PulseOx

Lawmakers have been busy with the state budget and tax reform during the past few weeks.  This week the House of Representatives passed their version of the state budget.  We were disappointed that the House did not include any funding for tobacco use prevention programs, mirroring the Governor’s and Senate’s budget proposals.  The House did include $1 Million recurring funds for the NC Quitline, consistent with what the Governor had included.  Our work will now be to advocate with conferees to adopt the Senate’s budget proposal for $1.4 Million for the NC Quitline. 

In other budget matters, unfortunately no funding was included for the operations of the Stroke Advisory Council or stroke community education.

On the brighter side, this week the Senate voted unanimously to concur with the House changes to SB 530: Prohibit E-cigarette Sales to Minors.  Thanks to the strong legislative efforts of Representatives Fulghum, Stam, and Glazier we were able to successfully amend the bill to define tobacco-derived products, vapor products, and components of vapor products as tobacco products.  This change is critically important to maintaining consistency in North Carolina’s tobacco control laws, including our tobacco-free schools.  We will now be watching for Governor McCrory to sign this legislation into law.

As we look to the next few weeks, lawmakers will be completing their work on the state budget and tax reform.  This week, HB 998 Tax Simplification and Reduction Act (http://www.ncga.state.nc.us/Sessions/2013/Bills/House/PDF/H998v4.pdf) worked its’ way through the Senate and today passed second reading.  It is calendared for third reading on June 18^th.  Amendments continue to be made and once the bill passes the Senate, it will have to go back to the House for concurrence. 

We are just two weeks away from June 30 and lawmakers are pushing trying to finish their work. In the days ahead we will see them finish the state budget and tax reform.  It’s been a very busy legislative session and our successes are thanks to efforts of the You’re the Cure NC team.  Thank you for your dedication to helping moving the AHA mission through strong public health policies. 

There have been lots of great moments – from seeing Greg Olsen address the House Health Committee to witnessing Governor McCrory give Grace Sanchez a big hug at the pulse oximetry bill signing.  What was your favorite moment?

Write us and we will include your moments in our next blog post!

With heart from Raleigh,

Betsy Vetter, NC Director of Government Relations

Tragically, Emerson Rose is no longer with us, but she is still having a significant impact on the lives of babies born in our state. Her parents, Jason and Susan Smith of Clemson, SC, are working closely with You're the Cure to pass a bill that will help protect other infants born with Congenital Heart Defects (CHDs).

S.341, the Emerson Rose Act, won the unanimous approval of the SC Senate and is about to come before members of the House for a vote. It will make simple, noninvasive screening for pulse oximetry standard in SC birthing facilities, so no baby goes home without being checked for this life-threatening condition.

Make sure your House Representative knows you want this bill passed!

CHDs are the most common birth defect in the United States and the leading killer of infants born with birth defects. Babies born with CHD can appear healthy and normal in the newborn nursery. Since not all hospitals do pulse oximetry screening, these babies can be sent home with their families before the CHD is suspected. Sadly, more than 1,400 children with CHD do not live to celebrate their first birthday.

Click here to send your customizable letter for Emerson Rose and SC's future babies.

It has been a busy legislative session and intensity is building with each passing day.  Last week we held our breath tight while we fought to keep our smoke-free law strong and we let out a sigh of relief when SB 703 didn’t make the crossover deadline.  That said we have to remain vigilant that nothing else comes up that could weaken our smoke-free law.   

Last night the Senate released their budget.  Included was $1.4 Million in recurring funds for QuitlineNC, however there doesn’t appear to be any money for teen tobacco control prevention programs.  We are continuing to review the budget documents carefully for other AHA priority items.  You can access the Senate budget proposals at these links:  budget bill and associated money report. 

Legislative Priority Review:

Pulse Oximetry:  On May 8th, Governor McCrory signed SB 98: Require Pulse Oximetry Newborn Screening into law.  Now in our state, all newborns will have a critical congenital heart defect screening prior to being sent home from the hospital or birthing center.  The legislation passed unanimously and a big thank you goes out to our You're the Cure NC advocates who sent numerous emails and make phone calls to support this issue.  Our bill sponsors were:  Senators Andrew Brock (R-Davie), Louis Pate  (R-Wayne), Josh Stein (D-Wake) and Representatives Jim Fulghum (R-Wake), Mark Hollo (R-Alexander), Paul Stam (R-Wake) and Craig Horn (R-Union). 

Tell your lawmakers Thank You for helping SB 98 get signed into law!

Primary Stroke Center Designation:  On May 8th, Governor McCrory signed SB 456: Designate Primary Stroke Centers into law.  This legislation ensures that primary stroke centers in NC are those facilities that have national primary stroke center accreditation (Joint Commission or equivalent) and that this information will be made known to the public and EMS statewide.  The AHA considers primary stroke centers as the cornerstone of the state's stroke systems of care.  Our bill sponsors were:  Senators Louis Pate (R-Wayne), Trudy Wade (R- Guilford), and Stan Bingham (R-Davidson) and on the House Side:  Representatives Jim Fulghum (R-Wake), Mark Hollo (R-Alexander), Becky Carney (D-Mecklenburg), and Debra Conrad (R-Forsyth).

Tell your lawmakers Thank You for helping SB 456 get signed into law!

Tobacco Control Program Funding:  In the Governor's budget $1 Million of recurring funding was included, but this is a 94% cut in this funding from where we were in 2011 when the state provided $17.3 Million for these important programs.  It is important to note that each year NC receives Master Settlement Agreement funds that can and should be used for these programs.

Smoke-free NC:  Just this week, health advocates across the state banded together to stop SB 703 introduced by Senator Buck Newton (R-Nash).  This legislation would have limited the regulation of outdoor smoke-free policies in the state, including on our community college campuses.  The legislation would have repealed numerous local ordinances that have passed including the smoke-free ordinance at Wrightsville Beach which was on the November ballot there approved by the citizen voters of the beach community.  It would have also reversed over 50 community college smoke-free/tobacco-free ordinances. 

Funding Stroke Advisory Council and Stroke Community Education:  In partnership with the Justus Warren Heart Disease and Stroke Prevention Task Force, we are advocating for $50,000/annual funding for the Stroke Advisory Council and $400,000 for stroke community education.  These sometimes appear in the special provisions of the budget, so we will be watching closely.

Please stay tuned to this blog and your email for more information! 

With Heart,

Betsy

Governor Pat McCrory signed into law lifesaving legislation, Senate Bill 98, on May 8^th requiring screening for Critical Congenital Heart Disease (CCHD) via pulse oximetry.  North Carolina YTC volunteers and CHD parents, Eric Sanchez (and daughter, Grace), Stephanie and Joel Linn, and Crystal Darak were in attendance.

Congenital heart defects account for 24% of infant deaths due to birth defects and more than 1,400 babies with CCHD do not live to celebrate their first birthday. In the United States, approximately 4,800 babies born every year have one of seven critical congenital heart defects.  Infants with one of these CCHDs are at significant risk for death or disability if not diagnosed and treated soon after birth.

Studies show that pulse oximetry screening, in conjunction with current screening methods, greatly improves the likelihood of detecting life-threatening heart defects in infants.

North Carolina is one of only twelve states to enact pulse oximetry bills to ensure babies born with heart defects are screened and receive appropriate care.

This is an exciting day for North Carolina as families will be impacted for many years to come families who won't even know their baby's life was saved because this law was put into place. The passage of SB 98 means that every single newborn in North Carolina will be screened for congenital heart defects (CHD) before they leave the birthing facility. Standard pulse oximetry screening will help identify the 8 out of every 1000 babies born with CHD, so no baby goes home from the hospital with an undetected CHD. That is worthy of celebration!

You're the Cure advocates were key in moving this legislation forward to completion, and we thank YOU for your role. It's a very big deal for some very little hearts!

Take the time to send your lawmakers a thank you letter today!

This week by unanimous vote, the NC House approved SB 98 Require Pulse Oximetry Newborn Screening and SB 456 Designate Primary Stroke Centers.  The bills, having won the approval of the General Assembly have now been presented to the Governor, who has 10 days to decide to sign, veto or take no action.  If the Governor signs or takes no action on the bills within ten days, the bills become law.   We are very close to achieving success! 

You’re the Cure advocate, Valerie King, wrote to tell us how her daughter Greta felt about the passage of SB 98:

We saw the news story that the bill passed and Greta asked, "Mommy does it mean we win?" I replied, "Gretta, it means that all of the new heart babies born win. Do you remember when we went to Raleigh?"

"Yes, when I told those old people about my special heart, to save babies and got to play with all of my heart friends?" was her answer.

I said, "Yes sweetie this is why we did that."

That sweet little girl made me cry when she said, "I am glad I told about my special heart. I hope more heart babies get to tell their story and be on TV like me. Cause it was fun!"

Valerie continued, “The Pulse Ox bill passing and becoming a law elates me in ways I can't describe. I am proud to have been a small part is this legislation to help save babies. I am humbled to have been listened to by my Representative (Mark Hollo) and Senator (Pete Brunstetter). I am thankful for the rest of the legislators that worked on this with our team.”

Eric Sanchez had this to say:  

“I am ecstatic with the passage of SB 98.  I am convinced that like Tennessee and New Jersey, a baby in North Carolina will soon be saved once Governor McCrory signs this important piece of legislation.  My daughter, Grace, was lucky she survived being discharged without a pulse oximetry screening.  SB 98 makes it so that “luck” is no longer required for the detection of critical congenital heart defects; North Carolina has recognized that pulse oximetry saves lives.”

As advocates we have been working on stroke systems of care legislation since 2005 and SB 456 is an important step forward. Libby Puckett, wrote to say, “Congratulations !!  What a lot to accomplish - thanks to all who helped achieve these goals for all of NC.”  With stroke the 4^th leading cause of death and a leading cause of disability among North Carolinians, this legislation provides the cornerstone for our stroke system of care. Everyone should be able to access the high quality stroke offered by primary stroke centers and know which acute care hospitals have been certified as a primary stroke center.

To all our advocates, I want to say thank you – your actions are making a difference and saving lives! With Heart,

Betsy Vetter

For this legislative update, we have some exciting news regarding one of our top federal legislative priorities, National Institutes of Health Funding.  At the state level, we have been very busy seeing positive movement on our top issues.  As always, thank you for your efforts and please stay tuned to your email for more information and alerts so you know when we need your help!

Federal Update:

Last week we learned that Senator Richard Burr has co-authored a “Dear Colleague” letter with Senator Casey of Pennsylvania to urge their peers to support a strong commitment to NIH funding.  Senator Burr is showing great leadership on this issue.  Please send Senator Burr a thank you message and then, ask Senator Hagan to sign on to the letter. 

Thank Senator Burr: http://www.burr.senate.gov/public/index.cfm?FuseAction=Contact.ContactForm

Ask Senator Hagan to sign onto the Casey-Burr Letter: http://www.hagan.senate.gov/contact/

State Update:

SB 98: Require Pulse Oximetry Newborn Screening –passed the Senate unanimously and has now been assigned to the House Health Committee.  We are making great progress and have had unanimous votes showing lawmaker support.   Now we just need to get one chamber to take up the others’ bill and then drive this on to the Governor!

SB 456: Designate Primary Stroke Centers –passed the Senate on Thursday unanimously!  Senator Pate did a brilliant job presenting the legislation on the Senate Floor.  Next, it will be read into the House and assigned to a House Committee.  More to come!

Tobacco Control Program Funding:  We have been continuing to work on this issue talking with top Senators involved with the budget process.  Now that the Governor has presented his budget and we have passed tax day, the Senate is focusing heavily on the state budget.  We expect that the Senate will introduce their budget by mid-May. 

Bills of Concern:  SB 612, SB 703, HB 683 - all have preemption provisions.  Specifically, SB 612 has a provision that would result in broad preemption; SB 703 rolls back on smoke-free law as it relates to outdoor spaces and community college campuses; and HB 683 has what is being called the anti-Bloomberg provision because it would prohibit ordinances which would regulate beverage cup sizes.   These bills could stop local communities from implementing policies to protect their citizens.  At this time we are assessing these bills and working closely with partners to determine next steps. 

Learn more about what preemption means:  http://publichealthlawcenter.org/topics/other-public-health-law/preemption-public-health.   

If you have questions, please contact me.  Thank you for your support.

Betsy Vetter
NC Director of Government Relations

Tabitha Haizlip, North Carolina

On August 30^th 2012 our eight day old son, Broden, suddenly stopped feeding.   This was unusual as he had been a big eater until that time.  We made an appointment with the pediatrician to have him examined right away. While examining Broden the doctor discovered an unusually low body temperature along with a rapid heartbeat.

We were sent from the doctor’s office to Brenner Children’s Hospital in Winston Salem, NC for an echocardiogram.   Once we arrived Broden was immediately placed in a room for evaluation where medical personnel began administering tests while inserting IV’s into our baby boy.  We impatiently waited outside the room for a diagnosis.  Within minutes, we were informed our son was born with severe aortic coarctation and his condition required immediate intervention.  His tiny heart was beating 256 beats per minute as he struggled to breathe taking 96 breaths per minute. We also learned his lactate level was causing the organs in his lower body to begin shutting down, explaining why he refused to eat.

While doctors developed a treatment plan, we sat distraught in a small sitting room asking ourselves: “What is coarctation? How did this happen? Will he survive?”  The doctors educated us on his congenital heart defect and informed us that this particular condition is typically repairable with surgery, but because his tiny body was in shock and he was so sick they were uncertain he could withstand an operation.  

The surgeon was called in and he gave us two options. The first option was to put Broden on the ECMO machine to stabilize him for a few days. However, the risks outweighed the benefits. Since a blood thinner is required with this option, there was a high chance that bleeding could occur in the brain and/or the aorta could rupture in the process.  For more than three hours Broden received medication via IV to try and open the ductus valve, which is usually successful, but for Broden did not work. 

Now, the surgeon felt surgery was the only option or he would not survive through the night. My husband and I had already decided we wanted to go ahead with the surgery and not wait. We signed the release form, walked with medical staff to the double doors of the operating room and kissed our baby boy.  We waited nervously for five long hours.

Our little warrior survived the operation but suffered immensely the hours leading up to his diagnosis. We were dismayed to learn that his near death experience may have been avoided if only a simple, relatively inexpensive test, pulse oximetry, been used to measure his blood oxygen saturation after birth.

Broden had his first operation at just eight days old, a cath balloon angioplasty at 8 weeks old and his second operation, open chest heart surgery at nine weeks old. We strongly believe had his congenital heart defect been detected shortly after birth using pulse oximetry testing, our son would have undergone just one operation, while his vitals were stable and he was an otherwise healthy baby. We’re very thankful we took him to the pediatrician that day since the onset of this particular CHD is so subtle. Had we waited a few more hours to see if he would start eating, the outcome may have been very different.

Blog content provided by Tabitha Haizlip, mother of CHD survivor Brodan, and a NC You’re the Cure Advocate.

It has been a busy start to the legislative session.  Lawmakers hit the ground running and haven’t slowed down.  Here is the latest news on our top priorities:

Pulse Oximetry:  HB 105/SB 98 Require Pulse Oximetry Newborn Screening was introduced on Valentine’s Day.  HB 105 passed the NC House of Representatives on Monday March 4^th.  Unfortunately during the floor deliberations there was an amendment added that weakened the bill.  Since that time we have been working closely with both our House and Senate legislative champions to make the legislation stronger.  We expect that the legislation will start moving on the Senate side very soon.  Please stay tuned to your email for updates and action alerts so that you can help us keep this legislation passed this year!

Primary Stroke Center Designation:  We have been working very closely with Senator Pate (R-Wayne) and Representative Jim Fulghum (R-Wake) to prepare legislation to be introduced.  I anticipate that we will see this legislation introduced in the NC Senate sometime the week of March 25^th.  Stay tuned for more details.

Tobacco Control Program Funding:  You probably saw on the news that the Governor introduced his budget this week.  Yesterday the Governor’s staff presented a budget overview to members of the House and Senate Appropriations Committees.  The Governor’s budget allots $1,000,000 in recurring state dollars for tobacco control budget.  We are pleased to see recurring state dollars for tobacco control programs but concerned at the exceptionally low dollar amount.  Following the elimination of the Health and Wellness Trust Fund, the tobacco prevention and cessation programs have been whittled away from $17.3 million in 2011, to $2.7 million in funding last year, to a proposed $1 million in funding for the coming fiscal year. This amounts to a funding cut of 94% over the last two years.  For comparison purposes, in the current fiscal year, the state budgeted $1,898,000 million on QuitlineNC alone. With the possibility of a $1 million appropriation for both youth tobacco-use prevention programs and cessation programs, advocates fear the chances for seeing funds allocated to the youth prevention programs could be remote. At a minimum, we will continue to see a serious reduction in the reach and resources of the youth prevention programs.  Send a message to your lawmakers now about these important programs.

As members of You’re the Cure, now more than ever we need your actions to help us move these efforts and build a healthier North Carolina.  Please remember to take action when you get those alerts in your inbox.  Your actions make a difference and your lawmakers need to hear from you!

With the latest on Jones Street,

Betsy Vetter
NC Director of Government Relations

Congenital heart defects are the leading birth defects affecting newborns in the United States. While some families are lucky to have their babies screened and diagnosed before leaving the hospital, others will go home undiagnosed. Some of these babies won't live to see their first birthday, and others will face a lifetime of surgeries, developmental delays, and other complications.

Early detection and treatment of congenital heart defects can make all the difference. Urge your Senator to ensure all babies are screened for congenital heart defects using pulse oximetry.

Moving through the North Carolina General Assembly right now, SB 98 is the perfect solution. It requires every facility to screen newborns for these defects before they go home, using the nationally recommended and most current method: pulse oximetry screening. It's fast, easy, inexpensive, accurate, and painless. And it saves lives.

Send your message of support right away: Help ensure every newborn is screened with pulse oximetry and we will save lives.

We continue to work hard advocating for legislation that will require pulse oximetry screening for all newborn babies.  House Bill 105 passed unanimously out of the NC House of Representatives this week on third reading.  During the floor deliberations there was an amendment added to the bill that we believe needs to be strengthened and we are working closely with partners and lawmakers to finesse the wording. Now the legislation has had first reading in the Senate and been assigned to the Rules and Operations of the Senate Committee.  From here it will need to be heard in the Senate committee. 

Thanks to the great efforts of You’re the Cure advocates and our American Heart Association communications staff we have received some great media attention for this issue.  Check out some of the highlights below:

• http://abclocal.go.com/wtvd/video?id=9008189
• http://www.news-record.com/news/northcarolina/857811-91/nc-bill-requires-testing-newborns
• http://www.salisburypost.com/article/20130301/SP01/130309955/1023/political-notebook-bill-to-require-newborn-heart-screenings-breezes-through-committee
• Panthers TE on a mission to help kids

We are keeping track of these stories in the media, so if you see a story in your local area, please let us know! 

And stay tuned for more updates regarding this legislation and other important AHA/ASA issues.