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HILKEMANN INTRODUCES BILL TO ADD SPINAL MUSCULAR ATROPHY TO NEWBORN SCREENING PANEL
Lincoln, NE –State Senator Robert Hilkemann has introduced LB 825 to add spinal muscular atrophy (SMA) to the list of screened diseases for newborns. Hilkemann stated, “I am proud to once again carry legislation that aims to protect the lives of all babies born in Nebraska, and to have Children’s Hospital & Medical Center as a partner in this effort.”
SMA is the number one genetic cause of death for infants. It robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. The disease is caused by a mutation in the survival motor neuron gene 1. Without enough of the SMN protein, nerve cells cannot function properly and eventually die, leading to debilitating and often fatal muscle weakness (SMA State Fact Sheet – NE, 2019). The United States Department of Health and Human Services added SMA to the Recommended Uniform Screening Panel in July 2018.
“This legislation would put Nebraska on the forefront of the important effort to save the lives of babies born with SMA. One in every 50 people is a genetic carrier of SMA – a disease that historically doesn’t get diagnosed until a child is showing serious symptoms. Adding SMA to the newborn screening panel in Nebraska creates an opportunity to change the course of the disease and lead to earlier treatment intervention,” said Kenneth Hobby, President, Cure SMA. “We thank Sen. Hilkemann for his leadership, and urge the Nebraska legislature to quickly approve this bill during the 2020 legislative session.”
Nebraska law requires all babies to be tested for 32 core conditions. In 2018, this resulted in identifying and treating 50 newborns in time to prevent or reduce problems associated with identified conditions (2018 Annual Report Newborn Bloodspot Screening, 2018).
“It is very important that the legislative body of the State of Nebraska support LB 825 to add SMA to the Nebraska Newborn Screening Panel. The Nebraska Newborn Screening Advisory Committee has recommended adding SMA to our panel so we can identify children as soon as possible so they can receive lifesaving treatment,” said Robert Rauner, member, Newborn Screening Advisory Committee. “Support of this bill will make this lifesaving treatment available to the newly screened babies that are identified via SMA newborn screening.”
Senator Robert Hilkemann represents District 4, encompassing west Omaha, in the Nebraska Legislature. He was elected in 2014 and re-elected in 2018. He serves on the Appropriations Committee and is the chairperson of both the Committee on Committees and the State-Tribal Relations Committee.
District 4 Constituents:
Thank you for visiting my legislative webpage!
The 105th Legislature, 1st Session is underway. Today marks the 50th day of the session, which means we are slightly over halfway done with our 90-day session this year. I was pleased to meet the Legislature’s 18 new state senators following their election in 2016; they are a fascinating group with diverse views, and each one has brought a new and interesting perspective to the body. So far, we have debated the rules that govern our legislative process, passed budget adjustments at the recommendation of the Governor, and held committee hearings on every introduced bill. Surely, there will be many more interesting debates to come.
For the third year in a row, I led a coalition of senators in opposition to an attempt to repeal Nebraska’s helmet requirement for motorcycle riders. As a medical professional, I have firsthand experience working with patients with severe head injuries from motorcycle accidents. Furthermore, national data shows that when helmets are not mandated for motorcyclists their use decreases, and the number of fatalities and head injuries increases. This year, as in years past, we were successful in our attempt to stop this measure.
Additionally, as in my previous two years, I serve as a member of the budget-setting Appropriations Committee. Nebraska is unfortunately facing a difficult budget shortfall, and our committee is working diligently to ensure that our state gets back on track to good fiscal health. I am committed to ensuring that we are protecting the interests of taxpayers, controlling spending, and working to trim the budget wherever possible in my future work with the committee.
And, finally, I introduced several bills this year. A summary of each one is included below:
This year, I designated LB91 as my priority bill, with an amendment that also incorporates my LB 401. This measure will modernize terms and change the fee for the administration of the Newborn Screening Program to no more than $20. In addition, three diseases will be added to the newborn screening program. These diseases are X-linkedadrenoleukodystrophy (X-ALD), mucopolysaccharidoses type 1 (MPS-1), and Pompe disease. I introduced these bills after a 2015 meeting with a constituent named Meghan, whose life was forever altered by X-ALD after the death of her father, who carried the disease. Screening for this disease would allow early intervention to change the lives of Nebraska babies. I look forward to working with my colleagues to pass this important legislation.
Thank you again for visiting. Please contact my office at any time if you have questions or concerns about any of the issues facing our state.
We all know our immigration system is broken. Who knows when or if it will ever be properly repaired. Our president, through an administrative memorandum, did allow some unauthorized immigrants to lawfully work through a program called Deferred Action for Childhood Arrivals (DACA). This is a defined population that consists of young people most of whom were brought here by their parents. Many of them are working toward becoming citizens.
These young people have been in our public schools and colleges. As a result of the DACA program, these young people are given lawful presence and employment authorization, which means they can work legally and pay taxes on those earnings. If these young people go into careers that require state licensure, our state currently denies them licenses based on their immigration status.
What LB947 did was allow these young people who have the necessary skills and education to at least apply for a license or certification.
A recurring theme I have heard from businesses is they have difficulty finding employees. That is why our Chambers of Commerce, the Nebraska Cattleman’s Association, and even Mayor Stothert, believe that we need to increase and improve our employee base.
If LB947 becomes law, these young people can be licensed as stylists, teachers, CPA’s, pharmacy techs, or any other profession for which they are qualified that requires state licensure (more than 170 different careers). If these young people chose to go into any one of these careers, and we don’t grant them licenses, they must leave our state to find gainful employment in their profession. It makes sense to me that if we are going to grant them lawful presence and allow them to work, then we should allow them to work in careers that will let them earn more and generate more tax dollars. Even more importantly, not utilizing them to their full potential is a waste of human capital. This will allow many of them to work at jobs that offer health care benefits. They can begin to save for retirement and they will generate more spending capital in Nebraska.
An amendment was added on Select File which specifically clarifies that no public benefits other than commercial or professional licensure will be extended to such immigrants. The measure also specifies that if they lose their authorization to work because the DACA program is terminated, their licenses will be revoked – our state closely monitors these licenses and most need to be renewed annually or bi-annually.
I believe Emily Nohr’s article in the OWH covers the issue well.
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