Texas Department of State Health Services
NEWS RELEASE
May 3, 2012

Texas to Test Newborns for SCID, a Life-Threatening Immune Disorder

The Texas Department of State Health Services is adding severe combined immunodeficiency, SCID, to the list of diseases that all newborns in Texas are screened for at birth. The DSHS laboratory plans to begin screening for SCID in September using the same newborn screening specimens already collected to test for 28 other rare disorders.

SCID is a group of genetic disorders that causes profound defects of the immune system, the body’s line of defense against all types of infections. SCID is one of the most critical immune system problems and occurs in an estimated one in 40,000 to one in 100,000 newborns. If it is not treated, most affected infants die within the first year of life.

“I’m very happy that Texas will begin screening for SCID,” said DSHS Commissioner Dr. David Lakey. “While SCID is an extremely serious condition, it can be treated successfully if it is detected early. Adding this screening will help give Texas babies with SCID the opportunity to live normal, healthy lives.”

Texas operates the largest newborn screening program in the nation, testing about 800,000 specimens per year. The blood to be tested is drawn by a simple heel stick within 48 hours of birth and again at one to two weeks of age. The screening provides an opportunity to detect medical conditions that, if not addressed early, would cause serious problems like developmental delays, major illness or death.

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(News Media Contact: Chris Van Deusen, DSHS Assistant Press Officer, 512-776-7753)

DSHS Press Office on Twitter

Last year, the Florida Governor line item vetoed similar language, eliminating any chance for SCID screening to become a reality in the Sunshine State.  Since that time, advocates like IDF volunteer and co-founder of SCID, Angels for Life Foundation Heather Smith

Heather Smith (far left) with Dr. Elena Perez, her son Taylor and husband John

have redoubled their efforts to make sure that a similar fate did not await the provision this year.  Heather and other parent advocates who have lived through the consequences of a world without newborn screening and the early intervention it allows have participated in meetings with public officials and encouraged media coverage to ensure their message of the importance of newborn screening for SCID was heard throughout the state.

Congratulations to everyone who participated in the calls to action and let their voices be heard about this critical issue!  The budget takes effect July 1, 2012.  Advocates are hopeful that implementation can start at that time.

Thank you to all of IDF’s phenomenal volunteers who are working to see SCID newborn screening in all 50 states!  Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state!  Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved. To learn more about the IDF SCID Newborn Screening Campaign and how you can get involved in your own state, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign

Susan Giorgi-Branch's granddaughters, one of whom was tested for SCID at birth

As Susan says, “Screening has not been implemented here as of yet on a regular basis, however, asking about being testing made it possible.” Susan feels it is important for parents to know that in cases where there is a family history of a primary immunodeficiency disease the baby may be able to get tested for SCID even if their state does not have mandatory screening yet. This is something to discuss with your physician, if you feel like this situation might apply to you. In Susan’s case, while her granddaughter was not positive for SCID, it truly put the family at ease to know that she was tested and pronounced healthy.

Without SCID newborn screening, Samantha Penn was not diagnosed early enough to be effectively treated

The story details the lives of families who were not lucky enough to have their children identified by newborn screening for SCID and highlights the voices of experts and advocates who are supporting the inclusion of SCID testing for newborns in all 50 states.  To read the story please click on the link below.

http://www.foxnews.com/health/2012/03/29/parents-doctors-urge-states-to-screen-for-bubble-boy-disease/?intcmp=features

To learn more about the IDF SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign

As the article quoted Dr. Sleasman of All Children’s Hospital, “If we intervene early and treat, everybody goes home happily ever after.”

Last year, Governor Rick Scott line item vetoed funding for SCID screening in the state’s budget.   Advocates in the state are hopeful that bringing attention to stories like Kye’s will illustrate to Governor Scott the importance of adding newborn screening for SCID to Florida’s newborn screening panel.

To Read the full article please visit

http://www.wtsp.com/news/article/244966/8/Doctors-parents-urge-testing-for-SCID

Alethea Arthur and Heather Smith, both mothers of children born with Severe Combined Immune Deficiency (SCID), are continuing their fight to see newborn screening for SCID become a reality in their home state of Florida. They are hoping that Governor Rick Scott will pass an item in the budget that will provide for the funding of this lifesaving test and save dozens of babies in Florida from the heartbreak and pain that late diagnosis of SCID in their children has caused these women.  Governor Scott vetoed a similar measure last year, but advocates are hopeful that with increased awareness and education SCID newborn screening will finally come to Florida. Please listen to the interview conducted by Sascha Cordner of WFSU on March 23, 2012.

http://wfsu.drupal.publicbroadcasting.net/post/proposal-newborn-screenings-governors-desk

To learn more about the IDF SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign

http://genes-r-us.uthscsa.edu/nbsdisorders.pdf

IDF volunteer Donna Sawyer at the Delaware State Lab on December 29, 2011

Delaware has officially launched a pilot program to begin screening for SCID!  In recognition of the statewide screening, IDF volunteer and SCID mother Donna Sawyer visited the Delaware State Lab with her family on December 29, 2011 to see the new equipment and meet the staff running the SCID tests.

Last year, Donna presented at a meeting of the Delaware State Newborn Screening Advisory Committee to share her personal experience with late and early SCID diagnosis of her two children.  Her oldest, a daughter, was not diagnosed until becoming very ill while her youngest, a son, was diagnosed at birth after screening for SCID based on the family history.  Her daughter was diagnosed with SCID at 10 months of age and received a life-saving bone-marrow transplant from her mother, but unfortunately she was so ill she suffered multiple organ failures, required dialysis and had a stroke that resulted in permanent brain damage.  Meanwhile, Donna’s son received a marrow transplant at Duke when he was just 14 days old and he, unlike his sister, suffered no permanent consequences of the disease.

Donna could not be more pleased to see this goal become reality, “We are very, very happy to see this being done now.”

You can read more about SCID screening in Delaware at http://www.delawareonline.com/article/20111230/NEWS/112300335/Parents-past-worry-will-save-Delaware-babies-lives?odyssey=nav|head

Thank you to all of IDF’s phenomenal volunteers who are working to see SCID newborn screening in all 50 states!  Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state!  Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved.  To learn more about the SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign

Congressman Flores with Jennifer Garcia

This holiday season, Jennifer met with Congressman Bill Flores on December 21, 2011.  Jennifer scheduled 20 minutes to speak with the Congressman, but ended up staying and talking with Representative Flores for over an hour!  As a result of the meeting, Rep. Flores promised to write Dr. David Lakey, Commissioner of DSHS, and ask him to implement SCID newborn screening as soon as possible.

On January 4, 2012 Jennifer was asked to speak to the DSHS staff and lab faculty about SCID and newborn screening.  As an added bonus, she was able to meet with Commissioner Lakey and speak with him about the issues.  As Jennifer describes her experience following their conversation, “The meeting today with Commissioner Lakey was very, very positive.  As a mom on a mission I left happy today after our meeting. I feel Texas will have good news soon.”

Thank you to Jennifer and all of the mothers and advocates throughout the country who tirelessly work toward universal SCID newborn screening.

Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state!  Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved.  To learn more about the SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign