A focused push to educate people about human tissue donation and garner greater contributions of donor tissue has become the most recent initiative of the National Disease Research Interchange.
The Philadelphia-based, nonprofit NDRI — through its National Resource Center — works to advance the procurement, preservation and distribution of human cells, tissues and organs for research and transplant.
"There is simply a lack of tissues for scientists, who are doing very important work in many areas of reassert," said Lee Ducat, founder of the group, which recently held its annual trustee's dinner at the Rittenhouse Hotel in Center City. "We want to educate people about tissue donation, and destroy the myth that tissue can be taken only from someone who is dead.
"That isn't true since human tissue — whether healthy or diseased— can be obtained from patients during surgery and after childbirth, for example," she said.
When the tissues aren't harvested for scientific research, most either wind up being trashed or incinerated, explained Ducat: "We're taking what are very often waste products and turning them into a national resource.
"These tissues are needed urgently by researchers, who are developing therapies and cures for today's most prevalent and deadly diseases, such as cancer, heart disease, diabetes, glaucoma, Parkinson's and HIV/AIDS, as well as the gamut of rare diseases."
The tissue initiative was launched, she said, because it had never been done before with such intensity and in the face of such urgency. It will continue, as a primary focus, through this July and resume with another major push in the fall.
As part of its promotional efforts, said Ducat, NDRI plans to send informational ads to "every TV station in the country." After that, NDRI's ongoing quest to procure tissues, cells and organ will continue as usual.
As founder of the NDRI in 1980, Ducat was recruited by her friend, Paul E. Lacy, M.D., Ph.D., a physician and scientist known as the "Father of Islet Transplant" for his pioneering work in this area. Lacy alerted Ducat about the dire need for human pancreas tissue for islet cell research, and told her that she was the one who could lead the charge — based on her leadership role in founding the Juvenile Diabetes Research Foundation in 1970.
Getting Out Front First
Ducat served as JDRF's first president, established its international organization, and with the advocacy of then Sen. Richard S. Schweiker of Pennsylvania, spearheaded the creation of the Diabetes Commission, the national Diabetes Advisory Board, and a research program that spans the National Institutes of Health.
In response to Lacy's challenge — and with starter funds from the Pew Charitable Trust — Ducat got the NDRI ball rolling and, with help from inside and outside the Jewish community has kept it rolling, so that today NDRI is a clearinghouse for the very specific needs of research science.
"We began back then to get human tissues to scientists. Today, we serve 100 diseases and 500 scientists annually, with 20,000 tissues brought through the program every year," she acknowledged. "We set up the network to bring human tissues to the lab. Before that, medical researchers had to rely on biopsies and human blood samples for their work."
In the past 20 years, NDRI has served about 5,000 scientists with more than 200,000 human biomaterials, leading to more than 2,500 papers published in scholarly journals on diseases from diabetes to cancer to HIV and rare diseases.
NDRI collects tissues every day across the country — one of the few national organizations that takes time to do this — Ducat said, and works with local hospitals and hospitals all over the nation. She added that in connection with the tissue initiative, she doesn't expect opposition from conservative groups, and that while the initiative is costly, "it isn't a fundraising effort at all."
Ducat referenced that very famous of Kevin Costner's films, "Field of Dreams," incorporating the line: "We took a 'if you build it, they will come' sort of stance."
'Growing in Its Ability'
Louis Philipson, M.D., Ph.D., department of medicine-section of endocrinology, diabetes and metabolism director at the Kovler Comprehensive Diabetes Center of the University of Chicago — and also the recipient of the Outstanding Science Award at the organization's event — spoke about NDRI and the tissue initiative: "In my case, this means human pancreatic islets that can be very hard to come by, and skin cells from patients with certain kinds of diabetes that can be an important source of genetic material.
"NDRI is growing in its ability to obtain and provide not only these tissues, but other very scarce and difficult-to-obtain material for my colleagues as well."
Nearly all types of tissues can be "banked" and are useful, stressed Philipson.
The public needs to be educated that human tissues and organs collected both at autopsy and during operations can be critically useful to better understand human disease.
"Studies of cells in culture or experimental animals can only go so far," he said.
According to NDRI board chairman Hal E. Broxmeyer, Ph.D. and scientific director of the Walter Oncology Center of the Indiana University School of Medicine in Indianapolis: "I have reviewed dozens of proposals that come in to NDRI from researchers, whose projects depend on working with human tissue.
"Our pool of researchers requesting material grows by 20 percent a year, while more than 80 percent of our researchers need more human tissue than they can obtain."
For more information about NDRI and its tissue donation program, call 1-877-221-NDRI.