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Making Connections for Families with CCHD

It was a typical fall day in Maine. It rained, it cleared, it was windy, it was beautiful. However, for the close to 100 Mainers gathered at the Kennebec Valley YMCA, the day was not typical. Sure, there was cider, healthy snacks and pumpkins (pretty typical fall fare in Maine) but the invitee list was not your typical Mainers. It was a bunch of little heroes.

The American Heart Association in Maine hosted our inaugural Little Heart Hero event. This event has been held successfully in other states and we wanted to see if it would fly here. The purpose of the event is to connect families whose children have CCHD.  We were overwhelmed by its success. There was crafts, running, basketball, Ticker, hula hoops, a few speeches, laughter and general chaos. The highlight was awesome music by Maine country music musician Mark Gentle (check out his video about his son with CCHD.

We were also able to highlight two legislative victories and the legislators who made them happen. Rep. Henry Beck thanked his constituents, Megan Allen and Liz Roy, for their tireless efforts to bring pulse oximetry testing to all Maine hospitals and Rep. Matt Pouliot touted the fantastic new law that requires all high schools teach Hands-Only CPR. We were so happy they could attend.

We hope to host this event each year and incorporate more parent-specific networking activities. If you’d like to help plan, please email me:

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It Does Not Take a Super Sleuth...

We don’t need Nancy Drew to solve this crime.

My daughter was Nancy Drew for Halloween. She loves using her notebook and magnifying glass to solve mysteries that a 1st grader understands (Who left their soccer medal at our house? What shelf at Hannaford is missing its unit price label?).

However, even without her magnifying glass, she is smart enough to figure out that Maine stands to gain if we accept the federal dollars set aside to provide health coverage to the almost 70,000 Maine people, the majority of whom work, who fall into the coverage gap.

These folks work in low paying jobs (that we all benefit from) and make less than $16,150/year for a single person or $27,311 for a family of three. The Affordable Care Act was designed to cover these folks with Medicaid, or in Maine, MaineCare. Unfortunately, our state has opted not to extend coverage to those least able to afford it. They, unlike many of us, are not able to qualify for subsidized insurance—they are just too poor.

In this, we are sitting alone in the Northeast. All of our neighbors have accepted this federal money. They understand that since the Feds are paying 100% of the cost for this year (through 12/31/2016) and then an adjusted rate that never goes below 90% (by 2020) it is too good to pass up.

So, the only reason to deny 70,000 Mainers the health care is: politics. People will die, heart disease will go undiagnosed and Maine will lose money.

It seems completely illogical because it is.

Nancy Drew would not approve.

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Field trips are not just for kids

Last week, on a typical Maine September day (sun, hot, cold, breezy, rain), I took a field trip. My daughter’s class went to Pineland Farm for a field trip the same day, but I was not jealous. My American Cancer Society Cancer Action Network colleague and her lobbyist spent the day at Ricker Hill Farm visiting Rep. Jeffrey Timberlake in Turner. Ricker Hill Farm has been in his family since before Maine was a state. It was amazing and I am definitely going back.

We went on a tour of the processing plant, the cold storage, the cider press, and the hard cider tasting room. We even picked apples. It was so much fun and very informative. If you live anywhere near Turner, you should head out there. They do school tours too. They have a petting zoo for the kiddos as well.

We were there to discuss Rep. Timberlake’s concerns about how the state is spending our share of the proceeds from the lawsuit against the tobacco industry (the Fund for a Healthy Maine).  Maine gets about $50 million a year from the tobacco industry due to the cost of smoking to Maine taxpayers. Rep. Timberlake shares our vision that the intent of this money is to decrease tobacco use and preventative chronic disease in Maine.  He knows that tobacco and obesity are the #1 and #2 killers in Maine and wants to make sure we are doing all we can to solve the problem.

 We gave him the history and background on the Fund for a Healthy Maine and listened to his concerns. 

 As we drove back to our offices, we decided that this was the most fun we had ever had on a legislative visit. We can’t wait to go back.

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Oh when the Saints come marching in

Most of us know the chorus to this song made famous Louis Armstrong, but until this week, I had never focused on the other verses. I decided to look them up after hearing the song for the 15th time on my recent trip to New Orleans.

The lyrics are obviously written from a religious point of view, but they can also be heard through an advocacy lens. Especially this week.  It seems that Mr. Armstrong was singing the song for the American Heart Association Advocacy team. As we took our riverboat cruises and wandered the streets of post-Katrina NOLA it seemed every musician played their rendition of the traditional NOLA song. 

We were in (smoke free!) NOLA for some advocacy and media training and to learn more about the American Heart Association/Robert Wood Johnson Foundation collaboration called Voices for Healthy Kids. This exciting initiative is providing the resources to really try to impact childhood obesity through policy change. The exciting research and innovative policy changes from VHK are already making a difference across the country and I am excited to bring what I learned back home. Look for more from me in the coming months. If you would like to get involved in our initiatives to decrease cardiovascular disease through improved nutrition and physical activity, please reach out to me. 

And as they say:

When we all have (healthy) food to eat

When we all have (healthy) food to eat

O Lord, I want to be in that number

When the Saints go marching in

PS:   In honor of the lunar eclipse that started the week:   

When the moon turns red with blood

When the moon turns red with blood

O Lord, I want to be in that number

When the Saints go marching in 

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Advocates Go Back to School

Advocacy Committee member, Lori Kaley and I stopped by Rep. Chellie Pingree’s Portland office this week. We met with Representative Pingree and two of the Congresswoman’s staff members and gave them the good news: The healthy school food standards are working. In December, 2010, President Obama signed the Healthy Hunger-Free Kids Act. This law gave the USDA the authority to update nutrition standards for school meals and to establish nutrition standards for other foods sold in schools though out the school day. In Maine, 91% of schools meet the new standards—nationwide the number is even higher. That means that kids here in Maine—and across the country—are getting the nutrition they need during school. There have been challenges, but that is not unexpected. Change can be hard. A Harvard study showed that food waste has not increased and the GAO reports that kids like the new healthier food and that the trend of decreases in the school lunch participation that began in 2007 will be reversed due as staff and students adjust to the new menu. This change is for the best and, I predict, will lead to healthier kids.

Lori and I had a similar meeting with a local food service director last week. She told us that her school system embraces the new standards and any grumbling she has heard outside her district has been from people unwilling to change their time-held practices. She is incredibly proud of her school’s salad bar and whole grain food. She gets it—as did Rep. Pingree.

In fact, as I perused my daughter’s September lunch menu, I was incredibly proud of the work that the American Heart Association did to make her choices healthier. I never would have considered having her eat the "hot lunch" a few years ago, but when the options include homemade whole grain pazzo bread with cheese and tomato dipping sauce or oven baked fish sticks with a whole wheat dinner roll and corn on the cob and apples, I signed her up. Now, if I could only convince the school district to give her enough time to eat that healthy food.

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Patience pays off for the littlest hearts

On August 17th the Maine Secretary of State published the DHHS rules that requires pulse oximetry testing for all newborns in Maine. It was a long road, but worth the ride.

Those of you who have been following this blog since its inception 3 years ago know that the American Heart Association believes that every newborn baby should be screened for congenital heart defects using pulse oximetry. When I first blogged about this, 9 states required this simple, non-invasive procedure. I was hoping Maine could be #10.

Well, we did not quite make it—we are closer to #40—but we got it done.

Oftentimes, once a bill becomes law in Maine, there is a long process to develop the rules to implement the law. LD460, Rep. Henry Beck’s bill that required all newborns be screened for critical congenital heart defects became law on July 2nd, 2013 (without the Governor’s signature). That started the clock on a 2+ year rulemaking process, one that the American Heart Association was deeply involved in. We wanted to assure that the rules were based in evidence and included a clear directive to providers to screen for CCHDs using a pulse oximeter

The rules were finalized and now we can celebrate! In fact, we are planning to celebrate in October (date TBD but will be a Sunday afternoon) in Augusta. We are hosting a party for our CCHD families. If you or a family member were born with a CCHD, please send me an email so we can get you an invite!

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Scarborough Rocks and Learns

I love summer. I also love disco music.

That is why I was excited to bring my daughter to the Scarborough Music in the Park event in mid-July. Motor Booty Affair (a disco cover band) was playing and the night was beautiful.

The best part—it was work.

The Scarborough Fire Department teamed up with the American Heart Association to teach Hands Only CPR to the exuberant crowd. An AHA board member spoke briefly and the band played Stayin’ Alive. We, and the Scarborough FD, rushed into the audience with our manikins and demonstrated and taught CPR to the 2,300 in attendance.

It was a fun night. It made me grateful that events like this, and the fact that all Maine high schools must teach Hands Only CPR, means that tens of thousands of people across our state will be able to respond to a sudden cardiac arrest.

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Treasure These Days...

My daughter loves digging in the sand for buried treasure. When she was a toddler, we snuck some skee ball tickets in to the sand when she was not looking. We did the same again this past weekend, only this time we really made her dig for them. The smile on her face when she unearthed the tickets was priceless. As I sat and walked on the beach, I looked around at the other people enjoying the (short) Maine summer. Kids were running back and forth, body surfing and chasing seagulls. These kids were definitely getting their exercise. However, I also noticed the 20-oz. bottles of Coke in their hands and the copious amounts of junk food on their towels.

It is very hard to eat a healthy diet at this particular beach unless you pack food from home. Trust me, I have tried. Fries, fried dough and pizza rule the day here. I could not help but think about a webinar I attended on sodium and kids. The amount of sodium in the food sold at restaurants often far exceeds the amount that school-aged kids need. Most kids only need 1,500 mg a day.

The good news is that when these kids finally get the sand out of their hair and head off to school in the fall, their lunches will have less sodium. An old school lunch at your typical middle school could have about 1,500 mg.—a full day sodium in one meal. The current standards, adopted last year, reduce that amount slightly—with a target of no more than 1,360mg. The standards for the 2018 school lunches will be 860, still more than half of what kids need, but much better than the full day supply they were receiving and about equal to a fast-food cheeseburger and fries. Not a heavy lift.

However, the food industry has gotten to the US Senate in an effort to roll back and delay these important standards. Unbelievably they are actually making headway. The American Heart Association knows that the science is strong, that sodium causes increased high blood pressure in kids and teens, leading to serious health problems down the road.

The American Heart Association knows that our kids are our treasure and that if we want them to be able to enjoy beach weekends with their kids (and maybe sneak some skee ball tickets into the sand), we need to do what we can to keep them healthy.

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Nicotine-laced aerosol in your workplace? Yup.

By now, you have all heard about these new tobacco products called e-cigarettes. These products take addictive nicotine-laced liquid, add candy and fruit flavors, and insert them into a devise that aerosolizes the liquid. People inhale the aerosol instead of smoking. Kids are using these products in record numbers (the number of kids using e-cigarettes tripled last year!). The tobacco industry is working overtime to convince kids that these are safe—and it is working. What they neglect to tell kids is that once they start—it will be incredibly hard to stop. They will become our next generation of nicotine addicts.

The American Heart Association firmly believes that e-cigarettes should be treated the same way as traditional cigarettes. We supported LD1108 that would add e-cigarettes to our workplace and public place smoking laws. LD 1108 is currently on the Governor’s desk after it received strong support from the legislature. We assume he will veto the bill.

Right now, people can spew this aerosol in all restaurants, schools, businesses, shopping malls and grocery stores. We know that the aerosol contains nicotine, formaldehyde and other chemicals. We know the second-hand aerosol is a lung irritant. E-cigarettes could be used right next to your grandfather with COPD at a local diner or your asthmatic child at the library. This is dangerous and a terrible precedent. I know that I don’t want my 6-year old exposed to nicotine where she eats and plays. If an adult who is already addicted to nicotine wants to use an e-cigarette, they can follow the same rules as smokers.

If the Governor vetoes LD 1108, we will need your help to make sure the legislature overrides his veto on July 16th. You will receive (if you have not already) an email from me asking for your help. Please respond ASAP. Thanks!



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Rounding Third and Headed for Home...

The American Heart Association’s fiscal year ends at about the same time as the end of the legislative session. That makes June a very busy month. I have been at the state house every day (and some nights) during the past month working to try to override Governor’s vetoes and trying to stop bad bills from passing. I am happy to report that we had a fairly good year. First the good news:

We overrode a Governor’s veto on a bill that requires all high schools to teach Hands-Only CPR. An amazing effort led by some phenomenal AHA volunteers. We hit a home-run.

Second, we managed to protect our state’s investment in tobacco prevention and public health. The legislature (just hours ago) voted to override the Governor’s veto of the budget. The Governor had proposed cutting $10 million a year from the Fund for a Healthy Maine. After a lot of work, we were able to convince the legislature that creating a new generation of smokers was a terrible idea.

Third, we "killed" a bill that would have allowed cigar bars back in Maine. This was an intense lobbying effort by us, the American Cancer Society Cancer Action Network and the American Lung Association. Legislators mentioned receiving your calls and emails. Thank you for your efforts. We needed to play hardball and you were there to back us up.

Unfortunately, it was not all good news. The legislature failed to override the Governor’s veto on a fantastic school marketing bill. In their rush to finish their work, the House voted only two hours after they received the veto letter. This did not give us time to lobby or to activate our volunteers. This bill had unanimous support from the Education Committee as well as the legislature during enactment. Because of their impatience, the junk food industry will still be allowed in your kid’s schools with their giveaways and posters. The more entrenched they get the harder it will be for us to fight, but we will keep trying. We also failed to override a veto of a bill that would have helped smokers afford health insurance and failed to pass a bill that would have allowed low-income working Mainer's to get the health care they need. Three strikes.

Now, I plan to spend a long holiday weekend playing baseball with my daughter and eating strawberries.

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