Targeting shortage of transplant organs


For years, surgeon Rose-Marie Toussaint aggressively fought to keep her patients alive long enough for kidney and liver transplants.

But the slender, soft-spoken Toussaint would quickly learn a sad reality: Because of a shortage of donated organs, many died long before they became serious candidates for a transplant.

"Twelve patients die [nationwide] every day waiting for an organ," said Toussaint, who lives in North Laurel with her husband, Michael. "This is not acceptable. I want to do something to change this."

After years of pondering, she is ready to fulfill a longtime goal: developing a national transplant foundation to increase donations -- particularly among African-Americans -- and provide grass-roots community education, involvement and support for organ donations.

For the past few months, Toussaint has been traveling the country to gain support for her foundation, which is housed in her cluttered, book-filled home office. She plans to move into new office in downtown Washington this month and expects to have the foundation running in the next few months.

"Right now, African-Americans are donating about 11 to 12 percent [of organs], but 40 to 42 percent of the patients with end-stage kidney disease are African-American. That's a lot of us. We're not having a lot of African-American donors giving to match African-American recipients," said Toussaint, 42, who has served as an assistant professor at Howard University College of Medicine and associate director of the Howard University Hospital Transplant Center.

"I have gotten quite a positive response so far," Toussaint said about the foundation. "There is really a need for something like this, and people are excited."

Medical experts say they're impressed by her initiative.

"The need for organ donations is great, and every idea deserves play," said Dr. James F. Burdick, professor of surgery in the division of transplantation at John Hopkins Medical Institutions. Burdick has worked with Toussaint on transplant issues.

"She is a very smart and thoughtful surgeon, and she recognizes that we have to find ways to educate people and help them think differently about donating," he said.

Marion Borowiecki, chief executive officer of Transplant Resource Center of Maryland Inc., said he supports Toussaint's goal.

"I think what she is trying to do is fabulous," Borowiecki said. "She has been a successful surgeon and is known in the transplant community."

About 220,000 Americans are diagnosed with kidney and liver disease each year. In 1997, 3,134 people died waiting for kidney and liver transplants, according to the United Network for Organ Sharing.

Toussaint acknowledged that several transplant organizations operate across the country. The Minority Organ Tissue Transplant Education Program, based in Washington, has been trying to reach the minority community for years, according to its founder, Dr. Clive Callendar.

But Toussaint said more needs to be done to encourage donations and more attention should be focused on the minority community, which has historically been suspicious of donating because of illegal medical experiments conducted on blacks without their permission or knowledge.

Toussaint recalled the Tuskegee experiment, a government project from 1932 to 1972 that withheld treatment from 399 black men with syphilis to study how the disease spread within their bodies.

Raising awareness

"People are afraid and they are not aware of the success of transplantation," Toussaint said, noting that the incidence of end-stage kidney disease is high in the African-American community and is usually caused by hypertension. "You need people in the community talking to the community and raising the level of awareness."

She said potential organ donors would be required to provide a thorough medical history and results of a physical exam to determine whether they would be viable candidates. Those qualified would be given a donor card. Surgeons affiliated with the foundation would educate prospective donors and their families about the process.

Toussaint is raising money across the country to support the foundation, which also would help subsidize transplants for those who lack medical insurance or money.

The foundation is the latest achievement in a long journey, from Toussaint's childhood in the Haitian capital of Port-au-Prince to recognition as one of a handful of women in the United States specializing in liver and kidney transplants. She tells her story in a recently published autobiography, "Never Question the Miracle: A Surgeon's Story."

Her interest in medicine began at age 7, when a voodoo priest read her palm.

"I assumed that I was going to be a nun in the Catholic church because my grandfather and two of my aunts attended a Catholic church," she said, smiling at the idea of being an ordained church worker. "They thought that I was going to be the first nun in the family, but the priest read my palm and said, 'Oh, no, not in this lifetime. You're going to be a surgeon.' I looked in his eyes, and I realized that he knew what he was talking about."

Toussaint arrived in Miami with her family in 1963, unable to speak English. But she found her love -- science.

"Science is a universal language. You really don't need to know English very well to understand concepts in science."

The only black girl in her high school class, she says her white guidance counselor scoffed at her interest in college, saying, "You can't do this. You're a black woman, a foreigner -- you have no money.' "

She left that meeting feeling crushed but determined. With help from that counselor, she entered Loyola University in New Orleans. She received a degree in biology -- but was rejected from every medical school to which she applied.

"That was a real depressing time in my life," she said. "But I knew that I still wanted to be a physician. I felt that the door wasn't locked forever and nobody had thrown away the key."

Then Howard University's Medical School called, and Toussaint headed to Washington.

After receiving her medical degree, Toussaint was a general surgeon for five years and then a liver transplant surgeon at the University of Pittsburgh. She returned to Howard University in 1991, where she became director of liver transplant services, and began teaching. In 1997 she went into private practice and decided to write the autobiography.

"Writing this book was a psychological experience for me," Toussaint said. "The idea of transplantation is very difficult, especially when you have to face one of your own patients dying while waiting on an organ."

But she delights in the company of her patients who survive and remains good friends with them.

"This woman saved my life," said Gloria Brooks, who was at Toussaint's house recently to help her prepare for a book tour. Brooks, 42, received a liver transplant in 1992.

"My energy level was so low," she recalled.

She developed hepatitis A and four weeks later was in a coma. With Toussaint performing the surgery, Brooks received a liver from an older man who died of a brain aneurysm. "Both God and her working together did the trick," Brooks said.

Work has just begun

Toussaint says her life's work has just begun. She's confident her foundation will increase organ donations. She also wants to be a role model for youths considering careers in surgery.

"When people ask me how did I get here, I know they are really asking, 'How did you, a woman, a black woman from Haiti, the poorest country in the Western Hemisphere, get here?' "

She marvels at the question.

"It took a lot of hard work."

For information about the National Transplant Foundation, write to Dr. Rose-Marie Toussaint, P.O. Box 334, Burtonsville 20866 or call 301-498-1353.

Pub Date: 1/02/99

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