Archive for the ‘Newborn Screening’ category

Newborn Screening Advisory Committee Recommendation: Add SCID

October 7th, 2014

CNewborn Screening consists of critical laboratory and bedside tests done on newborns to see if they have certain inherited diseases.  Early detection for these specific diseases is critical for the babies, doctors and parents, because delays in treatment can result in irreversible developmental delays, sickness and even death.  With the passage of HB 2491 last year, the legislature asked the ADHS to consider adding Severe Combined Immunodeficiency (SCID) and Krabbe Disease to our newborn screening panel (we currently test for 28 disorders).

Wednesday afternoon our Newborn Screening Advisory Committee met to consider the costs and benefits of screening for SCID  and Krabbe.  The Committee recommended that we change our rules and begin testing for SCID.  If I decide to proceed with their recommendation, we’d also need to get the authority to increase our testing fee by $10 so we can pay for the testing costs. Because the screening test for SCID is so reliable, we’d only need to test the first sample (taken at the hospital).  We wouldn’t need a second follow-up sample like we do for the other 28 disorders.  The committee didn’t make a recommendation one way or the other about Krabbe Disease.

We’re currently working on a rule revision to require hospital testing for heart defects (critical congenital heart defects) to our testing requirements.  Some babies born with a heart defect look healthy at first but have complications later.  Newborn screening (by pulse oximetry) estimates the amount of oxygen in a baby’s blood, and can identify some of these babies early so they can get quicker care and treatment.

Over the next couple of weeks I’ll examine the data, evidence, and the Advisory Committee’s recommendation.  We’ll   include any decision to add SCID and/or Krabbe in the draft rules already underway to add critical congenital heart defects.  We expect to publish the draft rules in early November.

ADHS Receives March of Dimes National Award

September 18th, 2014

Newborn Screening Rulemaking

The ADHS won the first-ever Newborn Screening Quality Award from the March of Dimes this week.

We were recognized for shortening the length of time it takes bloodspot samples to get from Arizona hospitals to our State Laboratory, setting and achieving a target of receiving 95% of samples within 72 hours, and for establishing a policy of full transparency for the length of time it takes Arizona hospitals to send newborn blood samples to our lab.

The March of Dimes established the new award in honor of Dr. Robert Guthrie, known as “the father of newborn screening” for developing the first mass screening test for babies 51 years ago. The awards recognize leadership in establishing culture of safety as a way to avoid those deadly delays in states’ newborn screening process.

When a reporter from Wisconsin wrote a story about newborn screening turn-around times around the country last December, we found out that we had room for improvement when it comes to the time it takes newborn metabolic screening samples to get from AZ hospitals to our Lab.  Basically, it was taking too long for the samples to be screened for life threatening and time-sensitive disorders… so we set a goal of getting 95% of the samples to our Lab within 3 days by July 1, 2014.  When we started the project back in December 2013 we were receiving 67% of our samples in 3 days, 20% in 4 days, 9% in 5 days, 4% of the samples took more than 5 days to get to our lab.

We met our goal a month early.  As of this summer, we’re receiving 99% of newborn bloodspot specimens within 3 days with an average transit time of just 1.38 days in June.  The Newborn Screening Transit Time Project team did a fabulous job tackling training for hospitals, eliminating issues with delivery contractors and ensuring that everyone involved is on the same page.  Well done.

I’d also like to thank the March of Dimes for their leadership in improving birth outcomes around the country- and our fabulous Arizona Chapter for their partnership over the years.  By the way- you can volunteer for the local chapter or participate in local March of Dimes events by visiting the Arizona Chapter website.

Partnering to Improve a System

August 11th, 2014

120_blogThursday we celebrated our recent statewide success at reducing the time it takes newborn screening blood spot samples to get to our State Laboratory for testing.  Over the last 8 months, Arizona has improved our blood spot turn-around time to among the best in the country.

Folks from dozens of hospitals came to a celebrate our collective success.  We had a “thank you” ceremony Thursday for the hospitals that met our statewide goal of getting 95% of blood spot samples to the Lab within 72 hours.  Hospitals received a special plaque – so look for it the next time you’re in sitting in a waiting room waiting for someone to have a baby!  Everyone who was at the celebration talked about how important it was and that they were excited to be part of the project.

Newborn Screening Team Beats Deadline

June 13th, 2014

baby hearing testBen Franklin said: “Critics are our friends, they show us our faults“.  A true statement.  When a reporter from Wisconsin wrote a story about newborn screening turn-around times around the country, we found out that we had room for improvement when it comes to the time it takes newborn metabolic screening samples to get from AZ hospitals to our Lab.  Basically, it was taking too long for the samples to be screened for life threatening issues… so I set a goal of getting 95% of the samples to our Lab within 3 days by July 1, 2014.

I’m happy to say that we met our goal a month early.  During May there were 6,948 babies were born in Arizona. More than 96% of newborn bloodspot specimens got to our Arizona State Laboratory within 3 days.  In the last 6 months we’ve achieved a 30% increase in the number of specimens that got to our Lab within 3 days.

The Newborn Screening Transit Time Project team did a fabulous job tackling training for hospitals, eliminating issues with delivery contractors and ensuring that everyone involved is on the same page. Thanks to Celia Nabor for her excellent leadership and the whole team’s work to achieve the goal one month earlier than asked.  Well done team.

Improving Newborn Screening Turn-around Times

March 24th, 2014

Last December I wrote about an investigation done by a reporter from the Milwaukee Journal Sentinel about newborn screening program turn-around times across the country.  When I saw where Arizona stood relative to the other states in the article, we set a new goal of making sure that our Lab gets 95% of all newborn screening bloodspots from hospitals within 3 days of collection.  Our Lab team immediately responded to the challenge, creating a task force to help the 43 Arizona birth hospitals reach the statewide goal.  For the past 3 months the task force developed an aggressive project plan including educational webinars, hospital site visits, increased courier services and a new webpage.

This week we launched the transit time webpage that features hospital performance reports- providing  soon-to-be parents and the general public with information about progress towards the goal.  The site also recognizes 4 hospitals as top performers for their respective level based on the January 2014 reports- Little Colorado Medical Center, Banner Ironwood Medical Center, Flagstaff Medical Center, and St. Joseph’s Hospital and Medical Center.

Special thanks to Celia Nabor, Sondi Aponte, Isaac Lee, Gannon Wegner, Jesse Lewis, Kirsten Hushagen, Rose Halberg, and Ward Jacox for their continued commitment to the success of the project.

Midwife Practice Collaborative

March 4th, 2014

Our Licensing team promotes and protects public health and safety by addressing quality of care issues.  Last week we hosted a forum for our licensed midwives to learn more about our programs and resources to bring them up to speed on our newest initiatives related to maternal and child health so they’ll have the latest tools in their practice toolkit.  About 50% of our licensed professional midwives attended.  

The Bureau of Special Licensing’s Don Gibson took the lead and coordinated presentations on various topics related to maternal and fetal health.  Vital Records presented on how to file a birth certificate, time-frames, and birth data.  Our Birth Defects Program shared data and resources on the prevalence of various asymptomatic congenital conditions.   Newborn Screening covered the various statutory requirements that all newborn children and families are required to be counseled on, and our Immunization Program, Breastfeeding Program, Nutrition and Physical Activity, and Women’s and Children’s Health shared a host of free resources, 24-hour hotlines, and best practices.  

Claudia Montes presented an updated online reporting form.   Special thanks to the presenters: Bianca Soto, Dianna Contreras, Sondi Aponte, Gidget Carle, Fran Altmaier, Dana Goodloe, Anne Whitmire, Mary Ellen Cunningham, Claudia Montes, and Don Gibson.

Newborn Screening Turn-Around Times

December 13th, 2013

An investigative article published by the Milwaukee Journal Sentinel a couple of weeks ago has triggered a state by state assessment of newborn screening programs across the country.  Arizona is no exception.   Our newborn screening and maternal and child health teams have been reviewing our procedures and looking for ways to improve Arizona’s performance. 

For example, several Arizona hospitals are under-performing when it comes to the timeliness of submitting newborn blood spot samples to our State Lab for testing. Last week, our Licensing team sent letters out to each of the birthing hospitals reminding them that they need to have solid policies and procedures in place to get their newborn screening samples to our lab promptly after they’re collected.  

Our laboratory team is in the process of planning some technical assistance visits to the hospitals.   We’ll also be setting up some training to make sure that all the hospitals know that our contract with FedEx for overnight priority pickup covers the entire state and won’t cost them anything to use.  I’ve set a goal for us to receive 95% of all samples in the lab within 3 days of collection- and we’ll be posting hospital turn-around times on our website quarterly- using transparency to drive better compliance.  We’re also developing a plan to run priority tests during 3-day weekends.  

Our Newborn Screening Advisory Committee also met this week.  We discussed our proposed newborn screening fee increase as well as whether we should add new tests to the panel in the future.  We haven’t made any decisions about whether to include new tests (and associated fees)…  but we’ll be reviewing the comments that we’ve been receiving as we prepare to make decisions in the coming weeks.

Newborn Screening Rulemaking

November 16th, 2013

Our Newborn Screening Program ensures that each newborn is tested for 28 inherited disorders and hearing problems.   The goal is to help kids avoid illness, developmental delays and even death by quickly identifying problems and swiftly letting their doctors know so they can implement interventions.  On any given day our newborn screening team tests from 600 to 1,500 bloodspot samples for each of the 28 disorders.

Our demographics team verifies the results and ensures that results are sent out.  Our case management team follows up on about 140 potentially positive results (including hearing) each week and works with pediatricians, clinical specialists and families. The program allows hundreds of families have the opportunity for their newborn to receive the early treatment, intervention and support services that will allow them to lead normal lives.

We published new proposed rules for the program back in August, updating the fees that we charge for these services.  The fee for a first specimen is $30 and we’re proposing to keep that the same.  We’re proposing to change the fee for the 2nd specimen from $40 to $65. We’re still accepting comments  on the proposed Rules electronically.  We’ve gotten a fair number of comments asking us to add Critical Congenital Heart Defects to the panel.  While that condition isn’t included in the proposed rules, we’re seriously considering adding it to the list.  The procedure uses pulse oximetry (measuring oxygen levels in the blood through the skin) to identify some infants with critical structural heart defects.

Last year the CDC recommended that all newborns be screened for critical congenital heart disease using pulse oximetry.  Congenital heart disease occurs in approximately eight in every 1,000 live births…  and if left undetected, kids are at risk for the development of serious complications within the first few days or weeks of life.  For more info, check out CDC’s latest  Morbidity and Mortality or MMWR report which highlights Newborn Screening and Critical Congenital Heart Disease.

Please let us know if you’d like us to add Critical Congenital Heart Defects to the panel by commenting on-line during November.

50 Years of Newborn Screening

September 29th, 2013

The first newborn screening test was developed in 1963 by Dr. Robert Guthrie to test for phenylketonuria, commonly known as PKU. Since then, scientists have developed more tests to screen newborns for a variety of severe conditions.  This year, the nation celebrates 50 Years of Newborn Screening. The State of Arizona currently screens for 29 disorders, including hearing loss.

The Office of Newborn Screening launched a new webpage at the beginning of the year dedicated to celebrating this important milestone, as well as raising awareness of newborn screening by sharing information and family stories. Each month, a different disorder or aspect of newborn screening has been featured on the page. You can learn about Sean, who was born with Glutaric Acidemia Type 1 (a metabolic disorder which can cause brain defects if left untreated), or 9-year-old Kaidan with hearing loss due to Waardenberg Syndrome. The page also has great resources about many of the diseases we screen for in Arizona, including Cystic Fibrosis and Congenital Hypothyroidism.

Adding to the celebration, September is Newborn Screening Awareness Month, and the Office of Newborn Screening has teamed up with Baby’s First Test to participate in their “Be Bold, Wear Gold” campaign by wearing gold pins. By sharing newborn screening information through ADHS’ Twitter, including participating in and retweeting important messages from the national chat with Dr. Richard Besser about newborn screening, the Office of Newborn Screening continues to push their message and share the importance of screening for all babies.

Lab Website Makeover

May 22nd, 2013

Our Lab just finished a major website makeover.  Check out the new Laboratory landing page which will lead you to Newborn Screening, Microbiology, Chemistry, and Lab Licensure and Certification.