Heart on the Hill - May 2015

Heart on the Hill

2015 You’re the Cure on the Hill Lobby Day

On May 11 and 12, nearly 400 You’re the Cure advocates from across the country traveled to Washington, D.C. to urge their lawmakers to step up to the plate for heart health. Advocates included: survivors who shared their personal experiences dealing with cardiovascular disease and stroke; youth advocates uniquely able to convey the importance of strong school nutrition standards; and scientific volunteers, including those from the medical community, to make the case for increased funding to support more heart and stroke research by the National Institutes of Health (NIH).

In addition, advocates sent more than 7,700 messages as part of “virtual” lobby day, delivering the association’s key advocacy messages through phone calls, e-mails and social media. Members of Congress were urged to protect the healthy school meals standards put in place by the Healthy, Hunger-Free Kids Act, and to increase investment in NIH research, following years of flat funding and cuts.

Prior to their in-person meetings on Capitol Hill, advocates received issue briefings and training to prepare them for their visits, and attended a luncheon recognizing outstanding scientific, volunteer, youth, and survivor advocates of the year.

In the months to come, advocates can voice their support for the association’s top federal priorities, by visiting the childhood nutrition reauthorization education and advocacy site and the You’re the Cure research issue page.

Contact: Matt Fitting

Nancy Brown Pays a Visit to Dallas School

During the Lobby Day Annual Heroes Luncheon, advocates had the opportunity to view a new video, “What’s For Lunch?”, which documents CEO Nancy Brown’s recent visit to the Charles Rice Learning Center in Dallas, Texas. Nancy stopped by the school on April 7 to see first-hand how healthy school meals are having a positive effect on children, lunchrooms, and schools. During her visit, Nancy talked with Dora Rivas, executive director for Food and Child Nutrition Services with the Dallas Independent School District (DISD), about the impressive efforts they have made to the updated school lunch nutrition standards.

Dora and Nancy had the opportunity to go through the lunch line and select one of the school’s popular lunches and then sat down with the students to hear firsthand what they enjoyed most about the healthy meals. While at the lunch table, a local farmer from the farm-to-school program stopped by, allowing students to sample and learn about fresh fruits and vegetables.

After lunch, Nancy and Dora joined the students in the school’s outdoor classroom, where they received a nutrition education lesson presented by REAL School Gardens and then planted tomatoes and peppers.

The visit was part of the association’s efforts to highlight the progress made by the Healthy, Hunger-Free Kids Act to serve nutritious school meals. Some members of Congress are trying to roll back the science-based nutrition standards, despite the negative impact this would have on children’s health. With many children getting 50 percent or more of their daily calories from school foods, the American Heart Association feels more strongly than ever that we must keep this vital public health bill robust. For more information on how you can help these efforts to keep this law strong, visit heart.org/schoolmeals.

Contact: Kristy Anderson

American Stroke Association Sponsors Congressional Briefing on Telestroke

The American Stroke Association sponsored a briefing on Capitol Hill on May 20 to educate Congressional staffers about how telestroke improves the quality of care that stroke patients receive

Stroke Survivor Nancy Lowman (left) and Nurse Danielle Thurman.

and can also save money by reducing the need for long-term rehabilitation and nursing home care. The briefing was co-sponsored by the American Academy of Neurology and the National Stroke Association.


At the briefing, stroke survivor and Senator Mark Kirk (R-Ill.) announced via video that he plans to introduce the Furthering Access to Stroke Telemedicine Act (FAST) in the U.S. Senate. The legislation would allow Medicare to reimburse for telestroke evaluations regardless of where the patient is located. Currently, Medicare only reimburses for telestroke evaluations when the patient is at a rural hospital.

Volunteer Dr. Lee Schwamm, Professor of Neurology at Harvard Medical School and Executive Vice Chairman of Neurology at Massachusetts General Hospital, speaking via videoconference, told Congressional staff about how the MGH TeleStroke Program has improved patient access to the clot-busting therapy t-PA. Dr. Schwamm also did a mock demonstration of a telestroke evaluation.

Stroke survivor Nancy Lowman and Danielle Thurman, Nancy’s emergency room nurse at Catawba Valley Medical Center in western North Carolina, shared how a telestroke evaluation by stroke experts at Wake Forest Baptist Medical Center allowed Nancy to get t-PA quickly and avoid permanent disability from her stroke.

Congresswoman Joyce Beatty (D-Ohio), also a stroke survivor, also shared her story at the briefing.

Contact: Stephanie Mohl

Stroke Survivor Wows House Appropriations Subcommittee

On April 29, 16-year old stroke survivor Ryley Williams testified before the House Appropriations Subcommittee on Labor-HHS-Education on the importance of NIH-supported heart and stroke research. His mother, Terri Rose, joined him at the witness table, and together, they talked about the challenges Ryley has faced and continues to encounter, as well as his determination to sustain his improvement. In addition, they urged other stroke survivors to “never give up.”

At the age of 15, Ryley suffered a series of strokes brought on by a bacterial heart infection. After surgery and ongoing physical, speech and occupational therapy, Ryley’s recovery is progressing, but he still has seizures. Approximately 160 people requested to testify for the hearing but only 23, including Ryley, were selected. Ryley received a special introduction from his member of Congress, Rep. Steve Womack (R-AR), the vice chair of the subcommittee. Womack commented that he was immensely proud to introduce Ryley, who he said was an outstanding young man, and one of his heroes. Subcommittee Chairman Tom Cole (R-OK) called Ryley’s testimony an inspiring story. Rep. DeLauro (D-CT), ranking minority member on the subcommittee, told Ryley that it was a tremendous honor to have him testify. Rep. Barbara Lee (D-CA) said Ryley gave us hope and reminds us of why we are here.

Following Ryley’s testimony Womack said he counted Ryley as a friend, adding that it was Ryley's influence as a trainer that helped his high school football team win eight straight victories.

Contact: Claudia Louis

Congress Passes Two-Year Relief from Therapy Caps

As part of broader legislation titled the Medicare Access and CHIP Reauthorization Act of 2015, Congress acted once again to temporarily protect Medicare beneficiaries from caps on outpatient physical, speech, and occupational therapy until December 31, 2017.

Under the legislation, Medicare patients who have a stroke or other debilitating illnesses, resulting in the need for outpatient therapy (including physical, occupational, or speech) are subject to arbitrary limits or “therapy caps.” However, for the last several years, Medicare patients who required additional therapy over the limits have been able to receive an exception. It is this exceptions process that Congress has extended for two additional years.

During the Senate’s debate on this legislation, Senators Ben Cardin’s (D-MD) and David Vitter’s (R-LA bipartisan amendment that would have permanently repealed the therapy caps fell just two votes short of the 60 s needed to pass. In the three months leading up to this vote, You’re the Cure advocates sent over 10,000 messages to Capitol Hill urging Congress to repeal the therapy caps. In addition, the federal advocacy team worked with the American Stroke Association to engage their audience in campaign efforts.

Although the repeal effort ultimately fell short, the vote marked the first time that a majority of the Senate supported repeal, which will help lay the groundwork for future, hopefully successful, repeal efforts. The association will continue to work with other patient and provider organizations to urge Congress to protect Medicare beneficiaries permanently from these arbitrary caps.

Contact: Stephanie Mohl

Association Presses White House to Finalize Tobacco Rule

At the end of April, the American Heart Association joined 30 other public health and medical organizations in sending a letter to President Barack Obama, urging him to quickly finalize the tobacco deeming rule.

In the letter, the groups noted that is has been more than a year since the Food and Drug Administration (FDA) proposed extending its regulatory authority to include electronic cigarettes, cigars, hookah, pipe tobacco, and certain dissolvables. During that time, e-cigarette use by youth skyrocketed, tripling among middle and high school students, while the use of hookah among these age groups roughly doubled. The letter warns that any further delay in finalizing the rule will only benefit the tobacco companies and will continue to put youth and the public’s health at risk.

The groups launched a social media campaign the same day the letter was sent, asking their advocates to tweet the White House on this issue. The tweets directed the administration to immediately give the FDA authority over all tobacco products, including e-cigarettes and cigars.

Contact: Susan K. Bishop

Comments Submitted on Dietary Guidelines Advisory Committee Report

Earlier this month, the association submitted comments in response to a federal advisory panel’s recommended changes to the U.S. Dietary Guidelines. The association’s letter offered support for the Dietary Guidelines Advisory Committee report, applauding the recommendations to eat more fruits, vegetables, and whole grains, and less sodium, saturated fat, and added sugars. The letter also encouraged the federal government to do more than simply tell Americans how to eat better; broad policy changes, such as working with food manufacturers and restaurants to reformulate products and offer healthier foods, should also be pursued to improve the food supply.

In addition to submitting comments, the association also participated in a Capitol Hill briefing to educate members of Congress and their staff about the Advisory Committee’s report. A review of the evidence supporting sodium reduction was provided by Lawrence J. Appel, MD, MPH, chair of the association’s Council on Lifestyle and Cardiometabolic Health, director of Johns Hopkins’ Welch Center and a professor of medicine at the university. At the conclusion of the briefing, Hill offices were encouraged to submit comments in support of the Advisory Committee’s recommendations.

The U.S. Departments of Agriculture and Health and Human Services are currently in the process of reviewing the advisory committee’s report, comments from the public and other federal agencies. The report and the comments received will serve as the basis for the 2015 Dietary Guidelines for Americans. The departments are expected to release the updated Dietary Guidelines before the end of this year.

Contact: Susan K. Bishop

Association Co-sponsors Hill Briefing on Heart Research Continuum

On April 28, the association joined with Academy Health, Research!America and WomenHeart: the National Coalition for Women with Heart Disease in sponsoring a Capitol Hill briefing on “From Discovery to Delivery: Research at Work Against Heart Disease.” Speakers addressed all aspects of the heart research continuum, including basic, clinical, population-based, health services and translational research.

American Heart Association volunteer and associate chair of Research at Virginia Commonwealth University, Shoba Ghosh, Ph.D., was one of the briefing’s participants. Dr. Ghosh described her studies as a basic scientist working on heart disease and also shared her personal story that drives her research.

Contact: Claudia Louis

Final Congressional Budget Resolution Includes Research Reserve Funds

Recently, the House and the Senate agreed to a compromise budget resolution for the first time since 2009. While the document outlines discretionary spending caps for 2016, it is up to the appropriators to actually allocate funds to the federal agencies.

The association helped ensure that final resolution contained two research reserve funds that were deficit-neutral. The first, sponsored by Senator Jerry Moran (R-KS) and approximately 30 co-sponsors, promotes federal investments in precision medicine and biomedical research, including prevention, treatments and cures for diseases or conditions such as Alzheimer’s and other life-threatening or chronic illnesses. The second, sponsored by Senator Richard Durbin (D-IL), has a broader scope and includes biomedical research, basic energy research, innovative solutions and American competitiveness. Both research funds were adopted by the Senate.

Contact: Claudia Louis, Sue Nelson

Leadership Meet with Administration on Precision Medicine

On May 11, association leaders met with the Obama Administration to discuss potential areas of collaboration between President Obama’s Precision Medicine Initiative and the American Heart Association’s Cardiovascular Genome-Phenome Study (CVGPS). CEO Nancy Brown, President Elliot Antman, M.D., President-Elect and Research Committee Chairman Steven Houser, M.D., and Chief Science and Medicine Officer Dr. Rose Marie Robertson attended the meeting.

The president’s initiative, which was announced in January, aims to collect genetic information from 1 million or more Americans to develop personalized treatments and prevention for cancer and other diseases.

CVGPS offers researchers access to large volumes of genetic data as well as other biological and population health data from leading scientific studies. By providing this information, the association hopes to speed the discovery of more personalized treatments and prevention for heart disease and stroke.

At the meeting, the administration briefed the association about their ongoing efforts to get the initiative off the ground. Association volunteers and staff, led by President Elliot Antman, described our work on the CV-GPS and answered questions. The Obama Administration intends to continue to work to educate the public about precision medicine and asked for our help in telling the cardiovascular side of story.

“Both of these important scientific research efforts can make a tremendous difference in our nation’s health, and we think there may be some areas where we can work closer together to save and improve even more lives,” American Heart Association CEO Nancy Brown said.

Contact: Sue Nelson

Association-Managed Coalitions Sponsor Hill Briefing on Health Equity

The National Coalition for Heart and Stroke Research, and the NHLBI Constituency Group, two coalitions managed by the association, sponsored “Medical Research to Achieve Health Equity, a Capitol Hill briefing on April 8.

Volunteer Dr. Christopher O’Connor, chief executive officer of Inova Heart and Vascular Institute and professor of medicine at Duke Clinical Research Institute, participated in the briefing and discussed heart failure’s connection to health equity.

Dr. Gary Gibbons, director of the National Heart, Lung and Blood Institute (NHLBI), provided the key note address on the topic. Other issues discussed in relation to health equity included: asthma and sleep health disparities.

Contact: Claudia Louis

Health Care Learning and Action Network

In March, the Department of Health and Human Services (HHS) launched the “Health Care Payment Learning and Action Network.” This new initiative will enlist the assistance of public and private payers, purchasers, providers, consumers, and states in the department’s ongoing effort to drive better care, smarter spending, and a healthier population. It will also help accelerate the transition of our nation’s health care system to one that emphasizes value of care rather than volume of services provided. HHS has set a goal of tying 85 percent of all Medicare fee-for-service payments to quality or value by 2016 and 90 percent by 2018.

The American Heart Association looks forward to participating in the network to ensure that patients with cardiovascular diseases receive high quality, patient-centered, coordinated care as HHS transitions to new ways of paying for health care.

Contact: Kevin Kaiser


21st Century Cures Update

In April 2014, Chairman Fred Upton (R-MI) of the House Energy & Commerce Committee and Rep. Diana DeGette (D-CO) launched “21st Century Cures.” This initiative aims to take a comprehensive look at the cycle of cures – from discovery to development to delivery. Over the past year, this effort has engaged patients, health care providers, innovators, regulators, and researchers to explore ideas that advance biomedical research and bring new drug therapies and products to patients.

In January, the committee shared its first version of the bill aimed at achieving this goal and accelerating the time it takes for medical breakthroughs to reach patients, particularly those with unmet medical needs. The first draft included proposals to empower patients by incorporating their perspectives into the regulatory process, modernizing clinical trials, streamlining drug and device approval processes, and investing in the National Institutes of Health(NIH).

Following the release of the draft legislation, the association provided comments to the committee, echoing our commitment to the bill’s overall goals and the need to create new public-private partnerships which could help bring new cures and treatments to patients. We also urged the committee maintain necessary patient safety protections and ensure the efficacy of all medical products in any final legislation. The association requested the bill include language on telestroke, which expands the use of telemedicine in the treatment of stroke, and create new incentives for the development of high impact preventative medicines.

Last month, the committee released an updated draft and heard testimony from representatives of the NIH and Food and Drug Administration. Although the latest version did not include the association’s specific requests for the expanded use of telestroke and incentives for developing new high impact preventative therapies, the bill would authorize an additional $10 billion in funding over five years and $1.5 billion over the next three years to the NIH. The committee reported out the bill on May 14 and intends to have a full committee markup the week of May 18.

Contact: Kevin Kaiser

Elementary and Secondary Education Act and the Fitness Integrated into Teaching Act

The past few months have been busy on the physical education front. The Senate Health, Education, Labor and Pensions Committee began consideration of the “Every Child Achieves Act,” a bipartisan bill which updates all K-12 education policies. When the bill was initially presented before the committee, it included physical education as a core subject, but eliminated the Physical Education Program (PEP), which is the only source of dedicated federal funding for physical education.

The association worked hard to support an amendment by Sen. Tammy Baldwin (D-WI) that restored the PEP program. The amendment was adopted and the committee passed the bill unanimously. With PEP remaining strong and physical education added as a core subject, the association supports the bipartisan bill. The full Senate is expected to consider the bill in early June. The House bill, which completely eliminated physical education, stalled during House floor debate earlier this year.

The Fitness Integrated into Teaching Act (FIT Kids) was reintroduced April 23 by Reps. Ron Kind (D-WI) and Patrick Meehan (R-PA), and Senator Kirsten Gillibrand (D-NY). This legislation would:

  • Restore the 37 percent cut PEP sustained in the FY2015 funding bill, allowing the Department of Education to award new grants again;
  • Enhance and strengthen the PEP program by requiring local educational agencies to annually evaluate the curriculum and report the results of fitness assessments, which can help leaders improve physical activity within their schools and communities; and
  • Support professional development for health and physical education teachers, which helps them to promote healthy lifestyles and physical activity.

Moving forward, we will continue advocating for strong physical education policies in the Every Child Achieves Act, as well as look for opportunities to advance FIT Kids in this Congress.

Contact: Kristy Anderson

SGR Update

After years of temporary fixes, legislation to provide a permanent fix to the Sustainable Growth Rate (SGR) was finally passed by Congress and recently signed into law by President Obama. The new law permanently repealed the faulty formula used by Medicare to pay physicians for their services.

The new model, dubbed the “Merit-Based Incentive Payment System,” is designed to move away from traditional fee-for-service and begin paying physicians based on the quality of care they provide. The system will assess the performance of physicians and base their payments on their performance in four categories: quality; resource use; meaningful use of electronic health records; and clinical practice improvement activities.

As the new system is phased-in over the coming years, the association will work to ensure that the new payment system results in the delivery of high quality, patient-centered health care for all patients.

Contact: Kevin Kaiser

Trauma Systems and Regionalization of Emergency Care Reauthorization Act

Congress continues to work to pass the Trauma Systems and Regionalization of Emergency Care Reauthorization Act. This bill, which quickly moved through in the House of Representatives and passed in March by an overwhelming vote of 382 to 15, was recently re-introduced in the Senate by Senator Jack Reed (D-RI) and Senator Patty Murray (D-WA).

The association has connected with its partners in Washington, as well as advocates in key states, to make sure this bill passes the Senate and reaches President Obama’s desk. A key provision in the legislation would reauthorize funding for the regionalized systems for the emergency care response program. This program would support the design, implementation, and evaluation of emergency medical and trauma systems so that patients suffering acute cardiovascular conditions receive the care they need, where and when they need it. Similar provisions were included in our Stop Stroke legislation and subsequently, in the Affordable Care Act.

Contact: Kevin Kaiser

Affordable Care Act Update

The second open enrollment period for the Health Insurance Marketplaces ended on February 15. In the five years since the Affordable Care Act (ACA) was enacted, 16.4 million people have gained insurance coverage, including 11.7 million consumers who selected plans through the federal and state-based marketplaces. The uninsured rate is now at the lowest level in history. The association continues to work to help spread the word about new coverage options to the uninsured, to defend the law, and to work on improving the law for patients with heart disease and stroke. Here are the latest highlights:

  • More than 11.7 million additional people are enrolled in Medicaid and the Children’s Health Insurance Program (CHIP), an approximate 20.3 percent increase over the average monthly enrollment for July through September of 2013. States where Medicaid eligibility was expanded under the ACA saw the largest increase at 27 percent, while states without Medicaid expansion saw only an 8 percent increase for the same period.
  • March 23 marked the fifth anniversary of the ACA. In honor of the anniversary, volunteer, You’re the Cure advocate and stroke survivor AmandaJean Beaulieu of Minneapolis, Minn. shared her story about how she was able to gain affordable coverage under the law at an event on the Capitol steps. The White House also released a report describing how the law is benefitting many Americans. State-by-State information about the impact of the law is also available.
  • We continue to submit commentsadvocating for regulatory improvements to the ACA that will meet the needs of patients with heart disease and stroke. The latest comments focus on improvements to the summary of benefits and coverage. We are also working with the National Association of Insurance Commissioners to update their model legislation related to health plan network adequacy.

Contact: Stephanie Mohl


West Virginia Passes CPR in Schools Legislation

In February, West Virginia became the 21st state to pass a law requiring national guideline-based CPR training for high school graduation. With the passage of this legislation, approximately 17,500 additional students per year will be trained in CPR.

Contact: Douglas Dunsavage

Three More States Require Pulse Oximetry Screening for Newborns

Adding to the number of states that require pulse oximetry screening for newborns, Mississippi and Rhode Island have adopted regulations requiring this lifesaving screening for critical congenital heart defects (CCHD). Additionally, Washington Governor Jay Inslee signed Substitute House Bill 1285 into law in April, ensuring that all newborns in the state will be screened for CCHD using pulse oximetry.

Contact: Lucy Asdourian

Idaho Invests $4.7 Million in Tobacco Control Programs

This year, Idaho made tobacco a funding priority and appropriated $4.7 million for tobacco prevention and cessation programs. While this investment falls short of the $15.6 million recommended annual spending for Idaho, $4.7 million is one of the state’s highest funding levels ever for tobacco prevention.

Contact: Chris Sherwin

New Hampshire and Montana Expand Access to Medicaid

Elected officials in New Hampshire and Montana successfully moved to expand Medicaid to assure their state's most vulnerable populations are now afforded the opportunity to receive quality healthcare coverage. In New Hampshire, this will result in about 50,000 more people receiving quality healthcare coverage, while approximately 70,000 in Montana will now be able to receive coverage that was previously unavailable to them.

Medicaid is already an important source of health insurance coverage for patients with heart disease, stroke, and other cardiovascular diseases (CVD) in New Hampshire and Montana, and through the recent efforts to expand Medicaid, it will become an even more important source of coverage for uninsured adults with or at-risk for CVD.

Contact: Lucy Asdourian

More States Take Steps Toward Comprehensive, Quality Systems of Care

Wyoming, North Dakota, Arizona, Kentucky and New Mexico passed legislation that recognizes all three tiers of stroke facilities (Comprehensive Stroke Centers, Primary Stroke Centers and Acute Stroke Ready Facilities) and requires EMS authorities to develop and implement transport protocol plans for acute stroke patients. The legislation passed in Wyoming also formally recognizes STEMI facility designations and requires EMS authorities in the state to develop transport protocol plans for STEMI patients.

Washington, D.C.’s Stroke System of Care Act officially became law on March 10. In addition to achieving the American Heart Association’s policy goal for stroke facility designations and EMS protocols, this new law creates a centralized stroke registry and requires that all three tiers of designated facilities report data to it.

Mississippi and North Dakota have also garnered funding for statewide stroke and STEMI registries. Mississippi’s state budget bill was signed into law with $500,000 included for the development of statewide stroke and STEMI registries in the state. North Dakota finalized its State Department of Health budget, which includes $200,000 that will be used for the enhancement and implementation of the statewide STEMI registry and to further data collection and analysis of the data around STEMI heart attacks.

Contact: Douglas Dunsavage

Shared Use Bills Signed into Law in West Virginia and Iowa

The West Virginia State Legislature unanimously passed “Shared Use Limited Liability Protection for Schools” (SB 238), effectively removing liability when schools allow the general community or other organizations to use their playgrounds, gyms and other facilities. Ensuring equal access to safe places to play in Appalachia is a key strategy to increase physical activity, and everyone involved is excited to see schools offer new opportunities to their community in the near future.

The Iowa State Legislature also unanimously passed a law alleviating liability concerns for schools and municipalities when they allow the general community or other organizations to use their playgrounds, gyms, and other facilities. A coalition of local organizations joined forces under the banner Open the Doors to Health: Bridging Solutions to a Healthier Iowa and worked to garner support from across the state to improve access to safe places to play. The new law was signed by Governor Branstad on April 1.

Contact: Tim Vaske

Advocates Gather at Regional Meetings as Voices for Healthy Kids

In March and April, the Voices for Healthy Kids initiative hosted four regional advocacy orientations, engaging more than 190 activists in hands-on training, capacity building, and skill building around strategic advocacy foundational skills. These trainings were held in Rhode Island, Indiana, Alabama and Oregon, with participants hailing from a total of 37 states and Washington, D.C.

Attendees shared their depth of community and stakeholder experiences, and also explored potential opportunities for alignment and involvement with existing campaigns. American Heart Association staff and stakeholders from other organizations learned more about how they can accelerate their current work with support from the Voices for Healthy Kids Strategic Campaign Fund and tools to advance public policy efforts in their communities. Participants have consistently rated the training component on “Health Equity in Public Policy” as a highlight of the orientations.

Voices for Healthy Kids, a joint initiative of the Robert Wood Johnson Foundation and American Heart Association, works to help all young people eat healthier foods and be more active. By engaging, organizing and mobilizing people in communities across the United States, Voices for Healthy Kids helps make the healthy choice the easy choice in the places where children live, learn and play.

Contact: Kim Milbrath

Media Advocacy Contacts

Retha Sherrod
Director, Media Advocacy
(202) 785-7929

Samantha Carter
Associate Communications Manager, Media Advocacy
(202) 785-7935

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