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An Update on SB 2194, testing all Hawaii Newborns for Critical Congenital Heart Defects

Guest Blogger: Don Weisman, Hawaii Government Relations Director

Thanks to AHA You’re The Cure advocates, SB 2194, the bill that would require Hawaii birthing centers to perform a pulse oximetry screening to check for critical congenital heart defects prior to discharge, continues to move toward final passage. The bill was passed by the House Finance Committee on April 3 with no major changes to the pulse oximetry screening section (a second unrelated section was added to the bill during the committee hearing on which the AHA took no position). The bill now heads to the House Floor for a vote before it moves presumably to a conference committee where differences between the House and Senate version of the bill will be worked out. If agreement can be achieved there, the bill will move to the Governor for final passage into law.

The AHA is also supporting two other tobacco-control related bills which continue to advance. SB2495 would restrict the use of electronic cigarettes to places where only regular cigarettes are allowed, thereby protecting non-smokers from being involuntarily exposed to the nicotine and other particles and chemicals emitted as part of e-cigarette aerosol. SB 2496 would increase the tax on “other” tobacco products (all tobacco products other than cigarettes) to a rate of 85% of wholesale cost. Other tobacco products are currently under-taxed in relation to cigarettes making them more appealing to youths. The CDC has reported a sharp uptake in usage of those products by youths as cigarette prices have increased. Increasing taxes has been proven to reduce usage by youths. An as yet undetermined portion of the revenue from the tax increase would be earmarked for the Hawaii Tobacco Prevention and Control Trust Fund to be used by community programs to reduce tobacco consumption.

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Legislative Spotlight: House Bill 2491

Guest blogger: Nicole Olmstead, Arizona Government Relations Director

Being a Government Relations Director for the American Heart Association/American Stroke Association, I have the opportunity to work on very important pieces of legislation every day.  From increasing access recreational facilities to improving systems of care, the work we do truly helps improve the health of my community.  Every once in a while, I get the chance to work on our most vulnerable population, babies. 

During this legislative session, we have had the opportunity to work on House Bill 2491 which will require that all newborns are screened for congenital heart defects using a simple, inexpensive, non-invasive test known as pulse oximetry. 

At this point in the legislative session, we have had a few volunteers testify on this issue at the Arizona capitol, including one of our youngest volunteers, William Mueller.  William, a 9 year old born with 5 congenital heart defects, has spoken in both the Senate and House Health committees asking the Legislature to protect Arizona newborns by voting yes for this legislation.  We think he might have a future as a lobbyist for the AHA.  Please see his interview here. Go William! 

Currently, House Bill 2491 is in the final stages of becoming a law.  Please visit here to support requiring pulse oximetry as a screening requirement to ensure its passage.  Your legislators want to hear from advocates like you!

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April 28th is CHD and Pulse Ox Awareness Day at the State Capitol in Harrisburg!

We invite you to join us on April 28th at the State Capitol in Harrisburg for CHD and Pulse Ox Awareness Day!  Children with Congenital Heart Defects (CHD), their families and other volunteer advocates will join the AHA to raise awareness and generate support for House Bill 1420, legislation that would ensure all newborns are screened for CHD using pulse oximetry.

This legislation unanimously passed the House in November, so our focus turns to the Senate where we need YOUR help to push it across the finish line!

 

Below, we've provided links for the following:  Pulse Oximetry Fact Sheet, directions to the PA State Capitol, and parking in Harrisburg.  Lunch will be provided in the Capitol Cafeteria on the day of event.

Pulse Oximetry Fact Sheet

Directions to the PA State Capitol

Downtown Harrisburg Parking (Walnut Street Garage is recommended for parking)

Agenda at a Glance
9:30-10:00 – Registration
10:00-11:00 – Training
11:15 - Group Photo
11:30-Noon – Press conference
Noon-3:30 – Senate Meetings

Register today!  More information on the event will be forthcoming.  Please share this information with friends and family and encourage them to attend as well.  We hope you are able to join us on April 28th!

If you would like additional information or have questions, please contact:

Kim Ross at (717) 730-1706 or kim.ross@heart.org

Jen Ebersole at (717) 730-1766 or jennifer.ebersole@heart.org

 

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Saving the Lives of Montana Babies- Why You Should Care About Pulse Oximetry Screening

Guest Blogger: Amanda Andrews, Montana Government Relations Director

Imagine bringing home your newborn baby only to return to the hospital hours later with a baby who is barely breathing.  Unfortunately, this is what sometimes happens to new parents whose babies have undetected congenital heart issues.  This is a scary situation, but we can take steps to make sure we’re doing all we can to help these infants and families.

More than 12,000 babies are born in Montana each year.  Statistically, about 1 in 100 babies will have a birth defect, with heart defects accounting for almost 30% of those defects.  According to these statistics, at least 32 babies every year are born in Montana with a potentially deadly heart defect.  The good news is, these defects can often be caught and treated within the first years of life.  The first step to catching the defect is with a very simple pulse oximetry screening. 

More good news; most hospitals in Montana (74%) are already doing pulse oximetry screening on every newborn.  But, what about that other 26%?  The American Heart Association, along with the March of Dimes and the Department of Health and Human Services, are currently supporting an administrative rule that makes pulse oximetry screening mandatory for all newborns.  The cost of these screenings is relatively small and the test only takes about 45 seconds. This simple screening involves a small strap that goes around the baby’s foot to measure his or her heart rate and blood oxygen.  Most hospitals already have all the equipment they need to perform this simple test. 

What You Can Do

There are 7 hospitals in MT that do not currently screen all their newborns.  What if that is the hospital where your baby, or your niece, nephew, or grandchild is born?  Wouldn’t you want them to take the 45 seconds to perform this potentially lifesaving test? Public comment is being taken right now and we need you to tell decision makers you support this policy. Please click here and take the time to help protect all Montana babies.

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Recap of Arizona Lobby Day 2014

Thursday, January 30th was a big day for the American Heart Association! On this day, You’re the Cure volunteers and survivors stormed the Capitol in Phoenix to raise awareness about heart disease as well as advocate for life saving policies designed to make Arizona a healthier place to live.  Specifically, we urged lawmakers to support 3 bills – pulse oximetry screening for newborns (House Bill 2491), CPR in schools (Senate Bill 1162) and providing safe places for children to play (SB 1123 and 1336). We support adding pulse oximetry screening to the newborn screening panel to ensure that every newborn in Arizona is screened for critical congenital heart defects.  Similarly, we support requiring CPR training in schools as CPR is a lifesaving skill and we want to ensure that every student learns CPR to develop the next generation of lifesavers.  Lastly, we support providing safe areas for children to play by limiting schools’ liability when it comes to opening facilities for shared use by the community. 

Things change very fast at the Capitol, so we invite you to please visit here to contact your legislators today!

Thanks to our volunteers, Arizona’s Lobby Day was a successful event. Highlights from the day start with Advocacy training lead by Nicole Olmstead, followed by the personal story from Jane Powers, a survivor that was saved by CPR. Next, Molly Wright and Demaree Wilson graciously told their passionate stories that clearly illustrated first-hand experience why pulse oximetry testing for newborns is so important. Needless to say, there wasn’t a dry eye in the house.  Additionally, 3 television stations covered the festivities as more than 100 attendees — children and adults — learned Hands-Only CPR from local EMTs.

Thank you for supporting the AHA and policies that will make Arizona a healthier place to live.  Please remember to visit the action center regularly to stay up-to-date on legislative updates as well as stay in touch with your legislators.  Please consult our local Government Relations Director, Nicole Olmstead or me, if you are interested in future volunteer opportunities or if you have any legislative questions.

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Advocate Spotlight: Colter's Story

Bobbie Cross

Heart disease has forever changed our family.  My son, Colter, was born on November 17, 2011. I had a healthy and normal pregnancy. We were able to take him home 24 hours after, he passed all of the required health screenings and passed as a seemingly healthy baby boy. Unfortunately, the hospital neglected to do one very important test called the pulse oximetry screening.

3 days later we took him to his pediatrician for his first checkup. It was there we found out our beautiful new baby boy had a birth defect. The doctor heard a very loud heart murmur and chose to check his oxygen levels, they were bad. . He immediately made arrangements for us to see a cardiologist. 5 hours later we received the most terrifying news that our perfect angel was broken inside; he was diagnosed with a severe Critical Congenital Heart Defect called Truncus Arteriosus. Our son's heart defect was undetected until he was 4 days old and without surgery; he would die.

We went to Seattle Children’s that night and tried to prepare ourselves for the unknown. Colter was 11 days old when he had his first open heart surgery. After a long, complicated surgery; we were told they didn't know if he would make it through the night. His situation wasn't a day by day or hour to hour he was surviving minute by minute. He was in some pretty rough shape. 8 days later they were able to get him off of life support known as ECMO only to face more challenges.  Colter had contracted pneumonia in his right lung that was extremely resistant to antibiotics making it very difficult to manage.

December 17th Colter crashed, every medical intervention they tried wasn't working, and the infection was ravaging his tiny body.  They planned to remove Colter's right lung, but as a last minute decision chose to put him back onto ECMO. The Dr. told us our son was deteriorating, and this was their last ditch effort to save his life. The doctor told us there was a slim chance Colter would survive and he suggested us to say goodbye to our son. We said our goodbyes and waited.

1 hour later they came out smiling, no interventions were needed, by the grace of god he started improving little by little, minute by minute. It was a miracle even in the medical world! 10 days later we were discharged from the CICU and remained in the hospital for an additional month for antibiotic treatment.

We took home Colter with fulltime oxygen, a feeding tube, 24/7 continuous feeds, meds literally around the clock, less than 25% heart function and a lot of doubtful doctors. We were faced with a challenging first year, it was trying and exhausting. As a mother these were all challenges I welcomed. The Seattle team was sure Colter would be back, and believed the odds of him keeping his own heart were grim. Colter survived, and with every hurdle life threw his way he leaped it with grace. Colter is alive and well today, matter of fact if you didn't know his story you'd probably think of him as a normal kid.

Being a heart mom you deal with a variety of emotions but the 2 most prevalent would be fear and joy. Fear of the future, fear of the unknown, fear of his next surgery, and fear of death. But there's one thing that being a heart mom has taught me that is that our joys are greater than any fear of the future. When I think about surgery day that was the 1st time we got to see what Colter was made of.

At only 11 days old he showed us his tremendous amount of strength and his will and desire to live. I looked up the word, persevere it's defined as follows: To continue in a course of action even in the face of difficulty or with little or no prospect of success. Despite Colter's dips and turns for the worst he always seemed to persevere. His tenacity to live was something that was undeniable from the beginning.

After each scare it was always followed by great JOY.

I feel so honored to be able to share Colter's story, I hope to continue to raise awareness about the importance of the pulse ox screening. This needs to be done on all newborns before they are discharged to go home. We were very lucky that this test was taken as it saved Colter's life. I think all new mothers and fathers should be educated about what a simple, non-invasive and CHEAP test this is. I feel it's so important that we remember the statistics, 1 in every 100 birth a baby is born with some form of heart defect . Heart disease is the #1 killer of our babies in the United States. And lastly a child is 2x more likely to die from heart disease than ALL forms of childhood cancer combined. So we need to be taking advantage of our resources and technology Pulse Ox Screening is a no brainer! It saves lives, my son is proof of it.

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Snow Does Not Stop PA's Dedicated Advocates!

Pennsylvania Advocacy Day on February 3rd was ultimately cancelled when Mother Nature dropped 8 inches of snow on the state Capitol.  However, a small but mighty group of advocates made it into Harrisburg, even when the Capitol Complex closed.  We did find our smoke free champion for House Bill 1485, Representative Mario Scavello, on the job and he posed for a quick photo.

Our top policy priorities for 2014 are to protect all Pennsylvanians from the dangers of secondhand smoke (House Bill 1485) and ensure that all newborn babies in Pennsylvania are screened for Congenital Heart Defects (CHD) using pulse oximetry (House Bill 1420).  Please help us as we continue our vital work and raise your voice in support of these life-saving policies.  It's easy -- speak out today by taking action at http://yourethecure.org/aha/advocacy/actioncenter.aspx.

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Are You Ready, Hawaii?

It’s hard to believe that Hawaii starts a new legislative session Wednesday, January 15. We have been working hard to pass lifesaving policies this year but you are critical to our success. 

The American Heart Association's legislative agenda will include the following topics below:

• Reduce obesity by adding a fee on sugar-sweetened beverages to generate new revenue to help prevent obesity. Beverages with calories added like soda, energy drinks and sports drinks account for 15% of the non-nutritious calories in Hawaii residents’ daily diets. They are a leading cause of overweight and obesity and increase an individual’s risk for heart disease.  Revenue generated by the fee would specifically fund comprehensive community obesity prevention programs.

• Screen all newborns for congenital heart defects. We would like to require that all birthing centers in Hawaii perform pulse oximetry screening on every newborn prior to discharge. Pulse oximetry is a noninvasive, inexpensive screening tool that can detect if a baby has a congenital heart defect and help save babies’ lives.

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Pennsylvania’s Legislators Go Back to Work

Now that the holidays are over, state legislators will be getting back to work and the American Heart Association is gearing up to advocate for the issues that are important to all of you. We hope that this year, with your help, will be a great one with many successes.

This year in Pennsylvania, we are going to be focusing on the following issues:

Smoke-free Pennsylvania: Many people in Pennsylvania are still in danger from secondhand smoke exposure and we need to act quickly.  Help us protect the health of hundreds of thousands of Pennsylvanians.

Pulse Oximetry Screenings: When a baby is born with a Congenital Heart Defect (CHD), the emotional toll on family and friends is enormous, not to mention the financial toll of undiagnosed CHDs and its impact throughout the community. Early detection initiates early treatment, which saves lives.

We could not accomplish what we do without the efforts of our volunteers. So take the time today to send an email to your legislators on the issues listed above.

And don’t forget to register for your upcoming state lobby day!

Let’s get to work!

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A Season of Thanks for this Year’s Accomplishments!

Guest Blogger: Marc Watterson, Government Relations Director, Utah

During this Holiday season we often take time to reflect on the past and give thanks for what we have and what we have been able to accomplish. This past year we have had tremendous success here in Utah in working toward our 2020 Goal of improving the cardiovascular health of all Americans by 20% while reducing deaths by coronary heart disease and stroke by 20% by 2020.

Specifically we were able to make tremendous progress on pulse oximetry screening for newborns and the creation of a stroke hospital registry.

Pulse Oximetry (House Bill 276)

On the second to last day of the 2013 Legislative session the House and Senate voted to pass HB 276 - Newborn Screening for Critical Congenital Heart Defects.  Sponsors of the legislation Rep. Paul Ray and Sen. Ralph Okerlund worked long hours throughout the session to garner support for this bill, receiving near unanimous votes in the House and good support in the Senate. 

The AHA led a coalition of groups, including Moms with Heart, Intermountain Healing Hearts and the Utah Department of Health in providing committee testimony and background information.  The AHA recruited unpaid contract lobbyists who worked on making sure that the Utah Hospital Association and the Utah Medical Association agreed with the importance of the legislation.  The Utah AHA|ASA Board of Directors, various volunteers, and our Utah staff all were instrumental in driving conversations with legislators – including YTC volunteer Rebecca Weissinger who got more than 300 members of her small town to sign a petition to their representative and senator asking them to support the legislation. 

Next month keep an eye out for more information on the new Department of Health rules that create Stroke Treatment and Stroke Receiving Centers here in Utah and our annual Legislative Primer. As always, thank you for helping us to save lives here in Utah, and for being part of You’re the Cure!

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