State lawmakers in the Hudson Valley have presented a pen certificate to a teenager who inspired legislation that New York Governor Andrew Cuomo signed this month. WAMC’s Hudson Valley Bureau Chief Allison Dunne has more about the health-care measure that could be amended in the legislative session that begins in a few weeks.
In December 2014, Westchester County resident Dream Shepherd underwent a stem cell transplant to battle Sickle Cell Disease and doctors put in a central venous line that went to Shepherd’s heart to administer medication. Democrat Sandy Galef sponsored Dream’s Law in the Assembly. The measure guarantees safe and continued care for patients with a central venous line after being discharged from the hospital.
“And when a patient is discharged from the hospital with a central venous line, they need to have careful medical attention because it can easily become infected,” says Galef. “And, because of the risk, Diana put in a request for a skilled nurse to care for her daughter’s central venous line, but she was denied by her insurance company, leaving her to take care of the central venous line herself. I can just imagine the anxiety that she was going through at that point.”
Diana is Diana Lemon, Shepherd’s mother. Lemon says her daughter needed up to 14 hours of infusions daily, in addition to other medications and care.
“And the last thing I would want on my conscience, God forbid something happened to my daughter, would be she left this world because I was tired or I didn’t do something right with her central line and she got an infection and now she’s gone,” Lemon says. “So I don’t think any caregiver should have that type of weight on them when they’re trying to take care of the one that they love.”
Galef represents Shepherd’s hometown of Ossining.
“What Diana was requesting was absolutely not outrageous. She wanted her daughter to be cared for by a professional as she was cared for in the hospital,” Galef says. “But, to make matters worse, the type of care Dream needed would have forced Diana to leave her job, leaving her with no source of income, so there are all kinds of ramifications to this.”
Here’s 15-year-old Dream Shepherd, standing alongside her mother and baby sister.
“I’m really happy, and I hope that it’ll help many, many people,” Shepherd says.
Democrat David Carlucci, whose 38th District includes Ossning, sponsored the bill in the Senate.
“We could have the best health care in the world, but if we don’t have a discharge plan that makes sense, it doesn’t work,” Carlucci says. “And Dream and her mother were put in an impossible situation, one where, unfortunately, studies show that 80,000 Americans each year suffer a serious infection and wind up right back in the hospital from a central venous line that’s not properly maintained and cleaned.”
According to the New England Journal of Medicine, about 28,000 people die each year due to bloodstream infections from a central venous line. Carlucci and Galef presented Shepherd with a framed certificate of the law she inspired.
“We have, from the governor, a signed, we call this a pen certificate, but this is the actual law and the pen that the governor used to sign the law,” Carlucci says. “And we thought it fitting that we would present this to Dream because she was the inspiration, she’s the one that got this done.”
“And I can’t imagine that there’s another young lady your age that will have something like this on their wall because this is really history in the making,” Galef says. “You’ve done a great job.”
“And I was so drawn to Diana’s story because it shows how one person’s involvement can wind up starting a movement that’s going to save many lives for so many people in Dream’s position as well as others,” Galef says.
Lemon plans to lobby Washington lawmakers to implement similar legislation. Meantime, Galef says there could be more to the legislation in New York.
“Now the governor has asked Senator Carlucci and I to amend the bill to further extend the coverage,” Galef says.
She says such an amendment would expand Dream’s Law to ensure that appropriate patient care is part of any discharge plan from a hospital. Dream’s Law took effect immediately.
