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Advocate Testifies about the Personal Toll of Chronic Diseases

You're the Cure advocate Stephanie Dempsey of Blairsville, Georgia, testified Tuesday in Washington about the impact of chronic disease.

The hearing was to begin a conversation on chronic care, according to Senate Finance Committee Chairman Sen. Ron Wyden, D- Oregon.

Dempsey, age 44, said she has suffered from multiple chronic conditions for most of her life.  She has coronary artery disease, lupus, a seizure disorder and arthritis. She told the committee that her chronic conditions have led to a loss of independence, financial security and family.

“I have always considered myself a middle class American. I had a well-paying job. I owned my own home and was happily married,” Dempsey said.  “Unfortunately, this is not the case today.”

Dempsey was diagnosed with hereditary coronary artery disease at age 21, which has affected all the women in her family. Her only sister died from it at 28.  At age 48, her mother had quadruple bypass surgery.  Dempsey herself had quadruple bypass surgery at 30 and since then has had another bypass surgery and received 27 stents.

She takes 19 medications a day, in addition to doctor-recommended supplements.

Due to her debilitating conditions, she lost her job and her home.  Fighting tears, Dempsey said that the strain caused by her chronic health conditions also ruined her marriage and that she had no choice but to move in with her parents, who take care of her. Her specialists are more than two hours away and due to her seizure disorder, she is unable to drive and her parents must take her to appointments.

The lack of coordination between her specialists caused one to prescribe a medication for lupus that can cause seizures.  He did not remember that she had a seizure disorder.  It took several days and “much persistence” to adjust her treatment.

Dempsey said she’s her own healthcare coordinator.  “Although I consider myself an educated person, navigating this maze is very difficult and very exhausting. But it is my life at stake, so I have no choice except to remain engaged,” she said.

It took two years, but she is now covered by Medicare. Yet, she said she still struggles to pay her medical bills.

Despite her struggles, Dempsey said she felt fortunate to be at the hearing to present her testimony.

“I am confident that you will not forget me and countless other people when you develop policies that will help all of us,” Dempsey said. “Our goals are all the same – to live long, healthy and productive lives.”

Sen. Wyden said at the end of the hearing that it was overwhelming to hear Dempsey’s story.

“My own judgment is that chronic disease has really gotten short shrift in the big debates. I don’t think it happened deliberately,” said Wyden. “What you heard today from Senators again on both sides of the aisle is that those days are over — when chronic diseases get short shrift.”

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Share Your Story: Dr. Jim Blaine

Dr Jim Blaine Missouri

As an Emergency physician for 17 years, Dr. Jim Blaine is very aware of the devastation caused by cardiovascular disease.  As a Family Physician for the last 15 years, he acknowledges that most cardiovascular disease can be prevented.

Recently, Dr. Blaine has become a Provider Champion with the Missouri Million Hearts initiative.  The Million Hearts program seeks to coordinate and encourage ASHD prevention and Dr. Blaine is eager to be included in that effort.  By joining the Million Hearts initiative in Missouri as a physician champion, he will be an expert resource providing suggested activities and educational opportunities for the program here in Missouri.

He is currently the Medical Director for the Ozarks Technical Community College Health & Wellness Clinic in Springfield, MO.  He also chairs the Greene County Medical Society's Community Health Advisory Committee and the Missouri State Medical Association's Public Affairs Commission.

He has an extensive history supporting the American Heart Association that goes way back and includes supporting the initiatives of smoke free air in MO, Prop B tobacco tax increase campaign, AEDs in schools and AED Solutions to name a few.

 

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Watch Out for Sneaky Salt!

Did you know that most Americans eat more than twice the American Heart Association’s recommended amount of sodium? Chances are, that includes you—even if you rarely pick up the salt shaker. The worst part is, most of us don’t even realize how much salt we’re taking in. But sure enough, Salt is sneaking up on us—mostly when we go out to restaurants or eat packaged foods.

Check out this new 1-minute video to see for yourself:

(Please visit the site to view this video)

It’s true; many of us love salt. In fact, sodium is an essential nutrient! But the excess amounts we’re eating put us at risk for elevated blood pressure which means an increased risk of heart disease and stroke. As much as we might have an affinity for salt, it’s just not worth the cost to our hearts. There are plenty of other ways to enjoy tasty food with less salt. Check out our new website to get the 411 on sodium, including our blog, quiz, infographics, links to lower-sodium recipes and more. 

That’s why the American Heart Association is kicking off a new campaign, “I love you salt, but you’re breaking my heart.”  Click the image below to pledge to reduce your sodium intake today!


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Share Your Story: Kaala Berry

Kaala Berry Kansas

I am a junior at Blue Valley North High School in Overland Park, KS. Since 2011,  I have been actively volunteering in various American Heart Association initiatives such as  health  fairs, “Power To End Stroke” program and advocacy efforts such as Hands Only CPR, Healthy  Nutrition in Schools,  NIH funding campaigns supporting medical research and the Million Hearts initiatives, just to name a few. 

Participating in community service is near and dear to my heart.  I have family members who had been diagnosed with cardiovascular disease in addition to my own experience.  Recently, I have been diagnosed with a non-congenital heart murmur.  It was during a routine sports physical for basketball. I’ve had routine physicals for years, but this was the first one that detected my condition. The doctor recommended immediate follow up with my Primary Care Physician who then referred me to a Pediatric Cardiologist. 

Since then, I have been more in tune with research, funding, diagnosis, treatment and what it really means to sustain a HEALTHY HEART as a YOUTH! ! I am more motivated now than ever before to educate and advocate; not only in my community but around the world.  I strive to be a voice for those who may not recognize or understand the importance of cardiovascular health and wellness.

I am very excited to support the American Heart Association’s advocacy efforts and initiatives.  Through this work, I feel I have been given the opportunity to continue to be a “Voice”. It’s not just about me making a difference in lives; it’s about the many people who are in need of support, education, information and resources.  My advocacy efforts allow me to help educate others on prevention, access and empowerment to live a life with a “Healthy Heart”!  ADVOCACY SPEAKS!

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Share Your Story: Dezi Hamann

Dezi Hamann Iowa

Dezi exudes strength and joy.  As his mom, and as a heart mom, I owe it to him to do everything I can to help sustain the progress that was made by three pioneers with heart babies.

It was April 21, 2013 that our baby was diagnosed with a CHD and that moment feels like it was a lifetime ago.  Dezi underwent open heart surgery on November 14th, 2013 at 6.5 months old.  Up to that time, my biggest fear was handing him over to the nurse and putting my faith into his heart team and our higher power.  When that moment actually came, it was the most incredible feeling of relief as I could feel the weight lifting off my shoulders.  The surgeon later told me that based on his tests, there was no medical explanation for the fact that his oxygen levels remained at 100%.  I assured him that not all things required a medical explanation.  He also stayed on his little growth curve at the 4th percentile. 

Dezi flew through recovery with flying colors.  He did suffer a few minor complications, but nothing that kept him from being discharged to home in a record 4 days.  It was 6 days after surgery that he did a photo shoot with the American Heart Association.  At 8 days post-op, he met his Heart Heroes, Fred Hoiberg and Billy Fennelly and they did some pictures together and Dezi got an autographed basketball.  I like to think of him as the lucky charm that helped the ISU basketball team do so well this season.

Since then, we've just been working on playing catch-up.  Dezi spent a lot of his first 6.5 months going easy and napping frequently.  It's normal for babies with medical issues to have developmental delays.  I expected them to be physical, but mostly it has been verbal.  He's incredibly mobile and we are just waiting for him to take his first unassisted step at any moment.  He's a wild man that loves to climb on and around anything, and chase our kitten.  He's perfected his "dribble" and can now slam dunk his basketball on his mini hoop set.  And best of all, he loved to laugh.  He isn't very vocal yet, but we're working on it, and I know the day that we miss his quiet will be here before we know it. 

One of the best parts of the last year has been to meet members of our community and share his story.  We had no idea how common CHD's were, or how limited the funding for research and development was.  As little as 50 years ago, these babies were given a death sentence with their diagnosis.  We have learned that Vivien Thomas, Helen Tossig, and Alfred Blalock (a black man with no formal education, a deaf woman, and a white man in the 50's), defied obstacles and started "fixing" these blue babies.  A woman who was raised to never let anything stop her from her life's goal decided that she wanted to do something about this ignored population, and she recruited the help of two men who listened to her pleas.  While I don't have the ability to be a Helen Tossig, I can aspire to be the type of woman she was in being the change that she wanted to see in the world around her. 

Thank you for taking the time to read our story.  Please, feel free to share his picture, share his story.  If you can, join a heart walk, donate some money, help with a fundraiser.  It's the little things that snowball and make great things happen.  Not all heart families are as lucky as we have been.  Our hero was able to be "fixed".  Maybe 50 years from now, all heart babies will have that same opportunity.

 

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Five Questions with Dr. John Warner

I’m pleased to introduce you to Dr. John Warner who recently assumed the role of Chair of the American Heart Association’s National Advocacy Coordinating Committee. Dr. Warner is Chief Executive Officer of UT Southwestern University Hospitals and Clinics and is a Professor of Internal Medicine in the Division of Cardiology based in Dallas, Texas. In his new volunteer leadership role, Dr. Warner leads a group of volunteers charged with shaping the organization’s advocacy agenda and the priority issues. Let’s get to know him better in this month’s featured interview…

Q: What personal and professional connections do you have to the fight against heart disease and stroke?
A: I am the first person in my family to pursue a career in medicine, so I did not grow up always wanting to be a doctor.  My father was a CPA, and had hundreds of physicians as clients, many of whom encouraged me to seek a career in medicine.  I was a decent athlete in high school and college and was always interested in physiology and exercise training, and it was there than my interest in the heart was born.  During that same time in my life, both my grandfathers were diagnosed with heart disease, and as I watched the limitations the disease imposed on their lives, I became even more committed to a career in cardiology.
 
Q: Can you tell us about your volunteer history with the American Heart Association/American Stroke Association?
A: Like many Cardiologists, my first involvement with the AHA started with Scientific Sessions, attending and presenting abstracts. I served as the President of both the Dallas Division and the Southwest Affiliate and I am currently serving on the National Board.  While I have enjoyed being involved in so many aspects of the AHA's mission, I have derived a lot of satisfaction from working on the Smoke-Free Dallas initiative and the W.W. Caruth Jr. Foundation/Communities Foundation of Texas Dallas County Heart Attack Systems of Care Project.  My volunteer work in Dallas began as a Heart Walk captain, and last year I was so pleased to see 2000 members  of our UT Southwestern community walking together in that important event.
 
Q: What are you most looking forward to as the Chair of the AHA’s national Advocacy Coordinating Committee?  Where do you see our greatest opportunities to make an impact?  
A: In 2012, I made a career move from being a full-time practicing Cardiologist to a Hospital CEO, and I did so primarily to have a broader impact.  I view my AHA service as Chair of the Advocacy Coordinating Committee as a similar opportunity, taking my passion for issues of heart disease and stroke care and applying it to a broader audience.  This is an exciting time to be involved in advocacy, as health and wellness are front and center in the national discussion, and we at the AHA have a unique opportunity to drive important policies and discussions which will impact the health of so many.  As a parent of teenagers, I think often about how Smoke-Free environments and healthy eating will be so important to the environments in which they live and work – and to their overall health.   When I think about how we can make the most impact, I think it begins with our fight against smoking and educating ourselves and our kids about healthy food choices.  I know when I eat healthier, my commitment to exercise improves and exercise follows and vice versa.  So I think our biggest opportunities are in creating environments where healthy eating and exercise are supported and encouraged, both for children and adults, and in working to eliminate smoking.  I also think advocacy for research is really important.  With the cuts in research funding we have seen in recent years, I worry that we may lose a generation of best ideas and scientists.  We have to help our government, and our nation, understand that tomorrow's treatments start with today's research.
   
Q: How have you been involved as a You’re the Cure advocate? 
A: Both in Dallas and in Texas, I have been involved in advocacy for tobacco control and systems of care for heart attack and stroke.  As an Interventional Cardiologist, I know first-hand how important systems of care for heart attack and stroke are, and know that I can make a greater difference as a medical team member when continuous processes are in place to improve patient outcomes.  Having seen the results of our work in Dallas, I want other cities and states to have that same opportunity to improve the health of their community.
 
Q: What would you tell others to encourage them to get involved with advocacy?   
A: Advocacy is so satisfying because your service affects so many people.  When I think about how many people benefit each day from tobacco control in Dallas, from food service workers to restaurant patrons, it makes the seemingly very small amount of time and effort I invested in that effort so worthwhile.   Everything the AHA supports contributes to the health of so many, including me.  

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Where Do Your Candidates Stand?

Federal funding for basic research is an essential step towards achieving medical progress for heart and stroke patients. Over the past decades, we have seen remarkable breakthroughs done at the National Institutes of Health (NIH), such as the development of pacemakers and the discovery of a clot-busting drug used to treat stroke.

However, during the last ten years, the NIH has lost more than 20% of its purchasing power. This dramatic downturn has come at a time when other countries are increasing investments in science and when the need for innovation to prevent, diagnose, and treat heart disease and stroke is great.    

But we can change that by exercising our right to vote in November!  To help voters choose candidates whose values on medical research align with their own, the American Heart Association has partnered with Research!America to launch the 2014 Ask Your Candidates! initiative – a national, non-partisan voter education program that empowers voters to be more informed about their candidates’ views on medical progress. If elected to Congress, what will your candidates do to ensure that discoveries of life-altering or live-saving treatments or cures continue?  Will they support funding increases for the NIH?  The answers to these questions is crucial as the nation prepares to go to the voting booth in November.

How can you get involved? Here a couple ways:

1) Visit www.askyourcandidates.org and complete an online form that will assist you in sending a message to your candidates to find out how they view the future of medical progress. It’s easy and only takes a few minutes.

2) Keep an eye out on your candidates' websites, newsletters and social media pages for information about town hall meetings they are hosting in your community! If you decide to attend, go ahead and ask a question of about research. We have provided some sample questions for you to customize.

  • As a stroke survivor, I am very concerned that the National Institutes of Health continues to invest a mere 1% of its budget in stroke research, despite promising research opportunities.  What will you do to secure an increase in funding for stroke, the No. 4 killer and a major cause of permanent disability in the United States?
  • As a heart disease survivor, I am very concerned that the National Institutes of Health continues to invest only 4% of its budget in heart research, despite promising research opportunities.  What will you do to secure an increase in NIH funding for heart disease, the No. 1 killer and a major cause of disability in the United States?
  • The National Institutes of Health (NIH) invests in every state and in 90% of congressional districts, including our own.  In addition to saving lives, NIH is an economic driver, supporting high paying jobs, spurring innovation, and maintaining our Nation’s position as the world leader in medical research.  But, over the last decade, NIH has lost 20% of its purchasing power at a time of heightened scientific opportunity and when other countries are increasing their investment in research—some by double digits. What will you do to reverse this trend?

Medical research done at the NIH is crucial for the future of our country’s health and economy. Let’s see where our candidates stand on this important issue before heading to the polls in November!

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Teaching Gardens = Learning Laboratories for Kids

Studies show that when kids grow their own fruits and vegetables, they’re more likely to eat them. That’s the idea behind the American Heart Association Teaching Gardens.  While 1/3 of American children are classified as overweight or obese, AHA Teaching Gardens is fighting this unhealthy trend by giving children access to healthy fruits and vegetables and instilling a life time appreciation for healthy foods.

Aimed at first through fifth graders, we teach children how to plant seeds, nurture growing plants, harvest produce and ultimately understand the value of good eating habits. Garden-themed lessons teach nutrition, math, science and other subjects all while having fun in the fresh air and working with your hands.

Over 270 gardens are currently in use nationwide reaching and teaching thousands of students, with more gardens being added every day.  You can find an American Heart Association Teaching Garden in your area here or email teachinggardens@heart.org to find how you can get involved.

               

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American Heart Association Hopes NIH Increase Will End Flat-Funding Cycle

Washington, D.C., June 10, 2014American Heart Association President Mariell Jessup M.D. issued the following comments today on the Senate Labor-HHS-Education Appropriations Subcommittee’s proposed $605 million increase to the National Institutes of Health’s (NIH) FY 2015 budget:

“We strongly hope this modest boost to the NIH budget is the start of a new trend for federal research support. While it falls short of our recommendation, we greatly appreciate the efforts of Chairman Harkin and Ranking Member Moran to move NIH away from the flat-funding cycle it’s been stuck in for several years.

The Senate Subcommittee’s action has provided a glimmer of hope for the one in three adults in the United States who are currently suffering from cardiovascular disease – our nation’s No. 1 and most costly killer. We are pleased that the National Heart, Lung and Blood Institute and the National Institute of Neurological Disorders and Stroke will receive some of this additional support so that more research advances can benefit heart and stroke patients.

This slight two percent increase in funding could help support initiatives like spinal cord stimulation to help paralyzed stroke victims regain mobility, or using a patient’s own stem cells to improve heart function. If Congress can provide more federal dollars to the NIH in coming years, medical breakthroughs like these can offer hope for millions of Americans.

Robust support for the NIH also encourages young investigators to pursue research careers, supports valuable jobs, and preserves our position as the world leader in medical research. The association will continue to fight for adequate and sustained funding for the NIH to help Americans live free of heart disease and stroke.”

 

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Speak Up for Tobacco Regulation

The Food and Drug Administration has proposed a new rule that would regulate all tobacco products, including cigars, electronic cigarettes, pipe tobacco, hookah tobacco, nicotine gels and dissolvables. This is a good step, as the FDA must have authority over these products to protect public health.

Among the new rule's requirements, manufacturers would have to disclose ingredient lists for their products and include warning labels on product packages and advertisements. It would ban the sale of these products to anyone under the age of 18, however, the rule does not go far enough to protect young people from the harms of tobacco.

As proposed, the rule does not prohibit the use of candy and fruit flavorings in these tobacco products. It also does not restrict marketing, despite a recent study showing a sharp increase in youth exposure to e-cigarette advertising in recent years. Candy and fruit flavorings and advertisements may account for the rapid rise in cigar and e-cigarette use by young people. These measures must be added.  

The public has until July 9th to submit comments on the proposed rule before it is finalized by the agency. You can tell FDA stronger standards are needed for all tobacco products. Add your voice today!

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