Archive for the ‘Advocacy’ Category

We’ve moved!

Monday, October 1st, 2012

Starting today, the You’re the Cure blog has a new name and a new home. The You’re the Cure blog is now The Pulse and can be found on the new YouretheCure.org.

Why the change?

The Pulse will still cover the content that you are used to seeing here, but so much more! You will have unprecedented access to not only federal heart and stroke articles, but also content that is specific for your state. You will be able to comment and discuss topics with other blog readers from your state and across the country.

Really enjoyed an article and want others to see it? The Pulse blog will let you share articles and post on your social media networks, such as Facebook and Twitter.

In addition to being the home of The Pulse, the new Yourethecure.org takes heart and stroke advocacy to the next level. On one site, you’ll be able to easily access information about our issues, take action on state and federal alerts, RSVP for events in your community, and read inspirational stories from advocates like you.

How can you start enjoying all these new features? All you need to do is sign-up to enjoy the new yourethecure.org.

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What a month for You’re the Cure Advocates!

Wednesday, August 29th, 2012

What a month it’s been for August recess visits! All in total, we have sent over 7000 messages to Capitol Hill urging Members of Congress to protect medical research at the National Institutes of Health (NIH) from the upcoming budget cuts, or sequester, coming up in January.

In addition, You’re the Cure Advocates from across the country have been speaking with their Members of Congress in their district offices.

Have you sent your message yet? If not, there is still time! Here is how you can get involved:

Sending a quick email to your lawmakers right now in support of protecting funding for the NIH!

• Using Facebook and Twitter to spread the word about how critical research is to preventing and treating heart disease and stroke. Share this video with friends, family, and lawmakers today!

Contacting your local AHA advocacy staff partner to learn about ways you can get involved offline, such as sharing your Research Saves Lives story or meeting with your elected officials.

Advocates meet with California Congresswoman Susan Davis.7-time heart attack survivor Steve Irigoyen meets with Congressman Ken Calvert.

7-time heart attack survivor Steve Irigoyen meets with Congressman Ken Calvert.

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Waiting for 2014: One Family’s Story

Thursday, August 23rd, 2012

When Joshua Lemacks of Richmond, Virginia takes the field for one of his Little League games, the other team may not be overly impressed with his batting average stats, but those who know him realize that he has beaten extreme odds just to be standing on that field with his teammates.  What the other team doesn’t know is that if Joshua and his parents hadn’t batted 1000 in his early years, he wouldn’t be alive today.

Nine years ago, soon after Joshua was born, a fetal cardiologist came into the room with a box of tissues and told his parents that their newborn’s heart defect was 100% fatal. Later, the cardiologist offered them somewhat better odds if Joshua underwent three high-risk surgeries, one right after delivery.  His odds of surviving the first surgery were about 5 percent. Joshua’s parents, Jodi and Mark, opted for the surgeries because they wanted to give their baby the best chance they could.  Even though they were insured, they incurred monumental out of pocket costs.

Today, Joshua has not only beaten those odds, he is thriving. “He’s as healthy as a horse,” Jodi says. He plays baseball and golf and is a very happy child who seems like any other active little boy except for the scar on his chest and the medical bills that have piled up for his family.

Even when Josh is healthy, the family’s medical bills add up. Josh has, effectively, “half a heart,” as Jodi puts it, and with today’s technology, his defect cannot be “fixed.” He needs regular check-ups, but he also needs to see a cardiologist at least once a year and undergo expensive testing.  Also, while he doesn’t get sick more often than other children, normal childhood illnesses hit him harder than they do others because his heart can’t work as effectively.  Jodi estimates their health care expenses to be as much as $17,000 in out-of-pocket costs, including premiums, in good years when Josh is relatively healthy. This is a substantial portion of their family income. Even though it’s comprehensive medical insurance, the premiums and co-payments required to obtain needed medical care are prohibitive.

This affects not only Josh but the whole family. When Josh’s older brother hurt his arm in an accident during a family trip to New Orleans, they debated going to the emergency room for x-rays because of the cost. They did take him – he’s their son, after all – but, just as they feared, they got “nailed with bills” because their plan only covered a fraction of the cost.

“I feel trapped” in this health insurance policy, Jodi says. Even though she has a better, more generous group plan through her job at a national non-profit, Jodi is afraid to move her kids and husband onto it. Why? Because when the family enrolled in their current policy, Joshua hadn’t been born yet. And he hadn’t yet had his diagnosis of hypoplastic left heart syndrome. As a result, the insurance company’s underwriters assigned him the healthiest possible risk category – a “1” in insurance terms. As high as they are, their premiums are set as if Joshua were a “normal,” healthy child.

But that would not be true if they were looking for a new individual policy on the market today. An insurance underwriter would take one look at Josh’s medical history and run in the other direction. If the family obtains a new policy that includes Joshua, they can expect to pay high rates because of Joshua’s illness– as much as $3100 per month in Virginia, their home state. So Jodi is afraid to move him off their current policy and onto her group plan. If she were to lose her job-based insurance for any reason, they almost certainly could never find an affordable new policy for Joshua.

Because of Joshua’s condition, he will inevitably need long-term monitoring and care. His heart problem cannot be “fixed.”  Kids with this problem may develop arrhythmias, may need a pacemaker, and can develop liver disease, among other complications. Because the oldest person with this condition is only in his 30s, no one really knows what the life-expectancy is, but we do know care over their lifetime will be costly.

With the Affordable Care Act comes new hope for Joshua and his parents. Beginning January 1, 2014, insurance companies will no longer be allowed to charge more to cover Joshua because of his heart condition. The family will pay the same premiums as a family without any health problems.

And Jodi is looking forward to the new state-based marketplaces called insurance exchanges, which will, for the first time, offer web-based tools so she can make apples-to-apples comparisons among different health plan options to select a plan that has the doctors and care Joshua needs.

We asked Jodi what it would mean for her to have guaranteed access to policies in which Joshua couldn’t be discriminated against based on his health status, and an exchange where she could compare her options. She responded: “That gives me choices. I also think it will be more competitive. Right now I’m stuck. I don’t like our current policy, but I can’t move Joshua anywhere else. But if I can compare plans on an exchange, maybe there is one out there that covers a bit more of what we need. That would give me the freedom to choose it.”

In addition, because the family’s income is less than 400% of the federal poverty level, they are likely to qualify for the ACA’s tax credits to help defray the cost of their insurance premiums. In addition, health plans will be required to cover a comprehensive set of benefits and limit families’ out-of-pocket costs.

Jodi imagines a future for Joshua under the ACA in which he can embark on a career that matches his skills and passions, secure in the knowledge he can get the health coverage he needs. He won’t have to choose a job just because it offers a good health plan. “He can start out of college…and he’ll have choices,” she says. “He is such an amazing child, and we love him so much. Like any parent, we want the absolute best for him.”

Thanks to the support of the Robert Wood Johnson Foundation, the AHA is proud to be a part of the Georgetown University Health Policy Institute’s “Real Stories, Real Reforms” project.  You can read more profiles of everyday people across the country who will – or have already – benefited from new consumer protections under the Affordable Care Act on the CHIRblog .  This post – about Joshua and his family – marks the first story in the series.  We hope you’ll follow future stories about the impact of the Affordable Care Act.

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Budget Cuts to NIH Will Result in Job Loss

Friday, August 17th, 2012

We are sure that you have heard about the upcoming budget cuts (or sequester) that are coming in January if Congress does not stop them. These cuts could have disastrous effects on medical research at the National Institutes of Health (NIH) and could delay many important breakthroughs in health research.

However, medical research also provides jobs in local committees. Whether it’s researchers, lab technicians, or those who work in universities, NIH funding equals jobs. The folks at United for Medical Research have put together a map that visually shows the amount of jobs that could be lost if these automatic budget cuts happen.

So go ahead and click the map below and see the impact on your state. Don’t like what you see? Go to Research Saves Lives and urge your member of Congress to protect NIH from these budget cuts today!

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There’s a food fight in Congress!

Tuesday, August 14th, 2012

Believe it or not, there’s a heated debate in Congress right now over fresh fruits and vegetables in schools. And we need you to help us be the voice of reason.

Will you take a moment to tell your legislators why providing kids with access to fresh fruits and vegetables during the school day is important to their health and nutrition education?

It’s hard to imagine why some Members of Congress would want to change the Fresh Fruit and Vegetable Program, which effectively:

  • Provides more than 3 million elementary school students in over 7,000 schools in lower income areas across the country with a fresh fruit of vegetable snack every day at school.
  • Exposes children to a wide variety of fresh fruits and vegetables that they may not otherwise have access to.
  • Increases kids’ daily consumption of fresh produce, which is critical to a healthy diet, without increasing their average intake of calories.
  • Supports local farmers and grocers who help supply the schools with fresh fruits and vegetables.

However, despite this success, some lawmakers have offered proposals to the Farm Bill that would cut funding for the program by 1/3 and allow other types of snacks to be served, weakening the integrity of the program, as outlined in an article on Education Week’s blog today.

We can’t allow this to happen. Send a quick email of support today to help defend the Fresh Fruit and Vegetable program!

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This August Recess is All About Research… Are You In?

Tuesday, August 7th, 2012

As Members of Congress head to their home districts for August recess, the National Institutes of Health (NIH) still faces devastating budget cuts scheduled to take effect in January 2013. If Congress fails to act before the end of the year, these cuts (also known as the sequester) will force many heart and stroke researchers to abandon promising projects and tens of thousands of jobs will be lost in research facilities across the country.

You’re the Cure advocates are preparing to demonstrate the value of NIH – funded research throughout the month – and we need you to join our efforts! You can get involved by:

Advocates meet with Arkansas Senator Mark Pryor about NIH Funding.

Volunteers meet with Rep. Tim Griffin (AR) during the August recess.




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CPR in Schools Victory in North Carolina!

Tuesday, July 31st, 2012

Thanks to the tireless efforts by and AHA volunteers and staff, we are pleased to announce that North Carolina Governor Beverly Perdue signed House Bill 837 into law on July 26, 2012. The law requires all students to be trained in CPR as a graduation requirement and will take effect in the 2014-2015 school year.

At the signing, Governor Perdue underscored her enthusiastic support for the bill saying, “I can think of nothing that we’ve done this year that has any more profound and long lasting effects on the health and wellness and survivability in North Carolina from any kind of heart attack or incident.”

The law will ensure that high schools students become proficient in CPR and subsequently, will be able to save a life if the need for lifesaving assistance arises. Representative Becky Carney, who was herself the recipient of CPR from a trained bystander CPR, added, “Providing our youth with the power and confidence to save a life when it matters most maybe the most valuable lesson a student can learn.”

To make sure that the program is properly implemented in schools, the North Carolina Board of Education will work with the AHA and other affiliated national organizations. Last year alone, the AHA trained more than 12 million people in CPR worldwide.

Is your state CPR Smart? Find out now!

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Are you a Caregiver? Tell us your story!

Monday, July 16th, 2012

Are you a caregiver, who helps support someone in your family dealing with heart health issues? Please tell us your experience and you could win a prize! But hurray, you only have until August 31st!

The Centers for Disease Control and Prevention and the Million Hearts Campaign have partnered to create the Million Hearts Caregiver Video Challenge, which launches today! The challenge offers a unique chance for caregivers, who help loved ones maintain a healthy heart, such as preventing or controlling blood pressure, to create compelling personal videos about their experiences in caregiving. The videos should last less than 2 minutes and should provide helpful hints about how they help their loved one to stay heart healthy, including tips about how to keep blood pressure under control.

The challenge aims not only to engage and recognize those individuals who work tirelessly to provide care for friends and family but also to provide other caregivers around the country with inside knowledge and tips about how to keep a loved one heart healthy. The caregivers’ original videos will offer insights on how to prevent heart disease, including dietary, exercise, and other lifestyle changes; preventing and controlling blood pressure; and adhering to medical regimes. Videos can be submitted until August 31st.

Want more information? Visit the Caregiver Video Challenge site today!

The American Heart Association has been a strong supporter of the Million Hearts Campaign and its goal is to prevent one million heart attacks and strokes in the next 5 years. We encourage every caregiver to share their story and look forward to hearing about your experiences! Good Luck!

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Watch our Volunteers Protect NIH Funding!

Tuesday, July 3rd, 2012

Last month, over 40 volunteers and staff took to Capitol Hill to urge Members of Congress to protect funding for medical research. We recently created video capturing the day and the great volunteers who participated. Watch the video below!

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Heart and Women Health Groups Hail New Legislation to Help End Healthcare Disparities Among Women and Minorities

Thursday, June 28th, 2012

The American Heart Association, Society for Women’s Health Research and WomenHeart: The National Coalition for Women with Heart Disease released the following statement:

Washington, D.C., June 26, 2012 – The American Heart Association, Society for Women’s Health Research (SWHR), and WomenHeart: The National Coalition for Women with Heart Disease, today applauded passage of important legislation that would make crucial data available about how new drugs and medical devices affect women, minorities and ethnic groups.

The groundbreaking language took the form of an amendment sponsored by Senator Debbie Stabenow (D-Mich.) to the Food and Drug Administration user fee bill. It strengthens an earlier provision set forth in the HEART for Women Act – bipartisan legislation passed in the House by a voice vote in 2010. Final passage of the overall FDA bill came today and it is expected that President Obama is expected to sign the FDA bill into law.

“We want to thank Senator Stabenow, Representative Lois Capps and other supporters of this important amendment to the FDA bill,” said American Heart Association President Gordon Tomaselli, M.D. “They matched vision to action and determination to results. We view this as an enormous step forward in providing crucial information that can be used not only to advance the fight against CVD and stroke, but also help end the disparities and inequality in health care for women and minorities.”

Progress on women’s healthcare research has been painfully slow – and with tragic consequences. For example, it comes as an unwelcome surprise to many that heart disease, stroke, and other forms of cardiovascular disease (CVD) are the leading cause of death in American women, claiming about 432,000 lives each year – or nearly one death each minute. CVD kills more women than the next four causes of death combined, including all forms of cancer. Minority women and those belonging to low-income groups are disproportionately affected by heart disease; the death rate was 28 percent higher for black women than their white counterparts in 2006.

Over the past few decades, researchers have learned that gender differences play an important role in the prevention, diagnosis and treatment of CVD. Heart attack symptoms may manifest themselves differently in women than in men, and women may also respond differently to cardiac medications. For example, digoxin is used to treat heart failure, yet is associated with an increased risk of death among women but not men. And a next-generation device used in heart failure patients is associated with a higher risk of stroke in women.

Women represent just 38 percent of subjects in National Institutes of Health-funded cardiovascular studies. In addition, three-fourths of cardiovascular clinical trials do not report gender-specific results, making it difficult for researchers and clinicians to draw conclusions about their effects on women.

“This provision has been one of SWHR’s key advocacy priorities for over two decades,” said Phyllis Greenberger, president and CEO of SWHR. “We are pleased to have worked with AHA and WomenHeart to achieve this advancement for women and minorities. It is important that this data is submitted to the FDA for analysis if we hope to achieve personalized medicine in the United States.”

This legislation will help provide for more informed decisions by patients and healthcare providers. It would require the FDA to publicly report within one year on the extent to which clinical trial participation and safety and efficacy data by gender, age, race and ethnicity is included in applications for FDA approval of new drugs and medical devices. Moreover, the agency is required to create an action plan to improve the availability of helpful information to patients, healthcare providers and researchers.

“The inclusion of this provision is a game changer for women’s health,” said Lisa M. Tate, Chief Executive of WomenHeart: The National Coalition for Women with Heart Disease. “Knowing how women will be affected by the drugs and devices used in their treatment will lead to better and more informed choices by patients and providers.”

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