. Such infants require immediate screening and monitoring for the rest of their lives to determine appearance of certain conditions, which indicate early signs of disease progression and as such, effective interventions can be used. It has however been noted that currently available state-run healthcare facilities cannot adequately meet newborn screening needs. Such screening programs are characterized by deadly delays, system failures, and tendencies to conceal such failures (Gabler, 2014).
Researchers have demonstrated that the number of conditions currently considered for newborn screening panels has risen tremendously in the US within the past decade (Prosser, Grosse, Kemper, Tarini, & Perrin, 2012). In addition, many more conditions are under investigation and further consideration to be included in the panels. While only 43 states are actively engaged in newborn screening, not all of them have screening programs for 37 core conditions (Holtzman, 2014).
The major issue is that these conditions are normally rare and therefore screening them is a major source of challenge. Other studies have established that newborn screening data for the US had increased over the past two decades for primary congenital hypothyroidism (CH) from 1 in 4098 to 1 in 2370 births (Olney, Grosse, & Vogt Jr., 2010). This reflects only a single case of a rare condition. Thus, it becomes imperative for one to probe screening programs and statistics for other rare conditions. Moreover, there have been changes in the notable trends for different conditions. In this regard, it is imperative to get definitive explanations, specific clarifications on newborn screening programs and notable public health responses, which could have triggered actions among clinicians, public health officials, nurses, physicians and advocates among other stakeholders involved in newborn screening programs (Olney et al., 2010).
Recommendation
I recommended that there should be effective health policies to support funding, research and screening of other notable rare conditions in newborn babies in state-run healthcare facilities in a timely manner.
As mentioned above, the current system cannot adequately meet newborn screening needs in a timely fashion while babies and their families continue to suffer. New policies should encourage newborn screening programs, timely delivery of samples to laboratories and standardization of data. Many more conditions should be considered for screening.
Therefore, the purpose of this visit is to advocate for newborn screening programs and achieve favorable outcomes in all spheres.
The Plan to Convey the Message
I intend to deliver this message within the first opportunity available because the Senator has a busy schedule. In any case we cannot have a face-to-face meeting, I will consider other alternatives including video conferencing and telephone interviews. One major challenge is to determine the most appropriate presentation mode. Nevertheless, only issues supported with facts will be delivered to the Senator.
Feedback from Policymakers
I expect the Senator to raise the issue with other members of the Health Committee. Thus, a short summary of relevant points will be appropriate to guide the Committee members. During the visit, I will gather all data for review and identify areas that require further deliberation with nurses and other concerned stakeholders in newborn screening programs.
It is known that policymakers influence healthcare policy formulation and therefore their inputs and support are imperative to the success of this issue.
An influential Senator has been identified for the issue. This requires effective preparation and presentation so that outcomes can be clear for further deliberations. I will use my experiences as a nurse to articulate concerns with the current newborn screening programs.
Senator Denise Grimsley will be reached through any of her three offices. Alternatively, I will use phone calls or e-mail addresses provided for further follow-ups.
Favorable visit outcomes will highlight the plight of newborn babies and their families for screening programs and experiences of nurses in such conditions. This would demonstrate nurse advocacy roles and leadership capabilities that support improved healthcare outcomes.
Conclusion
A positive result from the policymaker would reflect the importance of newborn screening programs to public health in the US. Consequently, the required resources may be considered during Federal, State and local budgetary allocation for newborn screening programs. Such outcomes are vital for the core nursing role of saving lives and public health issues.
References
Centers for Disease Control and Prevention. CDC Looks Ahead: 13 Public Health Issues in 2013. Web.
Gabler, E. (2014). U.S. Senate OKs newborn screening measure. Journal Sentinel. Web.
Holtzman, N. A. (2014). Newborn Screening for Severe Combined ImmunodeficiencyProgress and Challenges. Journal of the American Medical Association, 12(7), 701-702.
Olney, R. S., Grosse, S. D., & Vogt Jr., R. F. (2010). Prevalence of Congenital Hypothyroidism—Current Trends and Future Directions: Workshop Summary. Pediatrics, 125(Supplement 2), S31 -S36.
Prosser, L. A., Grosse, S. D., Kemper, A. R., Tarini, B. A., & Perrin, J. M. (2012). Decision analysis, economic evaluation, and newborn screening: challenges and opportunities. Genetics in Medicine, 14, 703–712.