All Advocacy Articles

Give a Fuller Life

“Give a Fuller Life” is Mended Little Heart’s new and innovative campaign featuring Max Page, a real 11-year-old boy who was born with a CHD.

The animated short follows a day in the life of Max. As you pledge more money, Max’s day gets more joyful, the colors become richer, and the music more beautiful.

Watch Max’s day out at http://www.giveafullerlife.com/ and share with #GiveAFullerLife.

Credits: Campaign idea by Saatchi & Saatchi New York, animation by Oscar-nominated Studio AKA + Blacklist, music by Stabbiolo Music, sound design by Post Human, editorial by Cosmo Street Editorial.

Read More

Webinars

 

Educational Webinars

 

Mended Hearts and Mended Little Hearts Advocacy Priorities

Presented by: Andrea Baer, MS, Mended Hearts Director of Patient Advocacy 

In early 2016, Mended Hearts and Mended Little Hearts advocates voted to select the organization’s national advocacy priorities. Through this webinar you will have the chance to learn about the five chosen priorities, the challenges that patients and families face, and why the organization believes that through advancing these five priorities, Mended Hearts and Mended Little Hearts will be able to improve the lives of heart patients across the lifespan.

To access this webinar, click here

To access the PDF copy of the presentation, click here

Eliminating Barriers to Innovative Medicines

Presented by:   Scott Leezer, Director of Government Affairs, The Federal Group; Mike Capaldi, AVP, Cardiovascular Public Affairs for Sanofi US

There are many factors that may limit a cardiovascular patient’s ability to access the newest, innovative prescription medications. Accessing affordable treatments is vital for all Americans, especially for those with chronic, potentially life-threatening conditions, such as cardiovascular disease. This webinar will cover what Mended Hearts can help do to ensure that all cardiovascular patients have access to the best treatments available.

To access this webinar, click here

To access the PDF version of the Specialty Pharmacy piece of the presentation, click here

To access the PDF version of the Eliminating the Barriers of the presentation, click here

The 21st Century Cures Act: Why is it important?

The pace of scientific advancement over the past two decades, including the mapping of the human genome, has been impressive, giving us a myriad of genetic clues about the underpinnings of disease. Translating these discoveries into new treatments for patients, however, has proven to be difficult. The 21st Century Cures Act accelerates the discovery, development and delivery of life saving and life improving therapies, and transforms the quest for faster cures. Through this webinar you will learn why this is vital to cardiovascular patients across the lifespan.

To access the PDF version the presentation, click here

Expanding Access to Cardiac Rehab

Cardiac Rehab has been shown to be a vital part of recovery and long term success after a cardiac event. Despite this fact any people do not have the ability to access cardiac rehab. One of the advocacy priorities of Mended Hearts is to expand the access to cardiac rehab to improve outcomes. During this webinar we will cover the importance of cardiac rehab, the barriers to access for patients, and how Mended Hearts can help.

To access this webinar, click here

To access the PDF version the presentation, click here

Mended Little Hearts Webinars

It’s Open Enrollment Time: Tips for Choosing Health Insurance

Stephanie Mohl of the American Heart Association speaks about key decisions when choosing health insurance, new insurance options, and other helpful tools.

Exercise and Congenital Heart Disease

Dr. Nicolas Madsen talks to CHD parents, patients and families about exercise for the CHD patient.

The Economic Burden of Congenital Heart Disease Treatment on Families

Jean Connor PhD, RN, CPNP, Director of Nursing Research for Cardiovascular & Critical Care Services at Children’s Hospital of Boston, will present information on the economic burden of congenital heart disease treatment on families. Rising healthcare costs and cost shifting by employers, healthcare organizations and insurers have resulted in higher out-of-pocket payments for families who have insurance. For families of children with congenital heart disease (CHD), medical and non-medical costs associated with the condition begin almost immediately. Medical and surgical advances in the treatment of CHD have allowed previously life-threatening defects to be managed as chronic illnesses. This webinar will review research conducted by Jean Connor on the meaning of cost for families of children with CHD.

Cardiac Catheterization

In this webinar, Dr. James Kuo of Cook Children’s will talk about cardiac catheterization. Many children with congenital heart disease will need a cardiac catheterization at some point in their lives, and this can be scary for kids and their families. Dr. Kuo will explain what cardiac catheterization is, why it is done, how it is done, and what else can be done during a catheterization. We hope this information will make parents and caregivers feel more empowered when making choices in caring for their children.

Congenital Heart Defect 101

Learn about some of the major structural heart defects and how they occur. This is an overview and can help you understand these defects so you can give support to others and have a better understanding of CHDs in general.

Common Rhythm Issues in Children

Presented by Beth Jarosz, RN, MS and Vicki Freedenberg, RN, PhD of Children’s National Heart Institute.

Trans-catheter Valve Replacement in Children

This webinar explains Trans-catheter valve replacement in children and teens—what it is, how it works, and the risks and benefits.

Neurodevelopmental Issues in CHD Kids

In this webinar, Dr. Brad Marino talks about neurodevelopmental issues that can happen in children with congenital heart defects, how parents can recognize them and what resources are available to parents and caregivers.

Mended Hearts gratefully acknowledges the support of Amgen, AstraZeneca, Edwards Lifesciences Foundation, Novartis, and Sanofi Regeneron.

Read More

Contact Your Congressperson

Your voice is important to the lives of millions of cardiovascular patients across the nation. Each one of you have a story to tell and Mended Hearts and Mended Little Hearts wants to encourage you to use your story to make a difference.

You can get involved in sharing your story in a variety of ways. Here are some tools to use when reaching out and connecting with your policy makers. Building a relationship with your representatives is important to having your voice heard on important policies. Remember: Your representative wants to serve their constituents and your voice is important.

Find your Legislators:

  • Find your Senators here
  • Find your House of Representative here

 

Act Now!

Join Mended Hearts and Mended Little Hearts Advocates as we ask for:

  1. The ACE Kids Act is designed to help the nation’s most medically vulnerable children, those with complex medical conditions (a.k.a. medical complexity) who are on Medicaid. The bill would also improve care coordination, helping relieve the burden on the parents, guardians and other family members of these children.
  2. Funding for Research – As you begin working on appropriations requests for FY2018, we ask that you show your support for continued robust funding for heart disease, stroke, and congenital heart disease-related public health research and surveillance initiatives at the National Institutes of Health and Centers for Disease Control and Prevention.
  3. Prescription Drug and Medical Device User Fee Act Reauthorization (P/MDUFA) – People with chronic and rare diseases and disabilities rely on the FDA to access innovative, safe, and effective treatments. Not only do user fees provide the funding for FDA to quickly review products, but the current user fee agreements provide significant improvements and advancements to the health care community that simply cannot wait. Mended Hearts and Mended Little Hearts advocate for re-authorization in a timely fashion.

Contact your Legislator TODAY!

Find out more information and get involved with our Partner Toolkit
For a Sample email click here
For a sample phone message click here

 

Tools to talk to your legislators:

Read More

Priorities

Mended Hearts and Mended Little Hearts Advocacy Priorities

  1. Access to innovative cardiovascular disease treatments and devices. Read the official issue brief here.
  2. Medication adherence and medication therapy management.
  3. Promote, ensure access to and expand the use of cardiac rehabilitation. Read the official Issue Brief .
  4. Reducing health disparities in congenital heart disease
  5. Encouraging innovation in pediatric devices for treatment of congenital heart disease

For a full explanation of the Mended Hearts/Mended Little Hearts advocacy priorities please click here.

 

Read More

Initiatives

The following are advocacy initiatives that Mended Hearts and Mended Little Hearts have taken and/or supported in 2016-2017:

  • Members of Congenital Heart Public Health Consortium Policy Committee are represented on American Heart Association’s National Advocacy Coordinating Committee
  • ACE Kids Act: Working to establish the ACE Kids Act in the 115th Congress
  • Supporting the FDA User Fee Re-Authorization 2017
  • Members of the National Health Council
  • Members of the Person and Family Engagement Network
  • Participate on the WISH (Working to Improve School Health) policy committee
  • Supported and sent representatives to Pediatric Congenital Heart Association’s Legislative Conference advocating for congenital heart disease research funding (NIH and DOD) and surveillance (CDC)
  • 21st Century Cures Act: Signed on to letters, grassroots advocacy campaign
  • Supported the Medical Debt Relief Act of 2015
  • Participate in the AFib Optimal Treatment Task Force and efforts to improve anticoagulation of older patients with AFib. Supported report language in the FY 2016 Labor-HHS Appropriations bill to help Afib patients understand the need for anti-coagulation and correct misunderstandings of risks associated with falling
  • Signed on to a funding letter for the NCBDDD (National Center on Birth Defects and Developmental Disabilities)
  • Join with the American Heart Association, the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR) and the National Association for Medical Direction of Respiratory Care (NAMDRC) to support a piece of legislation to improve cardiac rehabilitation utilization among women and minorities
  • Supported the federally-funded Rural and Community Access to Emergency Devices Program
  • Supports the Congenital Heart Futures Act Re-Authorization
  • Supported the Newborn Screening Saves Lives Re-Authorization Act
  • Signed on to legislation in support of Cardiac Rehab in Women and Minorities
  • Represented the patient voice in the Congressional Directed Medical Research Program for FY2014 and FY2015
  • Represented on the National Birth Defect Prevention Network, Parent Advisory Committee and the Advocacy Committee
  • Supported the National Coalition for Heart & Stroke Research for FY2017 funding for the CDC and the NIH

Read More

Website design by madison/miles/media