Currently, the risk of a child being born within The Commonwealth and going undiagnosed is too great.  With an estimated 105,000 births per year in the state, there is an estimated 2 to 3 children per year that will likely be born with SCID. The chances of death are much higher for children who go undiagnosed until they present with life threatening illness.  Survival rates drop from 94% to 75% for those with a late diagnosis.  The cost to insurance or Medicaid to treat one late diagnosed child can run into the millions.  This measure not only saves lives, but is cost effective as well.  This action should be approved and enacted in the quickest manner possible.

Barb Ballard

My 4th child was diagnosed with SCID, but at an older age. His treatment and procedure would have been quicker and easier if diagnosed earlier in life. My 3rd passed away for, essentially, reasons unknown. After my 4th was born, they surmised my 3rd had SCID as well. My 3rd would have been diagnosed if the state had new born presecreening. Many children have been misdiagnosed or not diagnosed due to lack of screening. 

February 12, 2013

Virginia Department of Health
Regulations Governing Virginia Newborn Screening Services

RE: Amend regulations to add Severe Combined Immunodeficiency (SCID) to the Virginia Newborn Screening System core panel of heritable disorders and genetic diseases.

As you determine the possible acceptance of the Advisory Committee’s recommendations concerning Severe Combined Immunodeficiency Disease (SCID), the Immune Deficiency Foundation respectfully urges you to decide in favor of adding SCID to the state’s newborn screening program.

Founded in 1980, the Immune Deficiency Foundation (IDF) is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.  These diseases occur in persons born with an immune system that is either absent or hampered in its ability to function. The World Health Organization recognizes more than 185 primary immunodeficiency diseases - some conditions more rare than others.  Severe Combined Immune Deficiency (SCID) is one of the rarest and the most devastating primary immunodeficiency disease.

SCID (also known as the Bubble Boy disease) is a primary immunodeficiency disease that is a pediatric emergency.  Babies with SCID, a disorder that causes babies to be more susceptible to and develop recurrent infections, appear healthy at birth but without early diagnosis and treatment cannot survive. The decision to screen for SCID will literally save the lives of infants in Virginia.  If newborn babies are screened for SCID, diagnosed and treated within 4 months, there is a 94% chance that those babies will be able to live normal, healthy and productive lives.

In May 2010, Secretary Kathleen Sebelius of the Department of Health and Human Services, announced her recommendation that Severe Combined Immunodeficiency Disease (SCID) should be added to the 29 disorders on the core panel for universal screening of all newborns in the United States.   California, Colorado, Connecticut, Delaware, Florida, Massachusetts, Michigan, Minnesota, Mississippi, New York, Texas, Wisconsin and the territories of Puerto Rico and the Navajo Nation have already implemented newborn screening for SCID, which has led to the identification and treatment of dozens of infants with SCID and many more with other kinds of T cell deficiencies.  All of these babies will now have the opportunity for early treatment and the chance of a normal, healthy life because they had early detection.

 Please help expand the Virginia Newborn Screening Program by setting an example and showing others that every life is worth saving!  Please decide in favor of adding SCID to the state’s newborn screening program to ensure Virginia’s tiniest citizens have the best chance at a healthy start in life.

For more information about SCID newborn screening, please visit the IDF SCID Newborn Screening Campaign website at http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign. Thank you for your consideration of this critical issue.

Sincerely,

Marcia Boyle
President & Founder
Immune Deficiency Foundaiton
40 W. Chesapeake Ave., Suite 308
Towson, MD  21204
(410) 321-6647 (main)
800-296-4433 (toll free)

www.primaryimmune.org 

Please include SCID in newborn genetic screening in Virginia.  Knowledge is power for the parents of afflicted babies and early awareness can enable doctors to start early treatment that can save lives.  If my grandson had been diagnosed at birth there is a very good chance his life could have been saved.

FOr these children to have a chance with treatment, this test must be given as physical examination will not detect a breakdown in the cells.

Please include SCID in newborn genetic screening in Virginia.  Knowledge is power for the parents of afflicted babies and early awareness can enable doctors to start early treatment that can save lives. 

I beg of you - PLEASE include SCID testing in newborn genetic screening in Virginia.  I lost my very first grandson, Hayden Isac Parsons, to SCID's at age 3.  He was 2 years old when he was diagnosed with SCID's.  He went to Children's Hosptial for IVIG treatments and after his 3rd birthday, went to Children's Hospital for Chemo and Bone Marrow transplant. The bag busted and they gave him the BMT anyway.  He had complications from the BMT and he died.  No PARENTor GRANDPARENT should have to live in the unknown till they are later diagnosed with SCID's...and then lose their child.  PLEASE, I beg with a broken heart, include SCID testing on all newborns!!!  I can't have my precious Hayden back, but we CAN help other familes keep their children!  Do this for the children, do this for my precious Hayden!  Thank you!

Adding SCID to the panel of newborn screening in Virginia is not only the smart thing to do from the perspective of catching the disease before it is a problem. Studies have shown that by doing this, costs incurred by the health care system (including Medicaid) decrease substantially. Babies born with SCID have a much better chance of not only surviving, but being cured when the disorder is caught early.

I urge the Virginia Department of Health to add SCID screening to the panel. Thank you.

Please, please, please add SCID screening for newborns in Virginia.  The pain I witnessed  watching my niece and her husband endure 5 hard months, trying treatment after treatment to try and save their newborns life was painful.  This poor baby experienced 5 very painful months while he was here, and fought the whole time.  He wanted to be here as much as we wanted him to be here.  He left behind a huge following of people that never got to meet him and made a huge impact on everyone's life.  He had a big sister that had to watch and experience something she should never  have had to.  I presently have a son that's girlfriend will be having a baby in August.  I would like to think that they wouldn't have to endure any similar experiences.  This testing shouldn't be anything we should be having to sign petitions for or beg for.....this should be a given.  Again, please add this testing for newborns in Virginia.

Please expand the Virginia Newborn Screening Program to include SCID. The statistics that are out there are correct. If a newborn is properly screened for SCID, diagnosed and treated within the first 4 months of life, there is a 94% chance that these babies will live normal productive lives. SCID's is a disease that I am very familiar with. In 2002, I became a bone marrow doner for a 6 month old infant who was diagnosed at the age of 4 months. As part of the National Marrow Registry, he was an international recipient. He is a survivor! His mother is a big advocate in the UK for SCID's and I want to do my part as a proud Virginian to make sure that we are taking care of our children and doing the necessary screenings to assure their good health.

Please mandate SCID testing for newborns. This test can make the difference between life and death. Infants identified and treated within 4 months, are much less likely to succumb to the disease than those diagnosed later. Most people are familar with David Vetter- "The Bubble Boy", and his struggle to live. The treatment has come a long way since David passed away. Every child deserves a chance to live a healthy and happy life. Even if this test saves only 1 child a year, it is woth while, because to that family that 1 child is their world.

Screening helps the medical community to be more proactive and creates more anticipation into the process.  Newborns who are treated early will have a greater chance of survival and in the long run it will reduce cost of care for everyone.  

Please include SCID testing in newborn genetic screening in the state of Virginia.

I urgently urge your support for to add severe combined immunodeficiency to the Virginia panel of screened disorders at the recommendation of the Virginia Genetics Advisory Committee. If newborn babies are screened for SCID, diagnosed and treated within 4 months, there is a 94% chance that those babies will be able to live normal, healthy and productive lives. So please give these lives a chance.

Sincerely,

Thomas L. Wilborn

SCID (also known as the Bubble Boy disease) is a primary immunodeficiency disease that is a pediatric emergency.  Babies with SCID, a disorder that causes babies to be more susceptible to and develop recurrent infections, appear healthy at birth but without early diagnosis and treatment cannot survive. The decision to screen for SCID will literally save the lives of infants in Virginia.  If newborn babies are screened for SCID, diagnosed and treated within 4 months, there is a 94% chance that those babies will be able to live normal, healthy and productive lives.

As a person who struggles with a primary immunodeficiency every day of my life, I feel very strongly that SCID should be a part of babys' screenings. PLEASE do what you can to help the tiniest of Virginians toward better lives. Thanks.

I am asking and urging you to require SCID screening for newborns in Virginia.  Innocent newborns and infants should never leave this earth because they were either not diagnosed or were diagnosed too late in their life.  This is non-negotiable, nor should we ever have to sign a petition when it comes to their health.  Put parent's anxieties at ease and require the SCID screening!

I believe testing newborns will save many lives or at least start an early treatment