The Immune Deficiency Foundation's Blog for Newborn Severe Combined Immunodeficiency Screening
The U.S. National Screening Status Report lists the status of newborn screening in the United States. Check out where your state stands with SCID newborn screening!
Posted in General Information.
– January 20, 2012
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
Posted in Delaware.
– January 9, 2012
Texas mom and SCID newborn screening advocate Jennifer Garcia does not stay still for long. Jennifer has been all over the state of Texas this year convincing hospitals to join in the state’s pilot SCID newborn screening program. In her spare time, she has also been meeting with policymakers from state legislatures to Department of State Health Services (DSHS) officials advocating for statewide implementation of SCID screening.
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
Posted in Texas.
– January 6, 2012
IDF Oklahoma volunteers Sara and Jeremy Penn are on a campaign throughout their state to make parents, health department officials, and other policymakers aware of SCID newborn screening and its potential to save lives.
Last month, the couple hosted a booth at the Community Baby Shower in Tulsa, OK . They distributed information on newborn screening and SCID, and other primary immunodeficiency diseases. Sara and Jeremy had the opportunity to speak to the whole group about their cause as well as talk to expectant mothers and care-givers individually. The duo also played a game with people called “Bobbing for Bubbles” with little bottles of bubble soap. The game was fun for participants, but more importantly, made a lasting impression about the ”Bubble Boy” disorder.
The Oklahoma Genetics Advisory Council recommended adding SCID to the state’s newborn screening panel at their May 19, 2011 meeting. The Penns attended this meeting to share their personal experience combating the infections that took their daughter’s life this year because she was not immediately diagnosed with SCID and treated. Oklahoma has not yet set a public timeline to implement SCID newborn screening. However, since the May recommendation, another baby has been diagnosed with SCID after becoming dangerously ill in the same hospital where Sara and Jeremy’s daughter was born.
Sara expressed her frustration with the slow process of adding SCID screening in Oklahoma, “SCID screening cannot come quickly enough to Oklahoma and every other state that has yet to implement.”
With this goal in mind, Sara and Jeremy continue to contact the Oklahoma Health Department requesting them to take action before yet another child has to suffer and risk life waiting for a diagnosis. The Penns are determined to continue raising awareness and fighting for SCID newborn screening, using their grief and personal tragedy to fuel their dedication to this cause. They want future children to have the chance at early diagnosis and a healthy life that their daughter did not.
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
Posted in Oklahoma.
– November 2, 2011
SCID mom and volunteer Jennifer Garcia
Texas mom Jennifer Garcia has made it her life’s mission to educate others about SCID and the importance of newborn screening since her son Cameron died of this devastating disease on March 30. Jennifer and her husband had already had a healthy boy and were not anticipating any issues when Cameron was born late last year. Unfortunately, without a family history and only spotty newborn screening for this condition throughout the country, it is very unlikely that a baby with SCID will be identified and diagnosed until the child becomes very ill. In Cameron’s case, by the time he was diagnosed with SCID his little body was suffering with meningitis and pneumonia and needed machines to breathe.
Now Jennifer has thrown herself into volunteer work, working with doctors and nurses at various hospitals to recruit Texas hospitals to participate in a pilot program for SCID screening that was implemented by the state Department of State Health Services. She has also met with state legislators and other officials to discuss the importance of adding SCID to the Texas newborn screening panel so that all babies born in the state will be screened, not just those who are fortunate enough to be born in one of the hospitals participating in the pilot study. Jennifer has taken the most horrifying experience that can happen to a parent and turned it into fuel for creating a positive change for many more parents and families. She says she will not stop pushing until all babies born in Texas are screened for the condition that took her son’s life. You can read more about Jennifer’s story at http://www.theeagle.com/lifestyles/Cameron-s-story–CS-baby-s-death-puts-rare-disease-in-focus–6709820 .
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
Posted in Texas.
– October 25, 2011
On October 4, Virginia’s Genetics Advisory Committee met to discuss the proposed addition of SCID to the state’s newborn screening panel. IDF Board of Trustees member Barb Ballard presented on the current status of implementation throughout the country. Dr. Anne Comeau from Massachusetts’ Newborn Screening lab also presented and spoke about the experience in Massachusetts of adding SCID, emphasizing how the state set up screening and follow up. Massachusetts has been screening since February 2009, resulting in finding four babies in the state with SCID. After hearing the compelling information, the Advisory Committee voted to recommend SCID newborn screening!
The newborn screening program will soon arrange for a meeting of immunologists within Virginia and experts outside the state to discuss follow up protocols. While no legislation is required, the state has to update their regulations to include SCID as a named condition for screening. Though the state did not establish a timeline for the launch of SCID screening and there are still some administrative hurdles to overcome, Virginia is making admirable progress toward the goal of SCID screening!
Thanks go to Barb who has been working tirelessly in her state to see this progress achieved.
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
Posted in Virginia.
– October 13, 2011
Heather and the Hardens with Florida Surgeon General Dr. Frank Farmer
On Thursday, September 29, 2011 IDF Volunteer and Co-founder of SCID, Angels for Life Foundation, Heather Smith, traveled to Tallahassee for a meeting with the Florida Surgeon General, Dr. Frank Farmer. She was joined by Audrey and Kyle Harden, parents of a SCID baby who passed away in February 2011, whom are now pregnant with their second child. Heather and Audrey took turns sharing their stories with SCID, emphasizing that their tragic losses occurred because neither of their children had been screened at birth for this treatable disease. Although Heather’s story took place almost 18 years ago, before newborn screening for SCID was even an option, she has witnessed firsthand how early diagnosis and treatment can save a child’s life, like in the case of her second SCID child, Taylor, who has been treated with a bone marrow transplant and is living a full and productive life.
Back in May of 2011 Florida Governor Rick Scott line item vetoed the bill that would allow the Florida DOH to begin screening all newborns at birth for SCID, keeping them compliant with the HHSA federal recommendations. Currently, FL screens all newborns for 34 conditions but until they begin screening for SCID, the 35th condition, they are considered to be non-compliant with the federal recommendation made by Secretary of Health Kathleen Sebelius back in May of 2010 when she added SCID to the core panel of conditions to screen for.
As Heather and the Hardens continue to try and secure a meeting with the Governor, this meeting with the Surgeon General was certainly a step in the right direction. Although Dr. Farmer doesn’t have the authority to override a veto from the Governor, SCID is now on his radar and he now understands the importance of this program. He has promised to support SCID screening and now every time he hears the word SCID, he will think of the stories that were told about Brandon and Annabelle and how their lives were cut short by this cruel condition.
Unfortunately, implementing newborn screening for SCID in Florida isn’t going to happen overnight but this is a prime example of how you can’t let a stumbling block get in your way or stop you from achieving your final goal. Use every opportunity you’re given to educate others on the importance of universal newborn screening for SCID and together we’ll see this happen in all 50 states!
Posted in Florida.
– October 5, 2011
October heralds the start of autumn with a new crispness in the air and the leaves changing all around us. This October also marks a special change in the air for families in Michigan, Colorado, and Connecticut. Starting in October, newborns in these three states will be screened for Severe Combined Immune Deficiency! For families impacted by SCID in these states, the news is a long time coming. IDF volunteers Marisa Main in Michigan and Lisa Forrest in Connecticut have both advocated in their respective states to add SCID to the newborn screening panels for over a year to finally see this day when new parents will not have to wait for a serious and life threatening infection to learn that their child has a primary immunodeficiency disease.
With the addition of these three states, there are now eight states and the territory of Puerto Rico that routinely screen for SCID at birth. While this may not seem like a large number, it is phenomenal considering that just one year ago that number was less than half of that! Also, there are currently 13 more states along with the District of Columbia that have voted to add SCID to their state newborn screening panels. This campaign is making a difference! We must continue to be persistent with our efforts and put pressure on states that are not moving forward. We WILL get there!
UPDATE: Colorado plans to begin screening for SCID in October 2011 but has been delayed from their October 1 targeted launch date.
Posted in Colorado, Connecticut, Michigan.
1 comment
(click here to add a comment)
– October 3, 2011
By the end of 2011, roughly 10 states will have newborn screening for SCID with more to follow in the upcoming years. With this in mind, IDF is pleased to announce the availability of a new educational handout for parents who receive an abnormal result from the TREC test. We are hopeful that states will utilize this information as part of their follow up materials for parents. You can access the handout at http://primaryimmune.org/wp-content/uploads/2011/11/SCID_FLYER_11-11_revised.pdf .
Posted in Uncategorized.
– September 26, 2011
On Tuesday, August 30, 2011 IDF volunteer Yvette Shorten and IDF Board of Trustees Member Carol Ann Demaret met with the Chair of the Texas House Public Health Committee, Representative Lois Kolkhorst, to discuss newborn screening for SCID in the state. Rep. Kolkhorst was already well informed of the importance of SCID newborn screening, but she listened to attentively to Carol Ann and Yvette as they shared their stories of personal experience with SCID. After their accounts, Rep. Kolkhorst voiced her complete support for the addition of SCID screening to the Texas newborn screening panel.
Yvette Shorten, Rep. Lois Kolkhorst, and Carol Ann Demaret
As Yvette remarked following the meeting, “We left feeling very positive that Newborn Screening for SCID will be fully implemented in Texas.” Building rapport and making a personal connection with the Chair of the Public Health Committee will hopefully help to secure the funding appropriation necessary to allow Texas to start screening for SCID across the entire state. Thank you to the wonderful advocacy efforts of these dedicated SCID moms!
If you are interested in advocating for SCID newborn screening or would like to share the activities you are involved in with your own state, please comment below or fill out the CONTACT form at the top of the screen. To learn more about the SCID Newborn Screening Campaign, check out the website! http://www.primaryimmune.org/advocacy_center/scid/scid_newborn_screening_initiative.asp
Posted in Texas.
– September 16, 2011
