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FDA Announces Plan to Help Improve Health Equity for Women and Minorities

A new action plan released by the Food and Drug Administration (FDA) to increase the participation of women, minorities, and the elderly in research trials was welcomed today by four leading health organizations as taking an important step toward closing the health care disparities gap.  The groups called on the agency to implement the plan swiftly.

The American Heart Association, National Women’s Health Network, Society for Women’s Health Research, and WomenHeart: The National Coalition for Women with Heart Disease said the “FDA Action Plan to Enhance the Collection and Availability of Demographic Subgroup Data” will not only help boost representation of these population groups in clinical trials, but also will lead to more analyses on how medical drugs and devices affect women and men differently.

The groups particularly applaud the FDA for finalizing its guidance on the evaluation of sex-specific data in medical device studies and for establishing a steering committee and website to oversee and track progress on implementing the action plan. The groups, however, urged the FDA to do even more.  

The FDA’s Action Plan was required by the Food and Drug Administration Safety and Innovation Act (FDASIA), signed into law in July 2012.  The act directed the FDA to review medical product applications to determine the extent to which data on how new drugs and devices affect certain subpopulations is being collected, evaluated and released publicly. By taking the actions outlined in the plan, the FDA will emphasize the need to look for sex, race, ethnicity and age-based differences through medical research, allow subgroup-specific data to be more widely available for use in medical practice, and improve the participation of women and minorities in research trials.

“Guaranteeing greater diversity in research trials will help ensure that patients and their health care professionals have the most up-to-date information needed to make the best decisions about care and treatment,” said the four organizations. “By carrying out the actions recommended by the FDA plan, we can advance our nation’s efforts to achieve the high quality health care that women and minorities want and deserve.”

While the organizations applauded the FDA’s work to address the many issues they highlighted in testimony before the agency earlier this year, they called on the FDA to:

  • Establish and clearly spell out for application sponsors the consequences of not collecting or analyzing subgroup data;
  • Take action to address concerns related to the under-inclusion of women, minorities and the elderly in early phase trials; and
  • More aggressively move forward with additional, standardized subgroup information in the labeling of medical products.

“Gender, race and age play a decisive role in how heart disease, stroke and other forms of cardiovascular disease affect us. Yet, these key populations are often left out of the research necessary to better understand the diverse impact of these diseases,” said Nancy Brown, CEO of the American Heart Association. “That’s why the FDA must not allow this new plan to just gather dust on a shelf. It’s critical that these actions be carried out rapidly and aggressively, and we look forward to working with the FDA to implement this plan.” 

“Women and their health care providers need complete and accurate information about the medical products available to them, particularly the specific benefits a drug or device might offer and the risks it might pose to her because she is a woman,” said Cynthia Pearson, executive director of the National Women’s Health Network. “The current lack of information exposes women to harm that could be avoided by more inclusive requirements for clinical trials. While the FDA Action Plan is a step in the right direction, the agency must do more than remind and encourage industry to include women and minorities in trials and analyze the data. The FDA must require that companies do this to ensure that that the products women use are safe and effective for them.”

“The Society for Women’s Health Research is pleased that the FDA heard our call for the need to release demographic data and establish training for all reviewers to look for sex differences. One of SWHR’s key priorities for more than 20 years has been making sure this data is appropriately analyzed and reported by the FDA,” said Phyllis Greenberger, president and CEO of the Society for Women’s Health Research.  “Still, the Action Plan falls short in several important areas. The FDA should do more to prioritize finding out how medical products affect women and men differently and report that information to patients and health care providers, especially since there have been significant discoveries of sex differences from biomedical research in the last two decades.”

“Women and their health care providers are tired of waiting for access to data demonstrating whether drugs and devices are safe and effective for their use. The FDA has studied this problem for decades, yet
the problem has not been fixed,” said Lisa M. Tate, CEO of WomenHeart: The National Coalition for Women with Heart Disease. “Implementation and enforcement of these recommendations would go a long way toward assuring that providers can recommend appropriate treatments for 51 percent of the U.S. population, including the 43 million women living with or at risk for heart disease.”

In the coming months, the organizations will submit additional comments and recommendations about the FDA Action Plan and work with the agency and Congress to address continuing areas of concern vital
to the health of women, minorities and older Americans.

Read what FDA Commissioner Margaret Hamburg had to say about this important step.

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Rhode Island to Require Pulse Ox Screening for Newborns

Good news for Rhode Island's tiniest hearts!  The RI Department of Health recently finalized a regulation that adds critical congenital heart disease (CCHD) to the mandatory newborn screening panel in the Ocean State.  The new requirement will take effect on July 1, 2015.  Implementation is well underway – all birthing hospitals in RI have adopted pulse oximetry screening for CCHD as the standard of care.   

The Department of Health has been working with Rhode Island’s birthing hospitals over the past two years on this vital initiative.  We greatly appreciate the leadership of the Department and the many physicians, nurses and medical professionals who helped lay a strong foundation for this policy change.  

Special thanks to the many You’re the Cure advocates who supported this campaign – especially our Little Heart Heroes and families from Mended Little Hearts of Rhode Island!

Click the following link to thank Governor Chafee and Department of Health Director Dr. Michael Fine for expediting this important regulation: http://yourethecure.org/aha/advocacy/composeletters.aspx?AlertID=35354 

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Research & Advocacy = Results

In the last decade, U.S. hospitalization and death rates for heart disease and stroke have dropped significantly!  That means our research and your advocacy are paying off!  Let's keep it going to reach the American Heart Association’s 2020 goal — to improve the heart health of all Americans by 20 percent while reducing deaths from cardiovascular diseases and stroke by 20 percent by 2020.  Learn more here:

http://blog.heart.org/study-finds-significant-drop-in-hospitalizations-deaths-from-heart-disease-stroke/

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Arkansas Leads the Way for Decreasing Uninsured Rate

A recent Gallup article indicated that Arkansas is leading the way for reducing the rate of the uninsured population.  Arkansas passed the “Private Option” allowing hundreds of thousands of Arkansas residents access to private health insurance.  Here is more from the Gallup story:
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WASHINGTON, D.C. -- Arkansas and Kentucky lead all other states in the sharpest reductions in their uninsured rate among adult residents since the healthcare law's requirement to have insurance took effect at the beginning of the year. Delaware, Washington, and Colorado round out the top five. All 10 states that report the largest declines in uninsured rates expanded Medicaid and established a state-based marketplace exchange or state-federal partnership.

Delaware, Washington, and Colorado round out the top five. All 10 states that report the largest declines in uninsured rates expanded Medicaid and established a state-based marketplace exchange or state-federal partnership.

As Gallup previously reported, the states that chose to expand Medicaid and set up their own health exchanges had a lower uninsured rate to begin with: 16.1% compared with 18.7% for the remaining states -- a difference of 2.6 percentage points. The already notable gap between the two groups of states widened through the first quarter to 4.3 points, as states that have implemented these core mechanisms of the Affordable Care Act reduced their uninsured rates three times more than states that did not implement these core mechanisms.

These data, collected as part of the Gallup-Healthways Well-Being Index, are based on respondents' self-reports of health insurance status based on the question, "Do you have health insurance coverage?"

Continue reading here:  http://www.gallup.com/poll/174290/arkansas-kentucky-report-sharpest-drops-uninsured-rate.aspx

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Be One In A Million

Million Hearts is an answer. Heart disease and stroke are the first and fourth leading causes of death in the United States. Heart disease is responsible for 1 of every 4 deaths in the country and the #1 killer of women.  But effective community CVD prevention interventions have been underutilized due to a lack of a coordinated national effort.  We must do something to change this, but what could be big enough?

Million Hearts is a national initiative by the US Department of Health and Human Services (HHS) that has set an ambitious goal to prevent one million heart attacks and strokes by 2017.

Million Hearts aims to prevent heart disease and stroke by:

  • Improving access to effective care.
  • Improving the quality of care.
  • Focusing clinical attention on the prevention of heart attack and stroke.
  • Activating the public to lead a heart-healthy lifestyle.
  • Improving the prescription and adherence to appropriate medications.

Each year there are approximately 2 million heart attacks and strokes in the United States. The campaign is expected to produce a 10 percent reduction in the rate of acute cardiovascular events each year for 5 years resulting in one million heart attack and strokes prevented.

The AHA applauds the launch of Million Hearts and is grateful for the opportunities we have been provided to help inform, shape, and support the initiative. We look forward to joining and partnering with the HHS in implementing this initiative, which has the potential to advance the mission and work of the AHA dramatically and to help us achieve our ambitious 2020 Health Impact Goal.

This initiative will focus, coordinate, and enhance cardiovascular disease prevention activities across the public and private sectors in an unprecedented effort to prevent one million heart attacks and strokes by 2017 and demonstrate to all that improving the health system can save lives.

Will you be one in a million?  Be one who makes the commitment to lead a heart-healthy lifestyle….do your part to live a life free of heart disease and stroke. 

Watch your inbox for our action requests to support You’re the Cure policy efforts around healthy living and prevention.  Open and click to help more of the million get there!

 

Thanks to volunteer writer/YTC advocate Karen Wiggins, for help developing this blog post.

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Our new anthem: life is why

School behavioral specialist Carla Leonard had her hand on her heart during the Pledge of Allegiance when a heart attack nearly killed her. Her doctor didn’t mince words with her family afterward: “If I didn’t have surgery, they should pick out a dress for my funeral,” she said. “Plain and simple.”

But Leonard wanted to live — to see her daughter graduate from high school — so after surgery she started on a new path that continues today. She kicked her soda habit, started visiting her doctor regularly and got healthy enough to experience many important milestones in her life.

Leonard exemplifies the American Heart Association/American Stroke Association’s new brand tagline, “Life Is Why.” The phrase, which began appearing with the logo on Heart.org on Aug. 1, is much more than a slogan. It’s the singular idea that stands behind all the lifesaving work the AHA has carried out for 90  years – and it’s the very basic idea that people should be healthier so they can enjoy their lives more.

“The work we do matters,” American Heart Association CEO Nancy Brown said. “It has mattered to my family and I’m sure it has mattered to your family. Life is why.”

(Please visit the site to view this video)

Brown’s grandfather had a blockage of his carotid artery in the early 1970s. During surgery, he suffered a stroke, and his life was never the same — nor was his family’s. He died a few years later after another stroke. “I missed my grandfather then and I continue to miss him today,” Brown said.

But she pointed out that scientific research and treatment guidelines have led to much better outcomes for many others in the decades that followed. One of those survivors is Brown’s sister, who is thriving despite two recent strokes. She received treatment at one of the AHA’s primary stroke centers, helping her working through rehabilitation and regain her life.

“My sister is why, my grandfather is why — and all of you are why,” Brown told the organization’s volunteers and staff when announcing the adaptation of “Life Is Why” as a focal point of the AHA’s brand.

The American Heart Association is the nation’s oldest and largest voluntary health organization dedicated to fighting heart disease and stroke — the two leading causes of death in the world. The AHA fights these diseases through a wide variety of tactics, yet “Life Is Why” can be attached to every facet of the organization’s work.

Life is why the AHA helps people eat healthier foods and get more active — among the many activities the organization has to help people live healthier lives.

Life is why Roni Noone decided to lose weight so she could enjoy her life with her family.

Noone, a 38-year-old Baltimore mom who struggled with her weight in her teens and 20s, has lost a total of 70 pounds because she wants to be there for those special moments with her family. She has joined a gym and even run a marathon – saying she didn’t want to set a poor health example for her sons Ryan, 9, and Evan, 3.

Roni Noone is motivated by the special moments with her family.

“Last year I took Ryan whitewater rafting, and it was really emotional for me. Now I’m doing all the things I got healthy for,” said Noone, a fitness blogger who’s also writing a book. “I want to run a half-marathon with him when he’s 18. And I want to be able to do all these things that I’m doing in my 30s when I’m in my 50s.”

Life is why the American Heart Association has funded more than $3.6 billion in heart disease and stroke research, more than any other organization outside the federal government. Life is why the association works to develop treatment guidelines that help healthcare providers follow scientifically proven treatment standards.

Life is why the AHA is the nation’s leader in CPR training and science, and why the AHA has helped pass many laws and policies that have improved the public health. In fact, now that 17 states have passed laws requiring CPR as a high school graduation requirement, more than 1 million seniors will leave school every year with this lifesaving skill.

Leonard, 52, has gone on to be an AHA advocate for CPR in schools and screenings to detect heart defects in newborns. And she did get to see her daughter Yasmine finish high school, just one of many milestones she has experienced since her surgery eight years ago.

“The highlight of them all was when I heard that my child had used my life-and-death experience to write her entrance essay for college,” she said. “I want to be able to look back on my life and say that I did not waste the second chance I was given.”

And as 13-year-old Natalia Bascunan of Nutley, New Jersey, will attest, loved ones and special moments are the most important illustration of Life Is Why. Natalia made the Little League all-star team years after facing two open-heart surgeries for a heart defect.

“They loved it because she was the only girl in the state on an all-boys team,” said Natalia’s mom, Roe Corsi. “When they found out she had a heart condition, they loved her even more.”

Another person who has embraced life’s special moments thanks to better health is Bernie Dennis, a longtime volunteer with the AHA who is now the chairman of the board.

Dennis said he didn’t appreciate the risks he was taking with his health until he had three heart attacks in one month, followed by a quadruple bypass. While he recovered, he started realizing some of the things he’d taken for granted.

“I can remember the fact that I was sitting on my porch saying to myself, ‘this is the first time in my life I’ve appreciated the warmth of the sun in May,’” he said.

Getting healthier has meant Dennis has gone on to experience precious family time that he would’ve missed. A high school graduation. A wedding. Playing with his “two beautiful granddaughters.” And dressing up as Santa Claus at Christmas.

“There’s a choice you get to make about living or not living,” he said. “My wife’s hand gave me reason to live. My wonderful family gave me reason to live.”

Learn more at www.lifeiswhy.org 

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2 Days Left and So Much to Do!

With only two days left before the legislators break for the summer we need a last push to get some critical legislations to help our kids passed. The House still needs to take action on legislation that would require all coaches to know CPR, restricting the sale and use of E-Cigarettes, and requiring healthy vending in State Buildings and the Senate has a chance to pass legislation that would provide quality physical education in our schools. We also have a chance to get some language in around setting up a stroke system of care and we are waiting for final approval on fresh food financing.

Your legislators are hearing from all advocates in these last few days, it is crucial that your voices is being heard too so if you have not already taken action please do so today! Send an email or call your legislators today and let them know that these issues are important to you! I  appreciate your help and your continued advocacy we only have a few days to pass some important legislative priorities, and I hope to be passing along some good news on Friday!

 

  

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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.”

For more information:

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Pulse Ox Screening for Newborns: RI Department of Health Releases Proposed Regulation

Earlier this year, the American Heart Association, little heart heroes in red superhero capes, and families from Mended Little Hearts met with Governor Chafee to discuss the importance of screening all Rhode Island newborns for critical congenital heart defects using a simple, non-invasive and inexpensive pulse oximetry test.  We are excited to announce that the Department of Health recently released a draft regulation that would add critical congenital heart disease (CCHD) to the mandatory newborn screening panel in the Ocean State.

The Department of Health has been working with Rhode Island’s birthing hospitals over the past two years to implement pulse oximetry screening for CCHD.  We greatly appreciate the leadership of the Department and the many physicians, nurses and medical professionals who helped lay a strong foundation for this policy change. 

Congenital heart defects are the most common birth defect in the U.S. and the leading killer of infants with birth defects.  The evidence speaks for itself – wider use of pulse ox screening could help identify more than 90 percent of heart defects.  

To view the American Heart Association’s comments on the proposed regulation click here: (Please visit the site to view this file)

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Maine is one big small town....

Scott Nevers is an amazing guy. In the past year, he suffered a sudden cardiac arrest, was laid off and started a new business venture. He also started volunteering countless hours for the American Heart Association. CPR, AEDs and a little luck saved his life and he is bound to make the best of it. I met Scott after he gave an impromptu talk about his experience at a Southern Maine CEO breakfast last winter. His friend, fellow survivor and mentor, Bob Hatem asked him to come speak. He was nervous but captivating. We caught up again as he followed the CPR bus (pictured) around Portland telling his story to hundreds of people learning Hands-Only CPR in Maine.

I asked Scott to come to the office so that I could get a handle on his story and see if he was interested in helping with any efforts we may undertake to require all high school students to learn Hands Only CPR before they graduate. He was more than willing.

He told me his story, which began when he was a hockey playing kid. When I asked him where he grew up he told me that he grew up in Gorham. I asked if he knew Representative Sanborn (see previous posts). He told me that Rep. Sanborn was his doctor when all of this started! Rep. Sanborn is one of our best allies at the state house and Scott is looking like he will be one of our best advocates. Gorham must be one special little town in the big town of Maine!

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