Volunteer Testifies Before Senate Panel on Personal Toll of Chronic Diseases
On July 15, American Heart Association volunteer Stephanie Dempsey testified on Capitol Hill about the impact of chronic disease on her life. According to Senate Finance Committee Chairman Sen. Ron Wyden (D-OR), the hearing was held to help kick start a national dialogue on chronic care.
Dempsey, who is 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. 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 the disease at 28 and her mother had quadruple bypass surgery at the age of 48. Dempsey had quadruple bypass surgery at 30 and since then has had another bypass surgery and received 27 stents. During her testimony, she shared with 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.”
She takes 19 medications a day, in addition to doctor-recommended supplements. Fighting back tears, Dempsey said that the strain caused by her health conditions led to her divorce and that she had no choice but to move in with her parents, who now take care of her. Because of her seizure disorder, her parents must drive Dempsey to see her specialists who are more than two hours away.
The lack of coordination between her specialists caused one to prescribe an incorrect medication. It took several days and “much persistence” to adjust her treatment. As a result, Dempsey says she’s now her own healthcare coordinator. “Although I consider myself an educated person, navigating this maze is very difficult and very exhausting. But my life is at stake, so I have no choice except to remain engaged.”
“I am confident that you will not forget me and countless other people when you develop policies that will help all of us,” she added. “Our goals are all the same – to live long, healthy and productive lives.”
Sen. Wyden said at the end of the hearing that he was overwhelmed by Stephanie 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,” he said. “What you heard today from senators on both sides of the aisle is that those days are over…”
Research Volunteer Featured in New Budget Report on the “Faces of Austerity”
On the same day that Stephanie Dempsey offered her Senate testimony, another volunteer, Dr. Shobha Ghosh, represented the association at a Capitol Hill briefing sponsored by the Coalition for Health Funding, of which the association is an active member.
The briefing was held to launch a new coalition report, “Faces of Austerity: How Budget Cuts Hurt America’s Health.” The publication featured various individuals struggling with federal budget decreases, including Dr. Ghosh.
Currently an associate chair for research at Virginia Commonwealth University Medical Center, Dr. Ghosh described her deep-rooted passion for science as a result of watching her mother and older sister suffer and die from heart disease within a span of 10 days, when she was only 11. In her remarks (PDF), Dr. Ghosh emphasized that the "reduction in funding for the National Institutes of Health directly impacts our health, our national economy, our industries, and most importantly our future standing as a beacon of scientific discovery in the world."
On July 31, the Food and Drug Administration (FDA) notified Congress of its intent to release guidance that will ultimately ensure that diagnostic and genetic tests will yield the safe, effective and reliable results that patients and their doctors can trust. The American Heart Association has long advocated for the release of FDA guidance on these tests.
Our growing understanding of genetics’ role in disease has flooded the market with many new tests designed to assess the risk for cardiovascular and other diseases. Many of these tests – even those that are considered “high-risk” – are not regulated by the FDA or any other entity as effective and reliable. Medical professionals have expressed concern about these tests because their advertised claims may not be supported by scientific evidence.
The America Heart Association recognizes that advanced diagnostics hold tremendous promise for patients. However, the increasingly pivotal role of these tests in healthcare makes it imperative that their safety and effectiveness is confirmed by the FDA prior to use, particularly for those of highest risk to patients. The goal of the risk-based framework that was released by the FDA is to reassure patients that diagnostics tests are reliable and set clear parameters for the developers of new tests.
The association looks forward to working with the FDA once the guidance is issued to ensure that patients and their physicians have the most accurate and reliable information when making critical treatment decisions.
FDA Urged to Adopt Strong Nutrition Labeling and Tobacco Regulations
Thousands of American Heart Association advocates contacted the FDA to voice their support for strong nutrition labeling and tobacco regulations. Advocates were responding to two requests for public feedback issued by the FDA earlier this year.
Almost 12,000 You’re the Cure advocates voiced support for the FDA’s draft plan to update the information displayed in the “Nutrition Facts” panel on food products by more prominently displaying calorie information and including the added sugar and potassium content. They also urged the FDA to lower the Daily Value (DV) for sodium and for saturated fat.
In addition, advocates called on the FDA to extend its regulatory authority to include e-cigarettes, cigars, pipe tobacco, nicotine gels, hookah and dissolvables. Almost 8,000 advocates urged the FDA to ban the use of candy and fruit flavorings in these tobacco products and prohibit the use of marketing techniques that target youth.
The FDA is currently in the process of reviewing public feedback and will decide what changes, if any, to make to the regulations before finalizing them. For more information, read our detailed comments submitted to the FDA on both the nutrition and tobacco proposed rules.
In response to a request made by the association, the Centers for Medicare and Medicaid Services (CMS) recently announced the inclusion of a medication adherence quality measure as part of the 2015 Quality Rating System (QRS) beta test measure for health plans in the Health Insurance Marketplaces.
The quality measure will cover blood pressure, diabetes and cholesterol. Inclusion of this medication adherence measure in the QRS set will help provide easily understandable information that is important to a large majority of patients with chronic conditions.
There is significant potential for improving the quality of care through careful medication management. A recent report by a National Quality Forum Task Force ranked medication management in the top five high leverage opportunities for quality measurement. Chronic conditions account for the great majority of patient conditions and create burdensome costs to our health care system. For most of these conditions, medications are a first line of therapy. Poor adherence to medications is a widely recognized factor in the failure of therapy, contributes substantially to higher costs, and has been recognized as America’s “other drug problem.” The inclusion of this measure is a step in the right direction for patients with chronic conditions.
This ongoing effort aims to: increase Americans’ awareness of their excess sodium intake and the impact it has on health; inspire changes in consumer behaviors to reduce sodium intake; and build a base of supporters who will actively engage with decision makers to effect policy changes that reduce sodium in the food supply.
Americans eat more than 3,400 milligrams of sodium, on average each day – more than double the amount that the association recommends for ideal heart health. Sodium is an essential nutrient, but over-consumption can increase the risk of high blood pressure, heart disease, stroke and other health problems.
A new analysis supported by the association’s strategic initiatives funds explores how five of the more prominent tax policy changes, proposed by Congress, could impact association donations.
The analysis (PDF) was designed to help the association shape its lobbing strategies if and when these proposals gain momentum in Congress. Not surprisingly, giving declined under four of the five scenarios examined.
The biggest reduction came under a total repeal scenario where the association could see donations drop by over 8 percent, or $17.5 million. An option that was part of House Ways and Means Committee Chairman Dave Camp’s tax reform plan issued this February would reduce donations by about 4.5 percent – or $9.5 million. The simulations suggest that President Obama’s proposal would have a relatively small impact on the association’s donations with reductions of 1.2 percent or a $2.6 million loss.
It’s very clear from the study that major tax reform could have a chilling effect on charitable giving to the American Heart Association, especially if the tax deduction is eliminated or seriously weakened. Tax reform is not likely to happen in the current partisan political climate; however, the appetite for reform remains and proposals that have been formulated tend to come back in later years. The Federal Advocacy staff will continue to work closely with the Independent Sector to protect the charitable deduction and the vibrancy of the nonprofit sector.
Support for the “Accelerating Biomedical Research Act”
The American Heart Association has endorsed the “Accelerating Biomedical Research Act,” introduced July 24 by retiring U.S. Senator Tom Harkin (D-IA). The legislation authorizes increased funding for the National Institutes of Health (NIH) by adjusting the discretionary budget caps mandated by the Budget Control Act (BCA).
According to the bill summary (PDF), the legislation includes a trigger of $29.9 billion for the NIH, after which appropriators can provide up to $46.2 billion at the end of the seven year BCA period, FY 2015-2021. If the Labor, Health and Human Services, Education Appropriation bill (or any other bill) provides at least $29.9 billion for NIH, that bill can include a specific amount of additional funds.
The budget cap increases to accommodate the additional funds only if those supplemental funds are provided to NIH.
Back in June, the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education approved its spending bill for fiscal year 2015. But proposed amendments on the Affordable Care Act and other issues has stalled the bill, making full appropriations committee and Senate floor action unlikely.
The legislation provides the National Institutes of Health (NIH) with a 2 percent funding increase that fully replaces the agency’s sequester cut, when combined with the FY 2014 increase of $1 billion. Under this funding amount, the National Heart, Lung, and Blood Institute (NHLBI) would receive a 1.5 percent increase, the fourth largest dollar increase among the 27 NIH institutes. The National Institute of Neurological Disorders and Stroke (NINDS) would secure a 1.6 percent increase, at the sixth largest dollar funding increase. In addition, the Health Resources and Services Administration’s Rural and Community Access to Emergency Devices Program, designed to save lives of those who suffer from cardiac arrest, would receive the same amount of funding as its current level of $3.364 million.
While funding for the Division for Heart Disease and Stroke Prevention, WISEWOMAN and Million Hearts was the same as the previous fiscal year, the subcommittee did propose a $16 million increase over last year for CDC’s Office of Smoking and Health.
The report (PDF) released by the subcommittee included language in support for our major priorities (NHLBI, NINDS, CDC HDSPP, WISEWOMAN) similar to what we requested. The House Subcommittee has not acted on its legislation. Final funding for these and other programs will likely not be determined until after early 2015.
The American Heart Association hosted its first annual Corporate Forum Policy Dialogue on July 21 in Washington, D.C. The goal of the forum is to convene corporate leaders who embrace the association’s values in addressing cardiovascular health accessibility, affordability and quality. The forum’s membership is diverse, and includes organizations of all types and sizes from across the healthcare and nutrition sectors.
This first policy dialogue focused on “innovation.” The association brought together varying thought leaders across government and industry to discuss innovation in the traditional context – discovery to market pipeline – as well as innovation in care delivery.
The proceedings of the meeting will be published in the winter edition of the American Heart Association’s Policy Report.
At the end of May, the House Appropriation Committee approved language in their version of the agriculture spending bill that would allow schools to opt out of all meal standards established by the Healthy Hunger-Free Kids Act of 2010, if they could show a decline in revenue – no matter the cause.
The Senate’s agriculture appropriations bill also included language that would delay sodium decreases for school foods until scientific research supports the reduction in children. The legislation also required a report on whole grains with a potential delay in implementing standards, and another report and subsequent technical assistance on plate waste and revenue.
The American Heart Association joined forces with our partners to strongly oppose the language in both the House and Senate bills. We mobilized volunteers who sent more than 35,000 messages and phone calls to Capitol Hill, worked with key media outlets to obtain coverage on the school nutrition standards debate and ran full-page ads in political news publications. Volunteer Dr. Stephen Cook testified on the issue before the Senate Agriculture Committee and authored a USDA blog post opens in a new window on the importance of school nutrition.
To further emphasize the importance of this issue for the association, CEO Nancy Brown sent a letter to all members of Congress, shared an op-ed opens in a new window in her Huffington Post column and attended the Kids’ State Dinner at the White House with President Obama and the First Lady. This highly coveted event recognizes the winners of the Healthy Lunchtime Challenge. As a result of these and many other efforts, the agriculture appropriations bills are now permanently stalled in both chambers.
The path forward on overall federal funding is unclear at the moment, making prospects for waivers on school nutrition standards uncertain. There remains an outside possibility that the House language, the Senate language, or some hybrid could show up in a continuing resolution or an omnibus appropriations bill. However, we have received assurances from our champions that they will not let this happen.
Meanwhile, the association will continue to work tirelessly to ensure that strong nutrition standards in schools remain, while working with principles to find common sense solutions to help schools that may be having more difficulty in meeting the criteria. This work will be particularly important as the Healthy, Hunger-Free Kids Act is up for reauthorization next year, when all parts of the program will be up for negotiation.
The Obama Administration, states and stakeholders are now gearing up for the health insurance open enrollment period, even while challenges to the law continue, along with analysis of the first open enrollment period’s success.
On July22, two different federal appeals courts reached opposite decisions on the question of whether people living in states with a federally-facilitated Health Insurance Marketplace are eligible to receive a tax credit to help make their health insurance affordable. In the D.C. Circuit Court of Appeals, a three-judge panel ruled that the Internal Revenue Service (IRS) could not make tax credits available to consumers living in states with a federally-run marketplace. A few hours later, the Fourth Circuit Court of Appeals upheld the IRS rules making tax credits available to all eligible people, regardless of what state they live in. The American Heart Association joined with the American Cancer Society and the American Diabetes Association in filing amici briefs in support of broad eligibility for the tax credits in both cases, as well as issued press statements following the D.C. Circuit opens in a new window and Fourth Circuit opens in a new window decisions. While the courts continue to resolve their differences, tax credits will continue to be available to eligible consumers in every state and D.C.
Meanwhile, researchers continue to analyze the coverage gains achieved during the first open enrollment period. Data from the Health Reform Monitoring Survey, a project jointly funded by the Robert Wood Johnson Foundation, the Ford Foundation, and the Urban Institute, reveals the following results of the first open enrollment period:
Nationally, the rate of non-elderly adults who were uninsured dropped four percentage points, from 17.9 percent in September 2013 to 13.9 percent in June 2014. This translates to 8 million non-elderly adults gaining coverage during this timeframe.
While all states experienced a drop in uninsured rates, the gains in coverage were not equal across the states, primarily due to whether a state did or did not expand its Medicaid program. States that expanded Medicaid experienced gains in insurance coverage that were three times greater than in states that opted not to expand.
Despite the impressive gains in insurance coverage, one in seven non-elderly adults remains uninsured. Among those individuals, 60 percent said it was because of the high cost of insurance, illustrating the need to further emphasize the availability of financial assistance during the next open enrollment period.
According to the Centers for Medicare and Medicaid Services, as of the end of May, 6.7 million more individuals were enrolled in Medicaid or the Children’s Health Insurance Program (CHIP), compared to the baseline period from July through September 2013, an increase of more than 11 percent.
Other updates on the implementation of the health care law:
In May, the American Heart Association and consumers scored a victory when the Obama Administration clarified through Frequently Asked Questions guidance (PDF) that the benefit-specific waiting periods of some health plans, such as those that require patients to wait for heart transplants, are prohibited. The association argued that such waiting periods were a subterfuge for a pre-existing condition exclusion and should therefore not be allowed.
In late June, the Obama administration announced its proposed rules and guidance for allowing many consumers who are currently enrolled in marketplace insurance plans to be auto-enrolled in the same plan for next year.
According to a new report (PDF) from the Department of Health and Human Services (HHS), an estimated 76 million Americans with private insurance are eligible for newly expanded preventive services as a result of the Affordable Care Act.
HHS also recently reported that consumers have saved a total of $9 billion on their health insurance premiums since 2011, as a result of the ACA’s medical loss ratio (MLR) requirement. The association was heavily involved in the drafting of the MLR rule, which requires insurers to spend at least 80 percent of premium dollars on patient care and quality improvement activities.
The National Association of Insurance Commissioners has created a new subgroup to update its 1996 Managed Care Network Adequacy Model Act. The association is very engaged in the subgroup’s work.
HHS has released updated state-by-state fact sheets about how the health reform law is benefitting people in each state.
Promoting the Physical Activities for Americans Act
The Promoting Physical Activities for Americans Act, formerly the Physical Activity Guidelines Act, was recently passed by the Senate Health, Education, Labor, and Pensions Committee. This bill would require the Department of Health and Human Services (HHS) to regularly update recommendations based on the best evidence on the amount and kinds of physical activity Americans should be engaging in. This bill would also require recommendations for demographics not previously included in the report, such as children and individuals with disabilities.
The American Heart Association worked closely with the members of the Senate Committee on Health Education Labor and Pensions to move this bill forward, and hopes it is the first step toward securing passage out of both chambers before the end of the 113th Congress.
Just prior to the August recess, Congress passed a short-term extension to the transportation bill through May 2015. While the bill itself would have expired on September 30, 2014, the Highway Trust Fund – a dedicated source of revenue for transportation projects – started to run out of money in late July.
The Transportation Alternatives Program, which contains funding for sidewalks, bike paths, trails, and Safe Routes to School, was targeted for elimination during committee and floor consideration. Thankfully those efforts were stopped by advocates and congressional champions, but these programs will likely remain under attack next year as Congress looks toward a long-term funding solution and bill. The American Heart Association continues to work diligently to ensure that the public has access to transportation options that promote healthy living.
Trauma Systems and Regionalization of Emergency Care Reauthorization Act
Congress has been working quickly to pass the Trauma Systems and Regionalization of Emergency Care Reauthorization Act. This bill, which passed the House in June, recently advanced out of the Senate Committee on Health, Education, Labor, and Pensions in late July.
The association has been working with its partners in Washington and advocates in key states to ensure this bill passes the Senate and reaches President Obama’s desk. A key provision in this 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 to ensure 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.
New Mexico Sets Rules for Statewide Stroke and STEMI Registries
After two years of hard work by American Heart Association staff and volunteers, New Mexico has successfully seen the completion of rulemaking on stroke and STEMI registries. These efforts started with legislation requiring New Mexico to recognize stoke and STEMI hospital designations, and shortly thereafter, the team secured funding for the state to build a statewide database to collect patient data.
Hands-on CPR training is now a high school graduation requirement in Louisiana, Oklahoma and Utah, bringing the total number of states that have passed CPR in Schools legislation to 18.
Additionally, the governor of Colorado recently signed a bill creating a statewide grant program of $250,000 to fund CPR instruction in schools across the state. Delaware’s state budget bill, which was signed into law on July 1, also includes an appropriation for CPR training in schools, along with very clear language indicating that psychomotor learning components are to serve as the basis of instruction.
After Kentucky and Ohio passed bills requiring CCHD screening in the spring of 2013, association staff and volunteer advocates worked through the lengthy regulatory process to promulgate rules that require birthing facilities to do the screening using pulse oximetry. Kentucky’s regulation became final on June 6, and Ohio’s followed on June 9.
On June 30, Montana’s newborn screening rule change was certified by the secretary of state. With the adoption of these rule amendments, screening for CCHD using pulse oximetry will be a requirement for all Montana newborns prior to leaving the hospital.
The governor of Wisconsin also recently approved an emergency rule requiring all babies born in the state to be screened for CCHD prior to hospital discharge. As emergency rules are only effective for 120 days, the association will continue to work with the Department of Health Services and the legislature on the permanent rule.
Beginning August 7, all newborns in Texas will also be screened for CCHD using pulse oximetry. Association staff were involved throughout the entire regulatory process and partnered closely with parent advocates to ensure that this life-saving test would be added to the state’s newborn screening panel.
Delaware and Washington Expand Access to Preventive Benefits
In Delaware, the Division on Medicaid and Medical Assistance recently filed a state plan amendment to include U.S. Preventive Services Task Force (USPSTF) preventive benefits in the plans it offers. Extending these services to all Medicaid enrollees at no cost sharing will directly benefit the health of residents, those living with chronic disease, and those at risk.
Washington’s state plan amendment was recently approved by the Centers for Medicare and Medicaid Services. With this approval, Washington’s Medicaid participants will have greater access to critical preventive benefits, including those that can help reduce risk factors for cardiovascular disease.
Virginia Budget Supports Tobacco Cessation/Provides Funding for EMS
Virginia’s final state budget includes language that requires coverage for all approved tobacco cessation services for Medicaid recipients. Access to cessation services is critical to help smokers quit, and the Medicaid population has a much higher smoking rate than the general population. This policy will close a gap that denied full access to these services to a significant population.
The enacted budget also includes $800,000 for EMS to purchase 12-lead ECGs for ambulances. This new appropriation means a total investment of $1.2M over three years for this life-saving equipment.
Communities in Southern States Continue Smoke-Free Progress
From July 1, 2013 through June 30, 2014, twenty local communities in three southern states passed strong smoke-free laws – three local laws passed in Louisiana, three passed in Alabama, and in Mississippi a total of fourteen local laws passed. In fact, more local smoke-free laws passed in Mississippi than in any other state in the country. These laws now protect hundreds of thousands of residents from the proven dangers of secondhand smoke.
Arizona and Colorado Promote Community Physical Activity
School recreational facilities such as gymnasiums, playgrounds, ball fields/courts and tracks can provide children and their families with safe places to be active in their communities. However, schools often close their property to the public after school hours due to concerns about liability in the event of injury. To address these concerns, SB 1336 opens in a new window was signed into law in Arizona, limiting the civil liability of schools, school districts, and governing boards of school districts if they allow either leased or uncompensated use of public school grounds. This gives Arizona schools the encouragement they need to allow community use of school grounds after hours.
In Colorado, the American Heart Association, Colorado Health Foundation, LiveWell Colorado and Bicycle Colorado secured $700,000 of state money for the Safe Routes to Schools program. This money will go to the Department of Transportation, allowing the areas around schools across the state to be made safe for children and their families to walk and bike to school. Most of these funds will be used for improving sidewalks, adding bike lanes, funding crossing guards, and supporting programs to teach children how to safely use the improved infrastructure.
Maryland Children to Benefit from New Health and Nutrition Standards
Tens of thousands of Maryland children who attend licensed child care centers will enjoy healthier drink choices and activities starting next year, thanks to a bill passed by the Maryland General Assembly and signed in May by Governor Martin O’Malley. Learn more about this legislative success here opens in a new window.
Today, about one in three American kids and teens are categorized as overweight or obese – nearly triple the rate in 1963. Seeing a vital need for change in our country’s growing childhood obesity epidemic, the American Heart Association is launching the EmpowerMEnt Challenge (PDF) during National Childhood Obesity Month in September.
The EmpowerMEnt Challenge kicks off September 1 on heart.org/healthierkids opens in a new window and provides families with a fun and easy way to help kids learn to take control of their health. The website features complimentary program resources, including the new EmpowerMEnt Challenge social media group, to help them stay on-track. Over the course of four weeks, families will pursue a different goal each week and will complete the program with a sense of accomplishment and the tools needed to live a heart-healthy life.