Chris Rossi/The Gazette
Jerry Sachs, 76, of Chevy Chase first sought treatment at the National Institutes of Health in Bethesda about 25 years ago, when a dermatologist identified a spot of melanoma. Since, he has come back for two thyroid cancer surgeries and more than 20 biopsies to help doctors figure out why his he has such high prostate test results but no prostate cancer. NIH's Clinical Center relies heavily on Montgomery County residents like Sachs healthy and ill for its clinical trials.
Jerry Sachs was laid up in a hospital bed, his body laced with radioactive iodine.
He would be there for three days, his only human contact a hand leaving food at the door or reaching in with a radioactivity meter to test the room's levels.
“You take some reading materials, they have a TV set. They bring food to the door and tell you it's there, but even the hospital workers can't come in,” said Sachs, 76, of Chevy Chase. “It's a little weird.”
But he would do it again all in the name of science and medicine.
The thyroid cancer surgery, and tests using radioactive iodine that sticks to cancer masses doctors missed, was part of a natural history protocol by researchers at the National Institutes of Health in Bethesda. The treatment was comparable to that of a standard hospital, but unlike most patients who have cancerous cells removed from their thyroids, Sachs’ doctors took extra samples of his blood, urine and surgical tissue, and required his quarantine be completed on campus so they could do additional scans. It was the second clinical trial Sachs participated in at the National Institutes of Health Clinical Center.
NIH relies on people such as Sachs, who are willing to give researchers a shot at curing their ailments, as well as healthy people to volunteer for clinical trials to accomplish what the institutes do best provide cutting-edge disease research too risky and potentially unprofitable to interest private companies.
About 40 percent of the 80,000 patients who come to the Bethesda-based Clinical Center come from the Washington, D.C., metropolitan area, with a majority of those coming from Montgomery County. In 2010, 4,708 Montgomery County residents participated in trials; 3,020 have participated this year, Clinical Center spokeswoman Maggie McGuire said.
“We're very integrated with the community and the community is very integrated with us,” said Dr. John I. Gallin, who runs the clinical center.
NIH spends about $10 billion, a third of its budget, on clinical trials at universities and research facilities nationwide, Gallin said. About 10 percent of the trials NIH funds take place at the Clinical Center in Bethesda. The trials provide human research for disease treatment, drug development and medical understanding that might otherwise go unfunded; the federally funded NIH has liberty to pursue research that might or might not provide answers, solutions and profit, Gallin said.
This type of cutting-edge medicine has benefits for people living with an illness or condition doctors have been unable to figure out. The promise of world-class care is what attracted Sachs to NIH, he said.
“If, in fact, the tried and true didn't work, I felt NIH would be the place experimenting with something that would in fact be the answer,” he said.
Patients receive free treatment and often are reimbursed for travel, meals and other expenses.
Sachs, who lives in Chevy Chase, was not concerned about money; he was attracted by NIH's reputation. He first sought treatment at NIH about 25 years ago, when a dermatologist identified a spot of melanoma. Since then, he has come back for two thyroid cancer surgeries and more than 20 biopsies to help doctors figure out why he has such high prostate test results but no prostate cancer.
Since becoming a patient at NIH, Sachs has clocked even more time on campus as a volunteer. He serves on a patient board and recently helped in a nonmedical study. In it, Sachs and other clinical center veterans stood outside the center’s admission’s desk greeting newcomers, to find out what the center can do to be more welcoming and friendly to new patients who Sachs said are often intimidated by the size of the campus and nervous about the success they will have in their treatment.
But despite the promise clinical trials offer, they are essentially human experiments, and participation should not be taken lightly, Gallin said.
“People have to realize clinical research is risky business,” Gallin said. “When patients volunteer to participate, they may have a hope that something of value to them will come out but we don't know that it will.”
That decision especially is important for healthy volunteers, who do not have medical conditions compelling their involvement in experimental medicine.
Sharon Mowatt, 44, of Germantown has served as a healthy volunteer in at least 10 trials, including one that researched the relationship between weight and diabetes and another about high blood pressure in African-Americans.
Mowatt said she did not have reservations about enrolling in trials, but her friends and family did.
“They were scared, nervous. They thought I was crazy,” Mowatt said.
“How could I trust something like that?” Mowatt said her friends asked. “‘They don’t know what they're doing to you,’” her friends told her.
Healthy volunteers receive compensation for their services as much as $40 for an inpatient stay at the clinic, said Christine Grady, the clinical center's bioethics deputy chief. Investigators can assign inconvenience points, additional compensation, for extra activities such as an MRI, she said.
“It’s not huge amounts of money by any stretch of the imagination,” Grady said.
More often than monetary gain, volunteers join for altruistic reasons, Gallin said.
Mowatt, who works in information technology at NIH, said she wanted to participate in the trial because she knows from her experience at NIH that black Americans are difficult to recruit for trials, and that the outcome of the research could provide essential health knowledge for the black community.
Mowatt picked trials with minimal time commitments. As a result, she did not receive more than $25 for a trial, she said.
“I'm hoping that because I went to a study, someone else will be able to get medicine they need,” she said. “That's the hope.”
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