When Shani Kamberi went to get her driver’s license in September 2014, she didn’t understand when the MVA employee asked if she wanted to be an organ donor. Her father ended up answering no for her.
Four and a half years later, she has authored a bill that would require every county in Maryland to provide education on organ and tissue donation to high school students.
"Nobody should be put in a decision like I was [at the MVA]," the sophomore chemistry major told the Maryland House of Delegates Ways and Means committee on Thursday. "Where they don't have the knowledge to answer the question of whether they should be an organ donor. There should be more conversations between students and their parents but the education on this topic is missing."
With the help of the Living Legacy Foundation, an organ procurement organization based in Baltimore, Kamberi crafted a bill that would require each board of education in Maryland to provide instruction on tissue and organ donation to high school students.
"In 10th grade when you take health, the mandatory course to graduate, you would also learn about organ donation," Kamberi said.
Public schools in Maryland are not mandated to provide organ donation education in schools, said Karen Kennedy, the foundation's organizational trainer and special projects coordinator.
Kamberi said she was inspired to start researching organ transplantation and donation by her high school English teacher, Jonathan Bos, who had received a heart transplant 19 years ago.
"I have always made a point of telling my students my 'heart story,'" Bos told the committee.
"I couldn't believe that my own teacher was standing there, talking to all of us about a heart that was not initially his," Kamberi said. "The moment was surreal and his experience resonated with me. Thanks to Mr. Bos I was compelled to learn more."
Kamberi went from researching organ donation in a independent studies class two years ago as a high school senior, to authoring a bill with 11 cosponsors. Cosponsors include Del. Eric Luedtke (D-Montgomery) and Del. Jheanelle Wilkins (D-Montgomery).
"When she said, 'I wrote a bill,' it's not that I didn't believe it," Bos said. "My immediate reaction was, 'Kids in college don't write bills. The people in the legislature write the bills.' I thought maybe she inspired someone. But it turns out she wrote the bill."
Del. Pamela Queen, the bill's lead sponsor, supported it in part because of the disparity between registered donors compared to those in need of a transplant among black people. "I was particularly interested in this issue because we find that minorities are least likely to be organ donors," Queen said.
Black people donated about one quarter of the 366 organs donated in Maryland in 2017, while almost half of the nearly 4,000 people currently on Maryland's organ transplant waiting list are black as of February 2018, according to the U.S. Department of Health and Human Services.
"I know first hand that providing high schools with this opportunity to understand this public health crisis that we face is incredibly important," Dr. Dr. Macey Henderson, a Johns Hopkins School of Medicine assistant professor of surgery in the Division of Transplantation, told the committee, told the committee. Henderson became an organ donor in 2009. "Sometimes these people die while they're waiting if they're not lucky enough to get a transplant."
Twenty people die each day waiting for a transplant and a new person is added to the transplant list every 10 minutes, according to the Department of Health and Human Services.
The organ donation education curriculum would be provided to schools by the Living Legacy Foundation, Kennedy said.
"We recognize that there is a very important group who deserves the benefit of that education and that is our young adults who deserve to have the information that will help them make the best decision that they can," Kennedy said, and added they already have a "robust curriculum" in place.
The bill will also help eliminate the numerous myths that come with organ donation, Kamberi said.
"In my professional work, I've found that education is critically important," said Dr. Tanjala Purnell, an assistant professor at Johns Hopkins School of Medicine Division of Transplantation who testified at the committee hearing. "In particular, to dispel some of the misconceptions about donation."
Some common misconceptions include that doctors won't try to save a person who is an organ donor, that many religious groups do not support organ donation and that the donor list is biased toward individuals with more wealth or status, according to a list compiled by the National Foundation for Transplants.
"I must admit I too have been wary about certain types of interactions with the medical community based on biases that I encountered when I was young," Queen said. "I know that I would have benefited from a program that would have introduced me to this safety and awareness when I was in high school."
Kamberi's bill must pass out of committee before it is voted on in both chambers of the General Assembly, but she is optimistic. "I hope that people can understand the need to have education on organ donation, and I hope this gets passed," she said.
As the legislative process plays out, the sophomore will return to being a normal college student.
“I’m kind of senile,” Kamberi joked. “When I leave [the hearing] I’m going to go do my lab report.”