Meeting Public Comments

Names and comments are public records. Remaining information is considered a confidential record.

Comments Submitted:

02-10-2022

Doug Passow [Gene Giraffe Project]

I'm in support of HSB 690.Here's my testimonal if word document doesn't work.Dear Esteemed Colleagues of the Iowa State House:My name is Doug Passow and I am here to address you as the CEO/President of the Gene Giraffe Project, which is located in Clare, northwest of Fort Dodge, and as an uncle to a niece and a nephew who were born with a rare disease called GM1 gangliosidosis. I am asking for your support of (HBS 690), the newborn screening bill. This crucial legislation will make certain newborns receive vital early diagnosis and intervention measures by ensuring each condition listed on the Recommended Uniform Screening Panel (RUSP), developed by the Secretary of the United States Department of Health and Human Services and the Advisory Committee on Heritable Disorders of Newborns and Children, is included in Iowas Newborn Screening Program within two years of being added to the RUSP. Early diagnosis and intervention has been vital for my family. In 2009, my brother Danny and his wife Andrea had a baby girl named Ava. The first six months of Avas life were lived regularly. After six months, she progressively lost all of her ability to crawl, talk, and even move. She was diagnosed with GM1 about a year into her life. GM1 gangliosidosis is a lysosomal storage disease that progressively attacks the neurons in the brain and spinal cord until death by the age of 2 or 3. By that time she was diagnosed, the disease had progressed too much to provide much of any treatment other than to do whats necessary to prolong her life. She died in 2012 due to GM1.In 2017, my brother Danny and his wife Andrea had another child, a baby boy named Jackson. After Jackson was born, he was genetically tested and found to have the same disease as his sister. At around 45 days old, Jackson was the youngest person in University of Minnesotas Childrens Hospital to undergo a bone marrow transplant. His BMT was deemed successful as he regained his enzyme he was missing. As you can see, early diagnosis and intervention was vital for my family. While there is currently no newborn screening for GM1 gangliosidosis, Ava and Jacksons story highlights the importance of early diagnosis and treatment. Newborn screening allows for the earliest possible diagnosis and immediate access to potentially lifesaving treatments and its timely availability will help to save lives in Iowa. Thank you for the opportunity to speak today and I ask you to please support HSB 690, so that every Iowa newborn has the opportunity for early diagnosis and treatment.

Attachment

02-10-2022

Jeremy Penn []

Dear Subcommittee Members:Thank you for the opportunity to share written comments regarding HSB 690. As a parent of a child with an inherited genetic condition, I strongly support the goals of newborn screening of early identification and immediate treatment of children with critical health conditions. Newborn screening is one of the top 10 public health achievements of the last four decades and has decreased mortality and morbidity for hundreds of thousands of children across the U.S. for a very low financial cost. I am writing to you today to ask you to support HSB 690 for full consideration. I am also asking you to consider adding more strength to this bill by ensuring the newborn screening program has sufficient resources to achieve the goals outlined in HSB 690. The bill, as currently written, limits the ability of the newborn screening program to obtain the resources needed to add new conditions to Iowa's newborn screening condition list. Specifically, lines 3334 on page 1 state "subject to the provision of necessary newborn screening capacity and resources." The resource limitation is the primary factor that has slowed Iowa's ability to add new conditions to its newborn screening panel. In closing, I am asking you move HSB 690 forward and add provisions to the bill that would support the newborn screening program's ability to obtain the necessary resources to protect the health of Iowa's babies. Thank you for your time and consideration today.

02-10-2022

Jamie Sullivan [EveryLife Foundation for Rare Diseases]

Dear Chairperson Meyer,As a patient advocacy organization representing individuals diagnosed with rare diseases and family caregivers in Iowa and across the United States, we at the EveryLife Foundation for Rare Diseases thank you for your leadership on newborn screening and ask for your support of HSB 690. Every year, millions of babies born in the US are screened for a variety of devastating and often fatal diseases and conditions that might otherwise go undetected. These simple screens help provide lifesaving early identification, allowing for the earliest possible diagnosis and immediate access to potentially lifesaving treatments for babies. In many cases, early detection can avert costly and risky medical procedures later in life.HSB 690 provides a thoughtful approach to newborn screening in Iowa that ensures that all conditions on the federal Recommended Uniform Screening Panel (RUSP) are added to the screening panel in a reasonable amount of time. The RUSP is periodically updated using a thorough, evidencebased deliberative review process involving a national committee of experts in newborn screening. This legislation allows Iowa to efficiently add new conditions by taking advantage of the work done by these medical experts to remove obstacles to needed testing and minimizing the irreversible disease progression and loss of life that comes from untreated diseases. Iowa is a leader in the field of newborn screening, screening for 32 of 35 conditions currently on the RUSP. However, Iowa does not currently screen for MPS1, ALD, and Pompe Disease. MPS1 and ALD were recommended for addition more than six years ago and Pompe Disease was recommended more than eight years ago. This legislation would empower the Iowa Department of Public Health (IDPH) to ensure that the state implements new screening recommendations within two and a half years. It would also require IDPH to give the General Assembly annual reports on conditions added to Iowas newborn screening panel, conditions under consideration for addition, and an explanation for any delays in addition and/or implementation of conditions to Iowas newborn screening panel.For these reasons, we ask for your support of HSB 690. We are grateful for your leadership on this issue and look forward to working with you and your office to ensure this language becomes law.Sincerely, Jamie SullivanDylan SimonDirector of Public PolicyAssociate Director of Public PolicyEveryLife Foundation for Rare Diseases EveryLife Foundation for Rare DiseasesCC: Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement Claire Ellis, Newborn Screening & Diagnostics Policy Fellow

Attachment