Navigation Links
Dayton Area Cancer Patient Travels to Capitol Hill to Push for Better Health Care Access and Care Coordination
Date:6/17/2013

(PRWEB) June 17, 2013

One local family is taking their story to Capitol Hill to deliver an important message to their members of Congress: at a time when access to care is improving for millions of adults, don’t let care for children falter.

As scientific advances have made it more feasible for children to survive serious conditions, a growing number of children and their families face the realities of managing very complex medical conditions. Colin Beach, 13, has bilateral hereditary retinoblastoma, a rare condition in which malignant tumors develop in the eye. He and his family will meet with members of Congress to share their personal experiences in coordinating multiple doctors, therapists and hospitals.

The family’s visit with their members of Congress will coincide with the release of a special report that looks at a growing sub-population among children: the medically complex. Nationally, of the 32 million children who rely on Medicaid, an estimated 6 percent of those children have complex medical conditions and account for 45 percent of all Medicaid spending on children.    

“As much as we hope every child is healthy, it is the tough reality that kids get sick or injured and need specialized care. Kids need and deserve experts, technology, medicine and care designed specifically to meet their needs,” say Vicki Giambrone, vice president for strategic partnerships at Dayton Children’s. “The research is clear, having access to pediatric experts improves outcomes for kids and we believe every child deserves access to that kind of care.”

The Beach family knows well the critical impact that access to specialized pediatric care has had for Colin, and the importance of ensuring access for all families by protecting and modernizing Medicaid. At five months old, Colin developed what his parents thought was a lazy eye. While he was at his six month check-up, the doctor examined his eye and discovered that he had bilateral hereditary retinoblastoma. In Colin’s case, there were 2 tumors in his right eye and 9 in his left causing his left eye to go blind.

Colin started off getting four and six cycles of chemotherapy then had laser therapy done after each chemo session. Fortunately, this stopped all of the tumors and eventually allowed all of them to completely disappear.

He might have a lifetime of being blind in one eye, but that and over 30 surgeries have not stopped him. He has learned to accept it as part of his life and is making the absolute best of it.

“We are incredibly grateful that Colin was able to get such great pediatric care from the specialty doctors and nurses here at Dayton Children’s,” said Maureen Beach, “In Colin’s case, it was crucial for him to receive special care immediately and that is exactly what they were able to do here. We’re going to Washington D.C. and sharing our story with the legislators to ensure that all kids across the country will be taken care of the way Colin was.”

President and CEO of the Children’s Hospital Association, Mark Wietecha, agrees that advances in care are invaluable, and notes children are surviving conditions that would not have been survivable 20 years ago. The lack of systemic care coordination, however, creates missed opportunities for optimal care.

“Whose job is it to make sure the primary care physician, the nephrologist, neurologist, speech pathologist and the orthopedist are all talking to each other and making sure the child patient is getting the best possible care? In too many cases, the answer is no one. Systemic care coordination is largely absent for these children who often cross state lines to receive care from regional providers,” says Wietecha.

This summer, the Association will advance a data-driven framework for national pediatric networks that would achieve better care coordination for medically complex children. “We want all of our patients to live a great life. For that reason, we stand together with our families to insure that legislation allows our kids to receive the resources and care they need,” says Giambrone.

About Dayton Children’s

One of only 45 independent freestanding children’s hospitals in the country, Dayton Children’s is the region’s only medical facility dedicated to children. Accredited by The Joint Commission and serving 20 Ohio counties and eastern Indiana, the experts at Dayton Children’s care for more than 290,000 children each year. Consistently recognized as one of the country’s best and most cost-effective pediatric hospitals, Dayton Children’s is home to the Wright State University Boonshoft School of Medicine, Department of Pediatrics and together with the United States Air Force shares the nation’s only civilian-military integrated pe¬diatric training program. For more children’s health and safety information, visit our web site at http://www.childrensdayton.org.

About the Children’s Hospital Association

The Children’s Hospital Association advances child health through innovation in the quality, cost and delivery of care. Representing more than 220 children’s hospitals, the Association is the voice of children’s hospitals nationally. The Association advances public policy enabling hospitals to better serve children, and is the premier resource for pediatric data and analytics driving improved clinical and operational performance of member hospitals.

For more information on Family Advocacy Day, visit http://www.childrenshospitals.net, or follow the families on Facebook at http://www.facebook.com/speaknowforkids or Twitter, @speaknowforkids, #FAD13.

Read the full story at http://www.prweb.com/releases/2013/6/prweb10836137.htm.


'/>"/>
Source: PRWeb
Copyright©2012 Vocus, Inc.
All rights reserved

Related medicine news :

1. Ohio Auto Accident News: Dayton Car Accident Negligence Lawsuit Filed By Wright & Schulte LLC On Behalf of North Carolina Man
2. Exposure to Secondhand Smoke May Lead to Worsening of Pediatric Kidney Disease; Pediatric Nephrology Publishes Dayton Children’s, Johns Hopkins Joint Study
3. Net Worth Business TV Announces May Air Dates for Dayton, Ohio
4. National Camp Series (NCS) Associate and Retired NFL Kicker Mike Hollis of ProForm Kicking Academy Joins Kicking For The Dream’s Effort to Fight Ovarian Cancer
5. Voices Against Brain Cancer Commends Family For Remaining Positive Despite Three Cancer Diagnoses
6. FDA Review Article Provides New Insights into Cancer Immunotherapy Product Development; Beneficial to all Involved in Cancer Treatment
7. Fulgent Therapeutics Announces Their Comprehensive Hereditary Cancer Test Including BRCA1 and BRCA2 Analysis
8. Voices Against Brain Cancer Commends Father of Nine for Running Marathons Despite Diagnosis
9. National Camp Series (NCS) Associate Dave Brader of Husted Kicking Joins Kicking For The Dream’s Effort to Fight Ovarian Cancer
10. Metabolic molecule drives growth of aggressive brain cancer
11. U.S. Supreme Court Invalidates Patents on Breast and Ovarian Cancer Genes
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:5/2/2016)... ... May 02, 2016 , ... Beanfields, PBC, ... by partnering with college students at University of Colorado in Boulder to create ... advertising campaigns class in the School of Journalism, who selected Beanfields as the ...
(Date:5/2/2016)... ... ... “Engineering Bubbles,” an oil painting submitted by Canadian radiology resident Dr. Kari ... the Annual Meeting in Los Angeles. The first annual art forum was a platform ... attendees. , “Through art I hope to educate people about radiology and its ...
(Date:5/2/2016)... ... 2016 , ... Dr. Philip Shindler, dentist in Agoura Hills , now ... past, many necessary dental treatments could require multiple appointments to complete. This could mean ... chair time. Not only could this be inconvenient, but it could also be overwhelmingly ...
(Date:5/2/2016)... ... 02, 2016 , ... This week Omega Institute, a premier nonprofit educational retreat ... through October. Omega is offering a record 370 in-person workshops and new online ... such widespread interest in or need for the knowledge and skills we’ve been cultivating ...
(Date:5/2/2016)... ... May 02, 2016 , ... Visceral fat, also known ... the kidneys, liver and pancreas. If not properly addressed, visceral fat can lead ... Internal Medicine, Medical Oncology and Palliative Care, warns against the dangers of visceral ...
Breaking Medicine News(10 mins):
(Date:4/29/2016)... 29, 2016 Acquisition Expands ... Product Development Capabilities in North America ... . Indegene ( http://www.indegene.com ), ... acquisition of Skura Corporation,s life science business. Skura,s ... sales enablement technology for life science organizations and ...
(Date:4/28/2016)...  While Abbott,s announced purchase of St. Jude ... and stent business, healthcare research firm Kalorama Information ... into patient monitoring.  Kalorama said that patient monitoring ... with double-digit growth expected the next 5 years, ... Patient Monitoring . Abbott Laboratories agreed to ...
(Date:4/28/2016)... 28, 2016 Treato , ... healthcare, announced today that it has been named a ... Vendor in Life Sciences, 2016, Stephen Davies ... report focuses on life-science- oriented analytics, algorithms and smart ... and doctors, confirm medication ingestion, and analyze unstructured information. ...
Breaking Medicine Technology: