As Congress decides what provisions will be included in legislation that could impact the health care of all Americans, the Hoffmans, from Lewis Center, Ohio, are traveling to the nation’s capital, June 17-18 along with dozens of other child patients, to meet with lawmakers to ensure health reform legislation works for children too.
The Hoffman family travels to Washington as part of the 2009 National Association of Children’s Hospitals (N.A.C.H.) Family Advocacy Day, an effort to ensure national health reform legislation includes affordable health insurance coverage for all children and access to high-quality, specialized care. Nearly nine million children in the U.S. still lack health coverage. And while millions of children are covered by Medicaid, gaps in access to care exist due to low provider reimbursement for services.
Alyson and Andrea Hoffman, 8-year-old identical twins, keep their parents, David and Melissa, busy juggling all of their activities – softball, junior varsity jump rope, bike riding, swimming, reading and singing in their church choir. Somehow, the girls must find at least an hour each day for a treatment machine they call “Tigger” that pounds their chests clear of mucus, taking nebulizer treatments and swallowing 20 some pills each. Alyson and Andrea do these things because they have been living with the genetic disease cystic fibrosis since birth.
From the time of diagnosis, the family has felt a part of the team with the pulmonary unit at Nationwide Children’s Hospital. What David and Melissa like best about the girls’ care is the emphasis on prevention through nutrition, medication and other cutting-edge therapies. David has become an effective cystic fibrosis advocate and both parents serve on the Nationwide Children’s Hospital Family Advisory Council.
Through the help of Nationwide Children’s proactive care and treatment, coupled with the strength and support of their loving family, Alyson and Andrea are able to live longer, stronger lives.
“The Hoffman’s will be meeting with Congresswoman Kilroy, Congressmen Austria and Tiberi and our Senators to emphasize the importance of including a child-specific benefits package in health care reform,” said Morna Smith, director of federal relations and health policy for Nationwide Children’s. “Their family’s experience demonstrates that an assurance of medically necessary care for children is an essential ingredient if health care reform is to make children better off.”
For more information on Family Advocacy Day and to follow two patient blogs – one written by 15-year-old Melissa Elmer and the other written by 10-year-old Nicklas Nelson – visit www.childrenshospitals,org.
Photos of the families visiting with their members of Congress will be available at http://picasaweb.google.com/nachrinach, 2009 N.A.C.H. Family Advocacy Day.
The National Association of Children’s Hospitals (N.A.C.H.) is the public policy affiliate of the National Association of Children’s Hospitals and Related Institutions. Representing more than 140 freestanding acute care children’s hospitals, freestanding children’s rehabilitation and specialty hospitals, and children’s hospitals organized within larger medical centers, it addresses public policy issues affecting children’s hospitals’ missions of service to the children of their communities, including clinical care, education, research and advocacy. For more information, please visit www.childrenshospitals.net.