Become an advocate
Congenital heart disease (CHD) is a health issue that can affect any child, any race, any socioeconomic status, in any community. This health issue affects not only the child, but the entire family. Pulse oximetry screening on all eligible newborns is a way to detect serious congenital heart disease early. Universal use of this simple test within 24 hours of birth can lead to early diagnosis and treatment for serious CHD, and potentially save lives. There is a need for advocates to spread the word about congenital heart disease and pulse oximetry screening. There is power in advocacy.
Governor Martin O'Malley joins leading Maryland legislators in signing SB 786 and HB 714 into law on May 19, 2011. The bills will help implement congenital heart disease screening for newborns in Maryland. Representatives from Children's National Medical Center, Holy Cross Hospital, and parents Olivia and Kevin Easley who advocated for the legislation attended the signing ceremony.
Watch the video about the signing
Advocacy means to “speak up” or to champion a cause on another’s behalf.
Advocates influence the knowledge, attitudes, and actions of those who are in positions to bring change.
Clinical Advocacy is when physicians, nurses, and other healthcare professionals apply research findings, clinical data, and care to address an identified health issue. They use their clinical expertise to advocate for change. There are two primary forms of clinical advocacy:
- Bringing innovative health care, education, and research programs to the community to address disparities and other serious public health needs;
- Sharing clinical experiences, along with research and data, with public officials to inform health policy decisions.
Currently, the Congenital Heart Disease Screening Program (CHDSP) is offered at only a few birthing hospitals and centers in the world. Clinical advocates can share the benefits, results, findings, and personal experiences associated with the Congenital Heart Disease Screening Program and research studies that support screening. By doing this, healthcare professionals, health professional organizations, and decision makers will become interested in the topic and screening program.
Community Advocacy means garnering support from colleagues, community groups, service clubs, and others. Community advocacy unites people who share a passion for the same cause or issue. Together, community advocates work to bring about change by establishing ties and forming coalitions with others in the community.
To become a community advocate for CHDSP, introduce the program to neighbors, community groups, service clubs, schools, and others and garner their support.
- Talk with like-minded citizens.
- Garner support from community-based or neighborhood coalitions or groups.
- Work with parental groups.
- Bring personal view to the issue by organizing a testimonial at a community meeting.
- Ask healthcare professionals to speak at community meetings.
Legislative Advocacy is using the legislative process to influence public policy at the local, state, or federal levels of government. Every law begins with an idea and elected officials work to create laws from your ideas! Our elected officials count on us to let them know what is important in our lives and communities, and to share with them our ideas about what kinds of policies and laws would most benefit patients and families. Make your ideas known to elected officials by writing letters, making phone calls, sending e-mails, or meeting with the representative or staff members. In May, 2011 the state of Maryland was the first state to pass legislation surrounding pulse oximetry screening for serious CHD. Soon after, the state of New Jersey became the first state pass legislation to mandate screening for all newborns born in birthing facilities.
Advocacy in Action
Advocacy, when engaged to its fullest extent, can change the way we live, work, and go about our day-to-day activities. It can save lives and change society for the better. Advocacy works. Consider the following:
It takes only about 10 letters to get an elected official’s attention on a particular issue, an example of Legislative Advocacy.
One mother whose daughter died at the hand of a drunk driver decided to take a stand and became founder of Mother’s Against Drunk Drivers (MADD); one of the country’s most influential advocacy groups, a type of Community Advocacy.
- An emergency medical physician who helped identify “lap belt syndrome” (injuries that occur when a small child is in a motor vehicle accident using an adult lap belt instead of a booster seat) worked with advocates to pass legislation requiring booster seats for children in his state, a form of Clinical Advocacy.
The Children’s Heart Information Network – www.tchin.org/
Provides information and support to families with children living with congenital heart defects and professionals that work with them.
Children’s Heart Foundation – www.childrensheartfoundation.org/advocacy
The Children’s Heart Foundation (CHF) advocates for increased CHD research and other significant CHD issues in both the private and public arenas.
It’s My Heart – www.itsmyheart.org/
It’s My Heart advocates for those affected by acquired and congenital heart defects by spreading awareness and educating families, health care professionals and organizations, and the community.
Kids with Heart National Association for Children's Heart Disorders – www.kidswithheart.org/
Provides support and educates families of children living with congenital heart defects and increases public awareness of the issues that these families deal with on a daily basis.
U.S. Congress – http://thomas.loc.gov/
A website that makes federal legislative information freely available to the public, such as information about bills, resolutions, committee information, activity in congress, congressional record, and treaties.
National Conference of State Legislatures – www.ncsl.org/
NCSL is a bipartisan organization that provides opportunities for policymakers to exchange ideas on critical state issues. The site includes website links to state legislatures.
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