|Posted:||March 9, 2017 02:38 PM|
|From:||Representative Angel Cruz|
|To:||All House members|
|Subject:||Limiting the Department of Health’s Ability to Make Changes to the Newborn Child Screening and Follow-up Program|
In the near future, I plan to reintroduce HB 2096 from the 2015-2016 legislative session. This legislation would amend the ability to make changes to the mandatory and supplemental listing of diseases for newborn screening and prevent the diseases added through Hannah’s Law from being removed from the mandatory listing by the Department of Health.
Currently, the Newborn Screening Act allows the Department of Health, with the approval of the Newborn Screening and Follow-up Technical Advisory Committee, to make changes to either listing of diseases through publication in the Pennsylvania Bulletin. My legislation would change this by only permitting the addition of diseases to the listings, removal of diseases from the listing of supplemental diseases and moving diseases from the supplemental listing to the mandatory listing.
As you know, Hannah’s Law was inspired by Hannah Ginion, who was diagnosed with Krabbe at four months and succumbed to the disease on December 28, 2014, two months after Act 148 added Krabbe and five other Lysosomal Storage Disorders (LSDs) to the Newborn Child Testing Act. By adding these six diseases to the mandatory newborn screening schedule, we informed Pennsylvanians that the health of our children comes first. Although Hannah and her family suffered because Krabbe was not being screened for, their courage and inspiration led to a law that would prevent the same fate for other children.
Unfortunately, more than two years have passed since Hannah’s Law was to be implemented. Now, not only is Hannah’s Law not going to be implemented by the Department of Health as passed by this legislature, but four of the six diseases are being moved by the Department from the mandatory to the supplemental screening listing. For the Department to act in such disregard to the will of the lawmaking body of this great Commonwealth is abhorrent to me. Their action is what is prompting the introduction of my legislation.
When legislation is passed by this body and signed into law, it is understood that the law will be implemented, not circumvented. Furthermore, it is confusing, dangerous and irresponsible to change this law now, after Pennsylvania families have been told for more than two years that their newborns would be screened for these disorders. Most concerning is that entities responsible for conducting newborn screening are under the impression that these six diseases are included in testing, when reality is that only one hospital is performing the screening. Therefore, I ask that you join me in co-sponsoring this legislation to require the Department to put the health of our children first by finally implementing Hannah’s Law.
If you have any questions or concerns, please contact my Harrisburg office at 717-705-1925.
Introduced as HB1351