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You’re the Cure at the Capitol State Lobby Day: Issues At A Glance

State Lobby Day is almost here!  These are the issues that we will be discussing with our lawmakers. 

We will have two asks this year, and have included talking points for each issue below.  We know that State Lobby Day this year will be as successful as all of our other years, and we cannot wait for our advocates to join us!

Ask One: Support HB 250/SB 296: Healthy Food Small Retailer/Corner Store Act with full funding

  • North Carolina has at least 349 food deserts across 80 counties, impacting over 1.5 million North Carolina residents in both rural and urban areas.
  • Communities without access to healthy foods are disproportionately impacted by diet-related diseases such as diabetes, cardiovascular diseases, and cancer.
  • Without easy access to healthy ingredients, families have a harder time meeting dietary guidelines for good health, such as eating fruits and vegetables and lowering fat intake.
  • North Carolinians across the state overwhelmingly support this effort: A recent poll found over 70% of registered voters support a state-funded Healthy Corner Store Initiative. After learning more information, support rose to 76%.
  • A healthy corner store initiative would: help make healthier food options more accessible, provide small business owners with marketing and technical assistance to stock and sell healthy foods, and create new markets for farmers and fisherman. 

Ask Two: Support increasing access to health care

  • Heart disease is the second and stroke the fourth leading cause of death in North Carolina.
  • Of adults (aged 18-64) who report having heart disease, hypertension or stroke, approximately 15% are uninsured.
  • Nearly half of the uninsured with cardiovascular disease cite cost as the reason they lack coverage; 36% cite a lost job or new employer.
  • The uninsured also report being unable to afford prescription drugs nearly four times more often than those who are insured (43% versus 11%).
  • Providing health insurance coverage will help people gain access to the care they need, which improves health outcomes.

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State Lobby Day: A Day to Remember

We are excited that you are joining us May 10th for the 2016 NC AHA You’re the Cure at the Capitol State Lobby Day.   To help you feel ready, we want to provide some important information about Lobby Day.

Lobby Day Schedule:

  • Registration check-in will open at 8:30 am at the Legislative Building Auditorium (link to map below). 
  • The training program will begin promptly at 9:00 am and conclude by 10:30 am so that you will be able to visit with your lawmakers. During the training we will go over the day’s events, our "asks" for the day, divide into your Lobby Day meeting groups, and have time to practice with your group. 
  • Lunch will be at the General Assembly Cafeteria in the Legislative Building. 
  • Rest area during the day is in the 1200 Court of the Legislative Building. Here you will find AHA staff, have a place to complete meeting evaluations, and take a break. 
  • All activities will conclude by 3:30 pm. 

What to wear and bring with you:

  • Visiting the legislature is an active day.  So wear comfortable shoes! 
  • Business attire is recommended, and we request that you wear something red. 
  • Also – don’t forget to check the weather – if it is supposed to rain, bring your umbrella! (Our event is rain or shine!)

Visiting the Legislature (Parking and Directions):

Staying in Raleigh:
If you prefer to come to Raleigh the evening before, here are some hotels in the downtown area that are convenient to the Legislature:

  • Marriot City Center: 500 Fayetteville Street, Raleigh NC 27601 - Phone: (919) 833-1120
  • Sheraton: 421 South Salisbury Street, Raleigh NC 27601 - Phone: (919) 834-9900
  • Holiday Inn (least expensive and closest to the Legislative Complex): 320 Hillsborough St, Raleigh, NC 27603 - Phone: (919) 832-0501

We know that was a lot of information to digest!  That is why we will wait until next week to send out information about the issues we will be talking with our legislators about.  When that information is up, you will be able to read about it by checking back with us on this post.

If you have questions about the logistical information, please contact Kacie Kennedy for more information.

 

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Governor Haley Signs Lifesaving Hands-On CPR in Schools Bill into Law

Governor Nikki Haley signed House Bill 3265 into law on Thursday, April 21, requiring all South Carolina students to learn hands-on cardiopulmonary resuscitation (CPR). This essential life skill will be incorporated into the already required high school health education curriculum and will ultimately benefit countless families by increasing the number of people with CPR proficiency.  Far too many people die suddenly from cardiac arrest who might have been saved if only those around them were trained to administer CPR.

Coleman Maness, a young, sudden cardiac arrest survivor and American Heart Association volunteer shared his thoughts. "We have been working so hard on this legislation for the past four years, and it is great to finally see the result of our hard work today. My life was saved by Bailey Barnes who performed bystander CPR, and this bill will ensure that other cardiac arrest victims will have a greater chance at survival." Coleman’s story of survival motivated a close friend, at the time a high school student, Sally Sheppard, to take action by working with a local legislator to have CPR in Schools legislation introduced during the 2012 session.

House Bill 3265 was sponsored by over 20 representatives and passed the House unanimously in 2015. The Joint Citizens and Legislative Committee on Children endorsed the CPR in Schools legislation.

Thank your lawmakers for passing this livesaving measure.

Nearly 424,000 people have cardiac arrest outside of a hospital every year, and only 10.4 percent survive, most likely because bystanders simply don’t know what to do. When administered right away, CPR doubles or triples survival rates. Teaching students CPR will fill the state with lifesavers, giving sudden cardiac arrest victims the immediate help they need to survive making our communities safer and improving South Carolina’s survival rates.

South Carolina becomes the 30th state to require hands-on CPR joining Alabama, Arkansas, Connecticut, Delaware, Georgia, Idaho, Illinois, Indiana, Iowa, Kentucky, Louisiana, Maryland, Minnesota, Mississippi, New Jersey, New Mexico, New York, North Carolina, North Dakota, Oklahoma, Oregon, Rhode Island, Tennessee, Texas, Utah, Vermont, Virginia, Washington, and West Virginia—all of which require CPR be taught to students in middle or high school.

The legislation was endorsed by 14 national and statewide organizations including the American Heart Association, South Carolina State Association of Fire Chiefs, South Carolina State Firefighters Association, and the South Carolina chapter of the American College of Emergency Physicians.

Be sure to send your thank you now.

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We Want You... To Come To State Lobby Day

Don’t worry!  There is still time to register for NC AHA You're the Cure State Lobby Day on Tuesday, May 10, 2016. But if you haven't already signed up - don't delay! Sign up here.

The event will begin promptly at 9am with an issues overview and advocacy training at the legislative building. The rest of the day will be spent meeting face to face with lawmakers and watching the House and Senate in action. We anticipate the day ending around 3:30pm.

This year, we will be advocating for the following policy initiatives:

  • Passage of the Healthy Corner Store Initiative with full funding.
  • Sharing the vital importance of accessing healthcare.

Register now! It's easy - just click here. Please register by Monday, April 25, as space is limited.

Final event details will be emailed in late April.

If you have any questions, please contact Kacie Kennedy.

We look forward to an exciting day with our advocates!

Sincerely,

Kim Chidester, Sarah Jacobson, & Betsy Vetter
Your North Carolina Advocacy Team

*PS - Want to make your registration easier? On the "detailed information" page, check the box beside the statement "carry forward" and your information will auto-fill on the next page of the registration form.

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Psst ... We Want To Tell You Something Big!

Throughout the year, we reach out with a "THANK YOU!" message to our advocates because we want you to know that your efforts are making a difference and saving lives.

We appreciate you every moment of every day.  We value those times when you rush through dinner with your family to make to make a council meeting in your community, and when you stand up and share your reasons for supporting an AHA policy. 

It means so much to us when you dedicate your time to State Lobby Day, meeting with legislators to reinforce support for active legislation.  And we can’t forget to thank you for driving to in-district Congressional offices to thank lawmakers for their support on AHA’s federal issues.  When you click to send a letter online it is incredibly valuable to our efforts and we genuinely appreciate your efforts. 

We know you have a choice about how you spend your time.  The fact that you invest in You're the Cure honors us - so this week, National Volunteer Appreciation Week, we honor you. Because YOU are our "why."

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Your Advocacy Team is Hitting the Road in 2016!

Mark your calendars to join us in 2016!  The North Carolina AHA Government Relations Team: Betsy Vetter, Sarah Jacobson and Kim Chidester will be traveling across the state (from Asheville to Wilmington!) to offer two additional in-person Advocacy Training Sessions.

In these workshops, we will offer education on our 2016 policy issues, an advocacy coaching session with a fun twist, and training on how to interact with your lawmakers.

Choose from the remaining workshop(s) you’d like to attend:

[Asheville] March 24, 2016 from 5pm – 7pm at Mission Health, Biltmore Park [First floor Community Room, 310 Long Shoals Rd, Arden, 28704]
[Wilmington] April 13, 2016 from 11:30 to 1:30p at Cape Fear Heart Associates [1415 Physicians Dr, Wilmington, NC 28401]

In these workshops, we will be offering an issues-training around the following policy initiatives:

  • Healthy Corner Store Initiative
  • Closing the Coverage Gap
  • Tobacco use prevention and cessation programs
  • Issue in the pipeline: Active Transportation

We hope that you will save the date that works the best for you to join us in person, and be sure to watch your email over the next few weeks for reminders about these trainings. If you would like to join, please RSVP to Kim Chidester.

Also, we will be offering another opportunity to engage alongside us as we meet directly with your lawmakers!  Please mark your calendar to join us on May 10 as we prepare for our 2016 NC Lobby Day!

See you soon, North Carolina!

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You're the Cure Advocates Go Red!

Go Red for Women is the American Heart Association’s campaign to raise awareness about women’s risk of cardiovascular disease and empower them to take control of their heart health.  It is a year-long campaign that culminates in February for Heart Month.  All of the markets within the Mid-Atlantic Affiliate celebrate with events throughout February and into the spring.

Advocacy work goes hand in hand with the Go Red For Women movement in many ways.  One way is our advocates work with their local government officials on proclamations that declare the first Friday in February as Wear Red Day.  In North Carolina, the town of Matthews, Huntersville, Cary, and Winston-Salem passed proclamations.  As did Spartanburg and Columbia in South Carolina, and Washington, D.C. 

The District of Columbia took their support of Wear Red Day to the next level with several local councilmembers taking to social media to express their office-wide support.   Councilmembers Brianne Nadeau of Ward 1, Jack Evans of Ward 2, and Charles Allen in Ward 6 sent out tweets to their followers of their offices dressed to the gills in their finest red. Councilmember Yvette M. Alexander emailed her constituents to urge them to be diligent in keeping their lives free of cardiovascular disease with helpful tips and facts. 

Another great example happened in Charlotte, North Carolina, when advocate Dr. Sandra Burke presented to the Mecklenburg County Board of Directors about heart health and continuing collaborative efforts to improve the health of the local community.  And here, the women of the Virginia General Assembly went red on 2/9 to bring awareness to heart disease.  

Go Red is a nationwide movement that unifies communities in prevention and education about the risk factors and warning signs of cardiovascular disease.  We are proud of the policies and changes you are influencing to make strides toward a world where we are free of heart disease and stroke.

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State Advocacy Committee Meets

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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