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State Advocacy Committee News Update

On November 21, the North Carolina American Heart Association Advocacy Coordinating Committee met to celebrate achievements, bestow advocacy honors and discuss policy priorities. The committee had much to celebrate this year including the passage of stroke center designation rules, advancement of the healthy corner store initiative legislation, and significant progress in local communities for healthy vending and tobacco control policies.

During the meeting, the committee recognized three individuals for their advocacy efforts that help advance the AHA mission.


  • The 2015 NC AHA Heart of a Friend Award was presented to Senator Don Davis for his leadership to advance HB 250/SB 296 Healthy Food Small Retailer/Corner Store Act.
  • The 2015 NC AHA Heart of a Champion Award was presented to Drexdal Pratt, Director of Health Service Regulation for his work for more than a decade to promote high impact policies that save lives including the Good Samaritan laws, stroke and STEMI transport protocols, stroke center designation, and pulse oximetry screening.
  • The 2015 Dr. Robert Blackburn Award for Advocacy Excellence was presented to Valerie King for her strong leadership in You’re the Cure.

This meeting also provided time to recognize the 2014-2016 Committee for their service and install the 2016-2018 NC AHA Advocacy Coordinating Committee. Juddson Rupp and Yolanda Dickerson will co-chair the committee for the next term. The committee works closely with AHA staff partners to provide strategic leadership for the NC AHA advocacy program and coordinates You’re the Cure activities including state lobby day.

Committee members spent time discussing the top priorities for 2016. Efforts will continue to advance HB 250/SB 296 with full funding to create a statewide healthy corner store initiative. In addition, You’re the Cure will be working to expand affordable health insurance to those caught in the coverage gap with no other options available to them. Locally efforts will continue to promote healthy vending policies local governments to ensure employees have access to healthy food choices while at work.

If you are interested in learning more about the NC AHA Advocacy Coordinating Committee, please contact Betsy Vetter.

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Dana Powell

Dana Powell, Mid-Atlantic Affiliate

On January 1, 2012, our family began the year with the birth of our second son, Asa Heard Karchmer. Like all babies, Asa delivered love and wonder into our lives. But those dreams were abruptly shattered on day two of Asa’s life. We came home from Watauga Medical Center in Boone, North Carolina and very soon realized Asa was struggling to breathe. We rushed back to the ER, then a few hours later, my husband and I followed the NeoNatal Intensive Care Unit (NICU) transport team as it rushed Asa to Brenner Children’s Hospital in Wake Forest, NC. In the ambulance, Asa received oxygen, IV infusions of antibiotics and antivirals for a possible infections, and prostaglandins to treat a possible cardiac condition. No one was sure what was causing our baby’s medical emergency. Asa was in a state of shock when he arrived at the NICU at 2:00am on January 3 and we were uncertain whether or not he would survive the rest of the night.

By late morning, Asa’s clinical picture started to become clearer. A pediatric cardiologist confirmed that Asa was born with a very special heart – one which, anatomically speaking, worked just fine in utero but couldn’t make the transition to this world without serious medical intervention. His diagnosis was a congenital heart defect known generally as coarctation of the aortic arch (or more specifically as an interrupted aortic arch): a severe constriction of the main artery leading from the left ventricle of the heart and delivering blood to the entire body. It is among the more common types of cardiac defects among newborns and is often accompanied by other cardiac defects (in Asa’s case, a ventricular septal defect, or VSD, and a bicuspid valve). The cardiologist explained that this particular defect was not a problem in utero where there is a bypass shunt (called the PDA) between the pulmonary artery and the aorta, connecting below the arch and the coarctation. This duct began to close a day or two after birth, as it does in all babies. Yet in Asa’s heart, as the PDA closed, the coarctation prevented blood flow to most of his body, putting him into severe crisis.

We sat anxiously for a week with Asa in the NICU, enduring what seemed like an endless battery of tests on his fragile body (spinal tap, EEG, extensive blood work, MRI, etc.) until he was stable enough for heart surgery. So when he was just one week old, Asa underwent open heart surgery to repair the coarctation and VSD. His chest was left open for four more days to accommodate internal swelling but otherwise, Asa pulled through like a superstar. A miracle. In another three weeks, he was nursing well and we finally took him home to his older brother, and friends, in the mountains where we live.

Our experience with Asa’s newborn cardiac crisis gave us emotional and spiritual resources that we would draw upon again, six months later, when he developed Infantile Spasms, a fairly rare and frequently devastating form of childhood epilepsy. Although Asa’s epilepsy remains a daily battle, he is now a lively 3 ½ year old, with a strong and caring heart. He is now the middle of three brothers, each unique, yet Asa’s more difficult journey has deepened and strengthened our own hearts, along with the hearts of everyone who knows him.

Blog content provided by Dana Powell, mother of Asa, and You’re the Cure Advocate

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Michele Coleman

Michele Coleman, District of Columbia

“This is not supposed to happen,” uttered Michele Coleman, remembering vividly the moment that cardiologists told her that her newborn baby was being rushed into open-heart surgery at seven days old. Little Dylan is Michele’s youngest of two sons, and quite the trooper. A resident of Washington, DC and planning to deliver Dylan there, Michele thought she had everything all mapped out. However, her OBGYN had different plans. Michele’s first son was delivered at a hospital in nearby Silver Spring, MD, and that is where her doctor wanted to deliver Dylan. So when the time came, Michele and her husband packed up their things, and off to MD they went - only a few miles away.

Delivery went smoothly, and doctors scurried off to take Dylan for his routine newborn screenings. All of the screening results came back normal, except for the pulse oximetry test. While waiting for doctors to explain what that meant, Michele had no reason to be overwhelmingly worried. Seven hours passed as they waited for a cardiologist to commute from Fairfax VA, to Silver Spring MD. Dylan was then taken for an echocardiogram, which revealed he was suffering from multiple critical congenital heart defects. Michele and her husband were dismayed to learn Dylan needed to be prepped for open-heart surgery.

“Plumbing issues, that’s how I like to describe Dylan’s heart,” simplified Michele. Dylan was born with an Interrupted Aortic Arch, Aortopulmonary Window, and a Patent Ductus Arteriosus. If not caught by the pulse ox test, Dylan would have passed away within 48 hours of discharge.

“In some ways, it's fate,” says Michele, thinking about how fortunate it was she gave birth in MD. At the time of Dylan’s birth in December of 2012, the state of MD had just passed a law requiring pulse ox testing for all newborns. Dylan was the first baby in MD since the law had passed to have had an abnormal pulse ox test reveal critical congenital heart defects requiring immediate treatment. Washington DC, where the Colemans live, had no such requirement.

After that it became Michele’s dream to not let another newborn leave the hospital without receiving this crucial lifesaving screening. She became a passionate You’re the Cure advocate with the American Heart Association, helping to gather and prepare other families to support the pulse ox issue as it came before the DC Council, and testifying before the committee hearing. She also works with the Pediatric Congenital Heart Association and leads the DC Chapter of Mended Little Hearts, a support group that provides encouragement and education to children and parents suffering from congenital heart defects.

Through the extraordinary advocacy of Michele and other parents like her, the Healthy Hearts of Babies Act was unanimously passed by the DC Council in June of 2015, and officially became an enacted law in September. As a result, every newborn in the nation’s capital will be assured to receive heart defect screening with pulse oximetry prior to leaving the hospital.

Having lived through this experience, Michele made it her life’s mission to educate parents, teach them what resources are available, and to decrease preventable deaths from critical congenital heart defects.

Michele brought Dylan with her to testify for the bill.  She says, “Having the pulse ox bill pass in DC is quite a victory. It made me proud to be able to stand up and say, this is my story.”

















<Many thanks to AHA You're the Cure intern Lauren Spencer for her help in developing this Advocate Story.>

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Pulse Oximetry Screening Rules - Closer to Reality

Many of you helped us in 2013 pass SB 98, Require Newborn Pulse Oximetry Screening.  The Governor’s signature of the law was a big step forward to ensuring all newborns were screened but the work isn’t done yet.  The law required rules to be written to implement screening all newborns with pulse oximetry.   In July 2014 temporary rules were adopted by the Rules Review Commission as the first step in implementation. 

On February 11, 2015 Dr. Gerri Mattson presented the proposed permanent rules to the NC Public Health Commission.  This work was the culmination of months of work by a large stakeholder group of professionals from all across the state.  You’re the Cure advocates Valerie King and Kristina Smith traveled to Raleigh for the Public Health Commission Meeting to hear the discussion.  As mothers of babies born with critical congenital heart defects, they know the importance of pulse oximetry screening for all newborns. 

Following Dr. Mattson’s presentation the Commission discussed the rules and the screening.  Both Valerie King and Kristina Smith provided expert testimony in support of the rules and shared their own personal stories.  Their personal experiences were moving and helped ensure the unanimous vote of the Commissioners. 

The next step in the process is for the rules to be voted on by the Rules Review Commission in March 2015.  If adopted by the Rules Review Commission the rules will be effective April 1, 2015.  We will be there to report on the vote. 

Many thanks to Valerie King and Kristina Smith for sharing their time and stories to make a difference for all newborns! 

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Pulse Oximetry Hearing Wows

Everyone in the chamber for DC’s pulse ox hearing listened incredulously as parent after parent shared heart wrenching stories of newborns diagnosed with critical congenital heart disease (CCHD) and how use of a simple test called pulse oximetry saves lives. Every year, more than 6,000 babies are born with some form of a critical congenital heart defect. In the District of Columbia alone, up to 10 infants may die or go undiagnosed every year due to a lack of screening.

“Every baby deserves the best chance of survival,” said mother Hilary Mehrkam, who testified in support of the Healthy Hearts of Babies Act of 2015 in the DC Council Committee on Health and Human Services on February 2.

Young CCHD survivors stole the show as they expressed their thankfulness for the use of pulse oximetry, without which they might not be alive today. Eleven-year-old Mirabel told Councilmember Yvette Alexander because of pulse ox she can now grow up to be an animal nutritionist. Tristan expressed his excitement about doing well in school and participating in cub scouts. Several others, too young to talk, were silent witnesses supporting the lifesaving assessment.

DC Bill 21-6, the Healthy Hearts of Babies Act of 2015 appeals to both parents and medical practitioners since, according to You’re the Cure Advocate Lisa Hom of Children’s National Medical Center, “No doctor wants to be the one who sends a baby home undiagnosed.”

Pulse ox screening is simple, painless, inexpensive, and non-invasive. Research suggests that by pairing this test with already routine prenatal measures, over 90% of newborn CCHD cases can be detected. Over 40 other states have already passed legislation mandating the use of pulse oximetry screening.

This legislation was co-introduced by the majority of the DC Council, but it is still important to write, call, or email your Councilmembers and tell them you support pulse oximetry screening. There are many benefits of this bill, but according to mom Amy Shalawylo, “the peace of mind is priceless.”

Click here to tell your legislators how important this bill is! 

 Pictured are invested parents and their children who testified before the DC Council at the hearing for pulse ox screening.

Take a moment and view this video our team put together from the day of the hearing.

<Special thanks to You’re the Cure Intern Kassie Crook for help developing this blog post>

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One Simple Test Could Save Your Baby’s Life

Congenital heart defects claim the lives of more babies than any other birth defect. Fortunately, there is now a test that can help identify more than 90% of heart defects, catching these life-threatening defects before the baby even leaves the hospital. This life-saving test is called pulse oximetry screening, more commonly known as pulse ox.

What are congenital heart defects?

  • The word congenital means “present at birth.”
  • Heart defects are structural problems that stem from the abnormal formation of the heart or blood vessels.
  • They occur when the heart fails to develop normally within the beginning stages of pregnancy.

 What is pulse ox screening?

  • Pulse ox screening is a non-invasive screening test that reveals 90% of heart defects—defects that often go unnoticed by other tests.
  • The test is done by simply placing light sensors on the baby’s hand and foot.  Once connected, the light sensors scan the baby’s blood oxygen levels and pulse rate—alerting hospital staff of any defects that may be present.
  • Pulse ox screenings are to be done after the baby has been out of the womb for at least 24 hours, but before the baby leaves the hospital. 

Why is pulse ox screening so important?

Congenital heart defects are often asymptomatic.  They can easily go undetected if they are not unveiled by newborn screenings.  And they can be life-threatening.

You’re the Cure Advocate Michele Coleman’s baby was born with a congenital heart defect—pulse ox saved his life. Michele shares the following:

“Pulse ox testing is critical to saving lives of babies with congenital heart defects whose condition would otherwise go undetected.  My son Dylan is one of these babies.  He had an unremarkable birth and was doing everything a baby was supposed to do.  He was eating fine, sleeping fine, he was not blue and he was not showing ANY signs of distress. 

He was lucky enough to be born in Maryland, which had just 2 months prior made the pulse ox screening mandatory for all newborns. 

The abnormal result of his test was the only indicator that he had a congenital heart defect. This test revealed that immediate open heart surgery was required, or he would not live.  Our family is eternally grateful to the staff and advocates of the AHA and other advocacy groups who are working to make pulse ox testing mandatory in all 50 states and the District of Columbia. I tell as many people as I can to make sure that their baby gets tested.”

Left undetected, heart defects that could have been treated at birth may develop into serious, life-threatening conditions.

This highly efficient screening is currently required in over 33 states. DC needs to join this movement to help prevent infant deaths. Contact your council members, urging them to make sure every DC baby gets screened with pulse ox before going home from the hospital.


<Special thanks to You’re the Cure intern Catherine Christiansen for help crafting this blog post>

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Joye Mullis

Joye Mullis, Mid-Atlantic Affiliate

As with all children, my son’s story began well before his birth.  I had a fairly easy pregnancy, tainted by a couple of scares early on, but then all appeared well at my 20-week ultrasound. 

I was healthy.  Baby was healthy.  Life was good.

At 28 weeks, I had a second ultrasound to check on the baby’s growth and that sent my husband, Jeramie, and me into a fast-moving downward spiral of more ultrasounds, stress tests, and worries.  By the time our son, Ethan, was born on March 8th, 2009, I’d had a total of five ultrasounds, all attempting to diagnose what would be two birth defects – one urological in nature and one orthopedic.

“But...” an OB assured us, “...all of his major organs are healthy and strong!”

However, about eight hours after Ethan’s birth we learned that the doctor was not completely right.  After struggling to nurse and being an overall quiet newborn - two major red flags that weren’t apparent to us first-time parents - it was discovered that Ethan had also been born with a critical congenital heart defect known as Pulmonary Atresia.

My post-partum nurse was bringing Ethan back to our room from his newborn screening when she noticed that “he just didn’t look right”.  She wheeled him back into the nursery, hooked him up to a pulse oximeter, and found that his oxygen saturation level was in the mid-60s.  That discovery began a flurry of activity, unbeknownst to us, which culminated in someone coming to our room hours later to tell us about the broken heart of our brand new son.

Ethan was rushed to Duke University Medical Center in Durham, North Carolina where he stayed for a total of nine and a half weeks, and where he underwent his first open-heart surgery at just three days old.  He had a handful of surgeries during that time – one of which was to implant a permanent pacemaker – and he also survived full cardiac and pulmonary arrest.

Over five and a half years, and three open heart surgeries later, Ethan is now thriving! His story is that of strength and resilience.  It's a story about rising above the brokenness and turning something so tragic into something so beautiful. It has taken a lot of work to get Ethan where he is today, and it all began with an observant nurse and a sticky light.  One simple test saved my son’s life and could do the same for countless others.

I’ve been known to say that the diagnosis of Ethan’s heart defect didn’t just break one heart – it broke three.  While Pulse Ox screening can’t take away the heartache of surgeries and complications, it can be the start of a lifetime of success for a baby born with a congenital heart defect.  It was for Ethan, and every baby born in North Carolina deserves that same start. 





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Remembering the Heart of a Friend

Last week, NC said good-bye to freshman lawmaker, Representative Jim Fulghum (R-Wake).  He passed away on July 19th after a short battle with cancer, at the age of 70.  Representative Fulghum was a retired neurosurgeon and his medical experience was a true asset to the NC General Assembly. 

During his short time in the General Assembly, Representative Fulghum was a champion for health issues.  The first legislation that he sponsored was a top priority for the American Heart Association, HB 105: Require Pulse Oximetry Newborn Screening companion bill to SB 98, which was signed into law on May 8, 2013.   He was also the lead sponsor for HB 827: Designate Primary Stroke Centers companion bill to SB 456 which was also signed by the Governor on the same day as the pulse oximetry screening law.  In addition, Representative Fulghum worked closely with tobacco control advocates both in 2013 and 2014 to ensure that e-cigarette/vapor products legislation defined these new products as a tobacco product, ensuring that these products would be included in NC’s tobacco-free policies, especially in our schools.

The NC AHA Advocacy Coordinating Committee recognized Representative Jim Fulghum for his commitment to strong public health policies of importance to the AHA on December 14, 2013.  Committee member, Peg O’Connell presented him with the NC AHA’s Heart of a Friend Award.  We all were looking forward to continuing our work with Representative Fulghum for years to come. 

“I can hardly believe that he has left us,” said Betsy Vetter, Sr. Government Relations Director.  “Representative Fulghum quickly distinguished himself as a true leader in the legislature.  It was such a pleasure to work with him on issues.  He was very thoughtful and knowledgeable.  North Carolina will miss him greatly.”

The AHA extends our heartfelt sympathies to the Fulghum family.  We have lost a health-hero. 

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Look At All We've Done

In the hustle and bustle of life, it seems there is always something that needs our attention.  Maybe it’s a lunch appointment, a meeting after work – did you remember to call your mom to wish her a happy birthday?

With so many things monopolizing our time, it begs the question: “Why do we do what we do?”  How do we choose to prioritize what gets our few free moments?  As a You’re The Cure Advocate, why do you choose to align yourself with our mission?  Do you know all that we have accomplished?

Today, we are bragging on you. Each action you have taken: every email you’ve sent to your lawmakers, every meeting you’ve attended has helped propel forward many vital pieces of legislation.  We want to tell how you’ve shaped our Mid-Atlantic Affiliate over the past few years.

2012 Legislative Session: tax on small cigars and all smokeless products was raised. Legislation was also passed to require insurance carriers to cover and reimburse healthcare providers for services delivered through telemedicine.
2013 Legislative Session: hospitals in MD are required to test newborns for critical congenital heart defects with pulse oximetry before they are discharged from the hospital. 
Thank you.

North Carolina:
2012 Legislative Session: required all high school seniors to be proficient in CPR in order to graduate high school.  In addition, a total of $2.7 million in non-recurring funding was secured for tobacco cessation and prevention programs. 
2013 Legislative Session: hospitals in NC are required to test newborns for critical congenital heart defects with pulse oximetry before they are discharged from the hospital.   Also signed into law was a policy that ensures designation of Primary Stroke Centers - ensuring stroke patients receive appropriate & timely care. 
Thank you.

South Carolina:
2012 Legislative Session: advocates were able to preserve $5 million for the Smoking Prevention and Cessation Trust Fund. 
2013 Legislative Session: hospitals in SC are required to test newborns for critical congenital heart defects with pulse oximetry before they are discharged from the hospital. Additionally, the Senate passed legislation requiring all high school seniors to be proficient in CPR in order to graduate high school.  This legislation is headed to the House of Representatives, and our SC advocates will be vital in ensuring this becomes law.
Thank you.

2012 Legislative Session: Governor McDonnell issued Executive Directive 4, developing an implementation plan for pulse oximetry tests in hospitals. The House also required the Board of Education to develop PE guidelines for public elementary and middle schools.
2013 Legislative Session: Gwyneth’s Law was signed into law.  All high school students will be required to achieve proficiency in CPR for graduation – and all teachers must be proficient in order to achieve their licensure.  The state budget allocated $400,000 for 12-lead ECG’s for EMS, which helps to diagnose the most severe type of heart attack.
Thank you.

Washington, DC:
2012 Legislative Session: the DC City Council allocated $495,000 for tobacco control programs within the Department of Health.
2013 Legislative Session: the DC Telehealth Reimbursement Act of 2013 requires all payers to reimburse services rendered by telemedicine.
Thank you.

Advocates are driving more policies in the 2014 sessions!  Some say “It takes a village to raise a child.”  With You’re The Cure, it “takes a network to make a difference.” Each and every one of you has made a difference.

Thank you for giving your heart.


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Jodi Lemacks

Jodi Lemacks, Virginia

In June of 2003, my third child, Joshua, was born via c-section.  Diagnosed with a Critical Congenital Birth Defect (CCHD) before birth, he was immediately whisked away to the hospital next door for his first of three open heart surgeries, without me even getting a glimpse of him.  The first time I saw Joshua the next day, it was hard to see the baby beneath the tubes and wires hooked up to him.  It felt surreal, like I couldn’t possibly be looking at my own baby. 

Joshua managed to survive the first surgery, but then struggled against infections and other complications for almost two months.  My husband and I, along with Joshua’s brothers and other relatives, stood by Joshua’s crib praying that he would make it, but mostly praying that this little guy would not suffer. Then one day, Joshua turned a corner—truly a miracle—and we finally got to bring Joshua home in August; he has made it through two more open heart surgeries since then.  Today, he is a happy, healthy nine-year old who loves baseball, golf, his family and life.

This scenario would have been entirely different if Joshua had not been screened for CCHD (in his case, before birth).  Working for Mended Little Hearts, a national non-profit that helps families who have children with heart defects, I know too well the devastating consequences of lack of screening for CCHD.  I get emails, and sometimes calls, from parents of babies who died or coded because their heart defect was not caught in time, and it breaks my heart. 

Joshua’s type of heart defect is 100% fatal if not caught—usually within a couple of weeks of life.  About half of the babies with this heart defect are not caught pre-birth, so screening soon after birth becomes vital and life-saving.  There are about 10,000 babies each year born with critical congenital heart defects that, like Joshua’s, can be caught through screening.  The sooner a baby is screened, the more likely the baby will get life-saving care.

Parents are looking to their hospitals and their states to help them.  Pulse oximetry screening, now mandatory in some states, is simple, non-invasive and inexpensive.   (For more information on pulse oximetry screening in states visit  This website was created by Kristine Brite McCormick who lost her baby, Cora, due to lack of screening.)  Most states already conduct newborn screening, and many are working to include pulse oximetry screening in their standard newborn screening panel.   In New Jersey, such a law saved at least one life within 24-hours of implementation.  

As of April 2014, in AHA's Mid-Atlantic Affiliate, You're the Cure advocates and Mended Little Hearts have helped make pulse oximetry screening for all newborns the standard of care in MD, VA, NC, and SC, and I am proud to have been able to support the process.


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