Pulling up to the entrance of the NIH Clinical Center, my husband, Jack Nelson, and I were surprised to find valet parking—with a sign that read no tipping, please. It was just one of the perks designed to make NIH patients feel more like visiting dignitaries than sick people.
We knew that Jack was lucky to have been accepted for treatment—in his case, six weeks of radiation and chemotherapy for pancreatic cancer. But we had no idea the care would be so all-encompassing, so personalized, or that everything from radiation to marijuana pills would be free.
“Let’s say it was almost, but not quite, a pleasure to go there every day to get zapped,” Jack says.
Like many Washingtonians, we were aware that the National Institutes of Health in Bethesda is at the forefront of medical research. But neither of us had heard of the Clinical Center, a 234-bed research hospital offering the ultimate in medical treatment. Nor would we have guessed that it needs more patients.
“It always amazes and disappoints me how few people in the country really know about the Clinical Center, which is one of the great gifts Congress has given to its constituents,” says Dr. John Gallin, director of the center.
Jack probably wouldn’t have ended up at NIH except for a physician friend. At 79, my husband, a retired journalist, was a healthy man who played tennis, worked out at the gym, and took the dog for long walks. But over the course of several months last fall, he began experiencing stomach pain coupled with extreme fatigue. A gastroenterologist was the first to say the terrifying words “pancreatic cancer.” But he said he couldn’t be sure and ordered more tests.
Before that could happen, a friend—vascular surgeon Hugh Trout—advised us to go to Johns Hopkins Hospital, a leader in the treatment of pancreatic cancer.
A CT scan there confirmed the diagnosis. Jack’s tumor was still confined to his pancreas, meaning it hadn’t spread, but doctors concluded that it was too close to a blood vessel to operate on. (In retrospect, I’m grateful we learned the truth in stages—it helped cushion the blow when it came.) Hopkins oncologist Daniel Laheru advised a six-week course of radiation bolstered by chemotherapy, which Jack would take daily in pill form. The hope was to shrink the tumor enough to be able to be able to remove it surgically—the only known cure for pancreatic cancer.
Jack was glum about going back and forth to Baltimore for radiation five days a week, and once again Hugh Trout stepped in. “If you can get into NIH, they have the absolute best and latest imaging and radiation machines,” he told us. After making a few inquiries, he put us in touch with NIH radiation oncologist Deborah Citrin, who also had been recommended by the doctors at Hopkins.
Over the telephone, Dr. Citrin learned that Jack previously had had radiation for prostate cancer, which disqualified him from the trials she was conducting. “It’s very important that the patient doesn’t have anything in his medical history that would confound the results of a trial,” she explained. But she offered to phone around to see if she could find another study he qualified for.
Dr. Citrin called back to say Jack met the criteria for an investigational protocol for patients with certain types of cancer that are treated with radiation, including pancreatic cancer. The investigator was studying their blood and urine for clues that might help predict, for example, who might need more aggressive treatment or whose cancer might recur sooner. Jack would be getting the so-called standard of care—that is, the same treatment offered by regular hospitals. All the protocol required him to do was to have his blood and urine tested at regular intervals.
No doubt it didn’t hurt to have our doctor friend’s intervention, but we learned that it’s not necessary to be referred by a physician to take part in trials at the NIH Clinical Center. To find a trial that’s accepting patients, anyone can go to clinicaltrials.gov, type in symptoms or a diagnosis, and find out if relevant studies are going on anywhere in the world, including at NIH. The site also informs prospective patients how to get in touch with the right people to begin the screening process.
“For years, the best we had was a book we put out each year describing all our studies, which we mailed to every physician in the country,” says director John Gallin. “Some people, I’m sure, looked at it and threw it in the garbage. But the Internet has been transformative. We now get about 30 percent of our patient contacts through the Web.”
Of the thousands of studies conducted or funded by NIH, roughly 1,500 take place at the Clinical Center. Most of the rest are carried out under NIH guidelines at premier research centers such as Hopkins, Harvard, and UCLA, where the care likely will be excellent but only a limited amount is free.
The studies on the Bethesda campus run the gamut. Many are so-called natural-history studies in which diseases such as Parkinson’s, lupus, and breast cancer are followed over months and years. Often they involve the families of patients in addition to the patients themselves, and participants may or may not receive treatment, depending on the protocol. For many volunteers, the payoff is mainly the chance to advance science as well as receive advice on managing the disease.