Skip to content

Where the wind comes sweepin’ down the plain… and IDF volunteers raise awareness for SCID newborn screening

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.

Tagged with .

Be the First to Comment

By IDF_Emily – November 2, 2011

Texas Mom continues her Struggle to Raise Awareness for SCID Screening

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.

Tagged with , .

Be the First to Comment

By IDF_Emily – October 25, 2011

VA Advisory Committee votes YES for SCID Screening

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.

Tagged with .

Be the First to Comment

By IDF_Emily – October 13, 2011

Florida sees Movement In The Right Direction

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.

Tagged with .

Be the First to Comment

By IDF_Emily – October 5, 2011

Three more states start SCID newborn screening programs!

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!

 

 

To learn more about SCID newborn screening in Michigan, see the Michigan Department of Community Health press release

To learn more about SCID newborn screening in Colorado, see the Colorado Department of Public Health and Environment fact sheet

To learn more about SCID newborn screening in Connecticut, see the bill passed by the Connecticut legislature mandating newborn screening for SCID effective October 1, 2011

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!

 

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.

Tagged with .

1 comment
(click here to add a comment)

By IDF_Emily – October 3, 2011

NEW!-What does an Abnormal Screen for SCID Mean? A Guide for Parents

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.

Tagged with .

Be the First to Comment

By IDF_Emily – September 26, 2011

SCID Moms take their Stories to the Texas Legislature

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.

Tagged with .

Be the First to Comment

By IDF_Emily – September 16, 2011

Mini Update Time!

Just some brief updates about the status of SCID newborn screening in a few states –

 

 

 

 

 

 

 

 

IL SCID Newborn Screening Legislation
The Governor of Illinois officially signed the bill into law that will make SCID newborn screening mandatory on August 23, 2011!  The Illinois Department of Public Health has moved forward from the administrative side, initiating a public comment period on the addition of SCID screening.  So far, no public comments have been made.  It looks very likely that a pilot for SCID screening will begin in select hospitals in the state in January 2012!  Following the results of the pilot, SCID screening will be universally implemented across Illinois!   Wonderful news for the “Land of Lincoln”!

If you are interested to read the new law in Illinois, you can access the legislation text at http://www.ilga.gov/legislation/publicacts/fulltext.asp?Name=097-0532

CA SCID Newborn Screening Legislation
AB 395, Newborn Screening Program introduced by Assemblyman Pan continues to make its way through the legislative process.  There was a scare during the week of August 21 that the bill would die.  After successfully passing the Assembly, AB 395 was moved into the suspense file by the Senate Appropriations Committee due to its cost.  The suspense file is used by the Appropriations Committee to temporarily hold bills containing expenditures over a certain amount so that the Committee can get a better view of the fiscal impact of the bills.  If the newborn screening bill was not moved off the suspense file, it would not pass the legislature and become law.  IDF initiated an Action Alert letter writing and phone call campaign to request that the Chair of the Appropriations Committee and the Senate President pro Tem moved AB 395 from the suspense file.  On August 26, they did just that!  Now AB 395 will go to vote on the Senate floor and if it passes there, on to the Governor to sign into law!  Look for future updates on this legislation and Action Alerts when the bill comes up for vote.

You can sign up for Action Alert notifications at http://primaryimmune.org/action-alerts-sign-up

Nebraska Advisory Committee
The second week of August, the Nebraska Newborn Screening Advisory Committee made the recommendation to add SCID to the state’s newborn screening panel!  Now the newborn screening program is working to develop information so that the request for funding for SCID screening can go through the necessary review process with the legislature.  Nebraska has made that all important first steps and are actively making progress to see SCID newborn screening start saving lives in the state.

Keep this momentum going and work to make SCID newborn screening universal throughout all 50 states!

Please comment below and let IDF know if you are engaged in any SCID Newborn Screening Campaign activities in your area!

UPDATE for the Updates -Since writing this post, CA’s SCID newborn screening legislation officially passed the Senate Floor on August 31!  Now it is on to the Governor’s desk!  The Governor has until October 9 to take action.  He can either sign the bill into law or veto it before that date.  If he does not veto the bill before then, it will automatically become law on October 9.

Posted in California, Illinois, Nebraska.

Tagged with , .

Be the First to Comment

By IDF_Emily – August 26, 2011

One Year Update Report on SCID Screening

Below is the link to a report that the Health Resources and Services Administration submitted to the Secretary of Health and Human Services Kathleen Sebelius at the one year mark to her decision to add SCID to the Recommended Uniform Screening Panel.  The report gives an update on the status of implementation of SCID screening across the United States.

http://www.hrsa.gov/heritabledisorderscommittee/reports/CommitteeSCIDReport.pdf

Please comment below and let IDF know if you are engaged in any SCID Newborn Screening Campaign activities in your area!

Posted in Federal.

Tagged with , .

Be the First to Comment

By IDF_Emily – August 9, 2011

Texas Mom speaks out for Newborn Screening

Cameron Garcia

Jennifer Garcia lost her son when he was only nine months old in March 2011 from an infection that settled in his chest and developed into pneumonia before he was diagnosed with SCID.  What makes this story especially sad is that if Cameron Garcia had been born in another hospital in Texas that was participating in a SCID Newborn Screening pilot program, he would have been diagnosed with SCID at birth.  Then, Cameron would likely have been able to receive treatment early enough to save his life.

According to the Texas Department of State Health Services website, five hospitals are currently participating in the opt-in SCID pilot: St. David’s Medical Center (Main Campus), Austin, TX; St. David’s North Austin Medical Center, Austin, TX; Pediatric Associates of Austin, Austin, TX; Felici Pediatric Clinic, McAllen, TX; and Betta Pediatric Clinic, San Benito, TX.  Jennifer is bravely sharing her story with hospitals throughout Texas to encourage more to join in to the voluntary pilot.  She has succeeded in convincing the College Station Medical Center where Cameron was born, as well as several other local hospitals, to start testing babies for SCID later this year.  Jennifer is also working with a dedicated group of other Texas SCID volunteers to have SCID screening become a statewide policy in the state.  Carol Ann Demaret, Yvette Shorten, Alicia King, Racheal Sanders, and Eryn Matthews have all been advocating with policymakers in the state in an attempt to get SCID added to the Texas newborn screening panel.

To see Jennifer share her story with a local news outlet, please visit http://www.kbtx.com/home/headlines/CS_Mother_Pushing_for_SCID_Screening_in_Texas__126366573.html?storySection=story

You can learn more about the Texas pilot program at www.­dshs.­state.­tx.­us/­lab/­scid.­shtm

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.

 

Posted in Texas.

Tagged with .

Be the First to Comment

By IDF_Emily – August 1, 2011