FRANKFORT, KY (Sept. 20, 2018) – Bridgett Howard lived with spina bifida for 32 years before pancreatitis sent her to the hospital where she developed and died from bedsores – in nine days.
That’s what her father, Tom Howard of Salyersville, said while testifying before yesterday’s meeting of the Interim Joint Committee on Health and Welfare and Family Services.
“This doesn’t need to happen,” he said, adding that Bridgett never developed a bedsore while under her mother’s care for more than three decades.
Howard was joined by Rep. John Blanton, R-Salyersville, who introduced legislation in 2017 relating to pressure sore treatment and prevention, named the Bridget Ann Howard Act (House Bill 297). The men’s testimony came at a meeting dominated with issues concerning Kentucky’s most vulnerable citizens, particularly children, and public policies to protect them.
Two of the state’s top pediatric oncologists testified at the meeting about the Kentucky Pediatric Cancer Research Trust Fund. The fund was created in 2015 with the passage of Senate Bill 82 and appropriated $5 million in the current biennium budget. The appropriation spurred a private donor to contribute an additional $6 million to the fund, said Jamie Ennis Bloyd, the president of the fund’s board.
Dr. John D’Orazio of the University of Kentucky said his school is spending the money on two research projects dealing with leukemia, one with brain tumors and one with sarcomas.
“Thank you for helping us reduce the burden of disease caused by pediatric cancer in the commonwealth,” D’Orazio said to the committee members.
Dr. Ashok Raj of the University of Louisville testified while wearing a sports jacket of gold ribbons given to him by a patient. He explained that the international awareness symbol for childhood cancer is the gold ribbon.
Raj said U of L is spending part of the money on CAR T-cell therapy. It is a type of treatment in which a patient's T cells, a type of immune system cell, are changed in the laboratory so they will attack cancer cells.
“I know it is kind of the nerd in me talking, but when you talk about the CAR T-therapy that, to me, is incredibly exciting,” said Sen. Ralph Alvarado, R-Winchester, who is a pediatrician. “I try to emphasize that for all of the members of this committee to understand. This is revolutionary stuff.”
The committee also heard an update from the Child Fatality and Near Fatality External Review Panel. The panel was established with the passage of House Bill 290 during the 2013 Regular Session after news reports about Kentucky leading the nation in the number of caregiver-related child deaths.
“What this (panel) does best is to try to identify gaps in the system,” said retired Jefferson County Family Court Judge Paula Sherlock, who serves on the panel and testified before the committee. “What are emergency rooms not doing? What is the Cabinet (for Health and Family Services) not doing? What are the courts not doing?
“This is a forum where we can put it all on the table and look at it and not in the blame game but be in the let’s fix this game.”
Sherlock said drug and alcohol abuse leads to many injuries and deaths, prompting Sen. Danny Carroll, R-Paducah, to ask if there should be a law requiring doctors to report suspected drug and alcohol abuse to police. He said he considered such legislation a couple of years ago. Panel member Dr. Jaime Pittenger, who also testified, said the fear was that it would discourage parents from sending their child to the pediatrician or being honest with the doctor.
Committee Co-chair Rep. Addia Wuchner, R-Florence, said the review panel and the pediatric abusive head trauma legislation (House Bill 285) passed during the 2010 regular session have become national models.
“When we as legislators collaborate and work with everyone together, I think we come up with the best solution,” Wuchner said. She added that another tool Kentucky has to combat child neglect is the Prevent Child Abuse Kentucky organization.
“We are going to dovetail nicely with the prior presentation because what we do is prevention,” said Jill Seyfred, the organization’s executive director. “We try to catch the kids upstream. We don’t do treatment. We don’t do intervention. We are prevention in all of its form.”
She said the organization’s programs include a new partnership with a managed-care group and the state hospital association that focus specifically on parents of newborns before they leave the hospital. It is designed to promote safe sleep practices and prevent head trauma.
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