Proposed Del. bill aims to break barriers for would-be organ, bone marrow donors
DELAWARE – Nationally, about 100,000 people are waiting for an organ transplant. However, many would-be donors face financial barriers that come with preparing for and undergoing the procedure. That’s according to lawmakers and officials with the National Kidney Foundation (NKF).
Would-Be Donors Face Barriers
“Most of them – 98% of them – are waiting for a kidney. Last year, only 6,000 living donor organ transplants took place. So, you can see that we’ve got a lot of room to get to everybody who needs a kidney getting one,” said NKF Associate Executive Director for Maryland and Delaware, Nicole Scharf. “Kidney disease isn’t slowing down. Unfortunately, more and more people are being diagnosed every year, and the problem is continuing to grow.”
Some of those financial barriers can come in the form of travel and lodging expenses, and lost wages for organ and bone marrow donors. State Senator Kyle Evans Gay has introduced a bill that would offer a $10,000 tax credit for donors, to help offset some of those costs.
“There are costs of those days off. If those days off aren’t otherwise covered by an employer paid leave program, or some other mechanism, then those lost wages would be part of it,” said Sen. Gay. “There may be a sister-in-law traveling to provide an organ transplant to their brother-in-law in Massachusetts. There are expenses associated with that.”
Leveling The Playing Field
Scharf says the NKF is working to encourage employers to offer paid time off for living organ donors through their Living Donor Circle of Excellence Program. The program is also made possible by the American Society of Transplantation. Companies are required to provide a minimum of 80% of a given employee’s salary for at least four weeks of leave. Plus, companies can choose to implement annual caps per donor, and to ensure existing short-term and/or long-term leave provisions include donor recovery time.
“Basically, we’re encouraging companies, no matter the size, to be able to write it in their HR policy that they’re going to give paid leave and time off for someone who wants to donate an organ,” said Scharf. “There are incentives for companies that are willing to step forward, and be champions for living donors, and just better health in general for their employees.”
However, Scharf says for many Delawareans, those kinds of options are not available. “For people who might be self-employed, or don’t work for a company like that, how can you handle having six weeks off work with no pay? Or maybe your loved one that you want to donate to is in Philadelphia, and you incur travel costs, and hotels, and food,” she said.
For that reason, Sen. Gay says constituents urged her to try and shorten the list of those who need organ or bone marrow transplants with the incentives offered in the bill. “There are folks in our hospitals who are receiving care. Their standard of living is greatly diminished because they’re either spending a lot of time in hospitals receiving daily or weekly care, or they’re on these long lists,” she said. “They need an organ transplant in order to help their chronic illness or other concerns. So, is there a shortage? I think there are lists, and people are waiting every day to receive the gift of life.”
Supporting Lifesavers, Expanding Education
Now that the bill is making its way through the Delaware General Assembly, Sen. Gay says she hopes Delaware will soon join other states in providing financial support for those making a selfless decision. “What we want to do is just kind of provide financial supports for individuals who are incurring those costs, simply because they are doing something so noble,” she said.
And, Scharf says the passage of the bill could help more people to know about their potential to give life. Beyond that, Scharf says, getting more people off of life-saving measures, like dialysis for example, could benefit the national health care system, as well.
“It’s going to increase the number of people who can step up and be living donors, because it’s going to raise awareness and educate people that being a living donor is an option. There are so many people living across the country who don’t know that you can give a kidney,” she said. “It’s also going to chip away at the millions of dollars that we spend on Medicare for people that are on dialysis, because it’s going to get those people off of dialysis and get them a transplant.”
“To move forward, You have to give back”
Scharf, being a living kidney donor herself, has seen first-hand the kind of impact ending that wait can have not just on the recipient, but on the donor as well. She recounted the story of how she donated her kidney to 47 ABC.
When Scharf met her then 36-year-old kidney recipient, she saw a golden opportunity to improve someone else’s life. “It was heartbreaking to watch her life change in that way. I just wanted to do something to help. I was fairly healthy, and worked for the foundation for a long time. But, I had never really considered organ donation until I had a relationship with her,” said Scharf.
The recipient, Allie, was receiving dialysis three to four times a week, according to Scharf. After finding our that she was not a perfect match for Allie, Scharf got involved in a ten person swap, involving five donors and five recipients. “It ultimately didn’t save just her life; it saved the lives of others, because I wasn’t a direct match for her. I thought at that point, my journey was done. But, the surgeon said, ‘Wait, there’s more, and you can do this paired exchange program where you don’t have to give to her,'” said Scharf.
Through their journey together, Allie and Scharf formed an unbreakable bond. Scharf now proudly sports a tattoo reading, “To move forward, You have to give back” and the date of her surgery. Now, Scharf says Allie is living a happy and healthy life, and planning to get married in October. Scharf tells 47ABC she will be in Allie’s wedding.
“It’s so rewarding. It opens you up to a whole different world of people to be connected to. I’ve learned a lot going through the process. Just to know that you’ve had a difference in saving somebody’s life, or at least giving them a better quality of life, is amazing,” said Scharf. “If you’re healthy, and you’ve got two kidneys, you only need one. It’s just the right thing to do. There are so many people suffering that can benefit from your gift.”