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Genetic Disorder
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I worked in newborn screening for 25 years and know how important it is to save lives. All disorders are treatable. If you value children and want them to grow into productive adults, then please continue this committee.
Marcia supported: Don't Abandon Our Newborns: Reinstate the Newborn Screening PanelAs a NICU nurse, I see the thousands of real lives that these newborn screenings impact. When a disease is caught early, treatment makes a huge difference for that child and their family. This committee steers the future of the screening tests, which means we continue to expand the ability of this early testing to help infants and families.
J & A supported: Don't Abandon Our Newborns: Reinstate the Newborn Screening PanelMy five month old daughter was born with severe congenital hypothyroidism, which would have led to irreversible cognitive and physical developmental problems with even a few weeks of delayed treatment. Thanks to the newborn screening, it was identified quickly and she started treatment at four days old, all but ensuring that she will have a normal life. Every day I am grateful that this test exists and that we were able to give our daughter the best possible future because of it. There is no good reason that a baby should suffer brain damage from a condition that could have easily been prevented by an inexpensive blood test and early intervention.
Micaela supported: Don't Abandon Our Newborns: Reinstate the Newborn Screening PanelI personally know a family that this drug has helped save lives for. No one should have to make the decision to not save their child due to financal lack. Pharmaceutical companies and the government can and should pay to save these lives.
Angel supported: Novartis AG: Reduce $2.1M price of the life-saving drug, Zolgensma, that treats Type 1 Spinal Muscular Atrophy!My daughter was born a month prior to the FDA approval of Zolgensma and was fortunate enough to receive it for free through the expanded access program. It has changed her life completely in countless ways and allowed her to do everything she sets her mind to. Every child born with SMA should have the same chance at life she was afforded.
Shannon supported: Novartis AG: Reduce $2.1M price of the life-saving drug, Zolgensma, that treats Type 1 Spinal Muscular Atrophy!We have 3 SMA kids. Their treatment was always delayed by red tape due to the price of the drug. It would be nice if some people higher up would be more willing to realize this is a drug that saves lives, and not just a money maker.
Emily supported: Novartis AG: Reduce $2.1M price of the life-saving drug, Zolgensma, that treats Type 1 Spinal Muscular Atrophy!You’re not alone — a community of supporters is ready to back you.
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