The Very Best Care

It’s available right in our back yard at NIH’s research hospital—and it’s free

By: Barbara Matusow

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.

Clinical trials—the kind Jack took part in—usually involve medical intervention. Close to 700 trials are going on at the Clinical Center targeting a variety of disorders. Investigators might be testing a new drug to slow the progress of Parkinson’s, evaluating risk factors in childhood obesity, or developing the next generation of MRI machines. The Clinical Center also sees lots of patients with rare diseases because few drug companies see much profit in developing treatments for such small populations.

“People will ask me what’s available for, say, a particular mental disorder,” says Clare Hastings, chief of nursing at the Clinical Center. “I never say, ‘Nothing,’ because you don’t know what someone at the National Institute of Mental Health might be studying. I tell people how to go on the Web site.”

Radiation of the pancreas is tricky, in part because the gland is so close to the stomach. The first day of treatment proved too much for Jack. He began throwing up before we left the Clinical Center. On the way home, I had to stop the car a dozen times so he could get out.

“It was pretty horrible,” he recalls. “I’d had radiation for my prostate cancer 13 years ago, but I never experienced any nausea.”

When we got to the radiation clinic the next morning, Linda Sciuto, the nurse assigned to Jack, gave him Zofran, an antinausea drug. It worked, up to a point. He began taking it three times a day and never threw up again, but he felt queasy much of the time. The other drugs he tried didn’t help, which puzzled Sciuto and Dr. Citrin. After a couple of weeks, they decided to call in the palliative-care unit.

We had already met with Sara Bergerson, a nutrition-support specialist, who was a great source of advice, recipes, and nutritional-supplement packets. She introduced herself by saying, “I’m here to pamper you.”

Then Karen Baker, a nurse practitioner from the Pain and Palliative Care Service, joined Jack’s team of caregivers. She explained that the service employed specialists to deal with the medical, psychological, social, and spiritual dimensions of suffering, and she probed gently to find out how Jack was coping.

Besides the nausea, he told her, he was suffering from insomnia, loss of appetite, and—something he had never experienced before—anxiety. Karen explained that the palliative-care team could probably help. Along with conventional approaches such as counseling, spiritual guidance, and drugs, the unit offers alternative approaches, including acupuncture, massage, biofeedback, pet therapy, recreation therapy, reiki, and hypnosis.

“Many institutions have palliative-care services, but they are only available for end-of-life care, which Medicare will pay for,” says Ann Berger, chief of the Clinical Center’s Pain and Palliative Care Service. “Here we see patients months to years before death. We also provide many complementary services that other institutions don’t offer because insurance won’t pay for them.”

Jack, the antithesis of New Age Man, surprised me by showing an interest in biofeedback; he learned deep-breathing and visualization techniques that he found calming. I was invited to sit in on these sessions because, as Karen Baker explained, “we have to take care of the whole family, not just the patient, because the caregiver is under a stress burden, too.”

Jack also had counseling, massage, and acupuncture. As an unanticipated benefit, a tremor he’d developed several months before his diagnosis disappeared after two sessions with Dr. Gang Peng, the acupuncturist. But the nausea persisted. The wristbands and scopolamine patch Karen Baker gave him didn’t help, so she suggested Marinol, marijuana in pill form, although it doesn’t make you high. “It should increase your appetite and decrease your nausea and anxiety,” she told Jack.

It helped. Jack began eating and sleeping better, and his nausea eased. “Marinol is a medicine, and it works,” says Dr. Citrin. “We don’t prescribe it for everyone, but we had tried everything we could think of with Jack. Oftentimes, I think the Pain and Palliative Care people are much better versed in the management of these sorts of symptoms, and they get to the right answer much faster. They are an incredible resource.”

One morning toward the end of his treatments, Jack woke up and discovered his urine was dark red. At the clinic, Linda Sciuto sent him to a staff urologist, who took a sample. It turned out he had an infection, which was treated with antibiotics. The urologist scheduled an appointment for Jack in four weeks, even though his radiation treatments would be over by then.

The same kind of support—and more—is available to inpatients. “If there’s a Four Seasons of hospitals, that’s it,” says Lou Statzer, a retired DC businessman who spent the better part of six months in the Clinical Center for treatment of lymphoma. “You push a button and someone is there.”

The Clinical Center is the third-largest federal building in Washington, surpassed only by the Pentagon and the Ronald Reagan Building. Statzer stayed in the newer part of the complex, the Mark O. Hatfield Clinical Research Center, which opened in 2005 after extensive design input from patients. As a result, the building has such amenities as low windows so patients can see out, Internet access at every bedside, a library, an exercise room, a nondenominational chapel, even an ablution room for Muslims to wash before praying.

The Clinical Center also operates a school to serve the 28-bed children’s unit; it sometimes even pays travel expenses for patients and puts up families from out of town. And there’s no struggling with copays or battling your health insurer.

Says Susan Butler of Alexandria: “When they showed me the protocol they were going to use to treat my ovarian cancer, I asked them, ‘How do we pay for this and coordinate this with our health insurance?’ They said, ‘You don’t. It’s all paid for by your tax dollars.’ I was stunned.” 

Everything about the Clinical Center is big, including its budget, which was $362 million this year. This means the Clinical Center can afford resources not found elsewhere. It boasts 27 MRI machines; a typical hospital might have three. And doctors are far less circumscribed when it comes to using them.

“Typically, on the outside, the protocol for someone on chemotherapy would call for a set of follow-up scans in three to six months,” says Dr. David Bluemke, the Clinical Center’s director of radiology and imaging sciences. “But patients here are often scanned much more frequently than that. We sometimes know within days if a tumor has responded or not, so we may decide it’s not worthwhile to continue or it may be time to consider something else. You don’t have the insurance companies telling you how many CT scans you can do or dictating when they are to be done.”

Also setting the Clinical Center apart from other medical facilities is the ratio of staff to patients. There are some 1,200 credentialed physicians and more than 600 nurses—an extraordinary proportion, even when taking into account the 100,000 outpatients and volunteers seen there each year. But as nursing chief Clare Hastings points out, the needs of regular hospitals and research hospitals differ.

“Say you’re working with someone who’s getting a new experimental drug that hasn’t been given to humans before, and maybe you’re drawing blood every ten minutes to see how it acts on the body,” she says. “If you’re late with the blood draw, the data are no good. So we have to make sure we have the staffing available so the nurses can do exactly—not approximately—what they have to do.”

Given the nature of Jack’s trial, he had nothing to lose and everything to gain by taking part in it. That’s not the case for every patient. Not only was Lou Statzer’s treatment hard on him; there was a chance, though small, that it could kill him.

Like many patients at NIH, Statzer, 66, suffered from a hard-to-diagnose disease that had stumped a succession of doctors. Three years ago, he was so weak he could hardly walk from his house to the corner and his lymph glands were swollen. The first doctor he saw said it was probably an infection. Two more ordered his lymph glands biopsied, but they couldn’t pin down the problem.

A doctor friend advised Statzer to send his slides to NIH’s Dr. Elaine Jaffe, a renowned diagnostician of lymphomas, who identified the cause: Statzer had angioimmunoblastic T-cell lymphoma, a relatively rare form of lymphoma. He was advised to contact Dr. Wyndham Wilson, another leading lymphoma researcher at NIH, to see if he qualified for one of his trials.

Wilson and his colleagues didn’t sugar-coat the situation: The long-term survival rate for Statzer’s type of lymphoma was about 25 percent. Average life expectancy was 2½ to three years. Statzer’s cancer, which had spread to his blood, lymph nodes, and bones, was already quite advanced, which meant he would probably die sooner. His best hope appeared to be the experimental trial Wilson was conducting, testing the addition of a new drug to a cocktail already in use. But Statzer had to be screened to make sure he fit the protocol.

“I was scared to death,” he recalls. “But I had to wait to see if I had the protein they were studying. After about three days, I got a call. ‘You’ve got the protein. You’re in,’ they said. I started to cry, I was so happy.”

The treatment made him wonder how lucky he was: “They did everything they possibly could without killing me in order to kill the cancer cells. It was six months of pure agony—diarrhea, vomiting, extreme fatigue, no appetite, and I had this terrible itching all over. Believe me, the thought went through my head to back out. I thought, ‘I can’t take this anymore.’ ”

But Statzer stuck it out, and now, 2½ years later, he says his health is good and getting better. He was well enough a year ago to undergo open-heart surgery for a damaged mitral valve. “Heart surgery is like going to the dentist compared to my treatment for lymphoma,” he says.

Statzer was left with a side effect of his treatment that could prove permanent: numbness of his feet, or neuropathy, which he was warned about. Dr. Wilson says it was caused by one of the older drugs in the “cocktail,” and it may or may not go away. “We allow there to be some nerve damage because we believe it may be such an important drug,” he says.

Risk/benefit equations such as these exist in each trial. Before a study can go forward, it has to be approved by an Institutional Review Board, or IRB, which includes not only doctors, nurses, and scientists but also laypeople from the community such as teachers, lawyers, and clergy.

“They’re the jury,” says Dr. Gallin. “They have to be convinced that, first of all, the proposed study is good science. The second thing concerns the risk/benefit ratio. The study has to have a relatively small risk for a large benefit.”

Placebos, for example, are administered only if the risk is slight, according to Christine Grady, who heads the Clinical Center’s Department of Bioethics. 

“Suppose, for example, you’re testing a new blood-pressure medication,” she says. “For a short time, somebody on a placebo might have a higher blood pressure than you’d want them to have, but that could be easily reversed after their blood pressure is taken. In contrast, you almost never see a placebo-control trial for cancer, because people with such a serious disease need to get treatment. The risks of receiving nothing are just too great.”

Since the Clinical Center opened its doors in 1953, it has been responsible for many important medical advances, usually in partnership with other institutes in the NIH family. On a long list of firsts are chemotherapy cures for cancer, including childhood leukemia and Hodgkin’s disease; treatment of AIDS with the drug AZT; the use of lithium to treat bipolar disorders; tests to detect hepatitis and HIV in the blood supply; the use of fluoride to prevent cavities; and human mitral-valve replacement.

Most of these advances required the participation of people willing to undergo long hospital stays, invasive tests, and considerable inconvenience. For many patients, it’s the only hope—but even so, it’s not easy to find enough volunteers.

Often, officials say, the problem is doctors—many either don’t know about the Clinical Center or are reluctant to refer patients for fear of losing income. The possibility of getting a placebo is a turnoff for many people as well. And getting the word out is a major challenge.

“As part of the federal government, we are not allowed to advertise—we can only educate,” says Dr. Gallin. “We certainly announce trials on the radio, in newspapers, on the Web, and we write papers describing what we do in the professional literature. But we’ve never aggressively gone out and said, ‘Come to the Clinical Center, America’s hospital, and get the finest care in the setting of the finest clinical research.’ ”

January 20, 2009, was Graduation Day—the end of treatment at the Clinical Center. Jack was facing a new round of chemotherapy and hoping it could be administered there, but he didn’t fit any of the protocols. Linda Sciuto, his nurse, hugged us both and loaded Jack up with medicine. Dr. Citrin urged us to keep her informed about his progress.

We were all a little sad. “I was tremendously relieved to have the radiation behind me,” Jack said, “but leaving the Clinical Center felt like being torn from the arms of the Great Mother.”

While six weeks of radiation and chemotherapy had taken their toll, the result seemed dramatic as shown by his cancer marker—a measure, though somewhat inexact, of cancer activity in the blood, urine, and tissues. When Jack was first diagnosed in November, his number stood at 225. Three weeks after finishing radiation, it had dropped to 42, and it continued to go down in the succeeding weeks. Any score below 35 is generally considered normal, so it was clear that he had responded well.

One question we had: Did Jack get any treatment at the Clinical Center, aside from palliative care, that he wouldn’t have been able to get at a regular hospital?

“Not really,” says Dr. Citrin. “There are many facilities in our area with the personnel and equipment to deliver excellent cancer care. I think what you saw here was that the one-on-one care is excellent. We’re not financially motivated, so we can spend more time with our patients.”

Back in the real world, we felt fortunate to find George Sotos, a Montgomery County oncologist who administered the next round of chemo and who never seemed too busy to answer our questions. This treatment was no fun, either; it caused Jack’s blood counts to plunge dangerously and left him very tired. Still, at the end of three months, things seemed to be looking up: A CT scan showed that his tumor was at least 20 percent smaller. Even so, the surgeon at Hopkins, Dr. Christopher Wolfgang, said it was still too close to a major blood vessel to operate.

With his doctors’ consent, Jack decided to take a few months off from chemo, a break that has been a blessing. He has kept his weight up and is feeling pretty good despite occasional nausea and fatigue. We got a new puppy a couple of months ago—an exuberant sheltie named Leo—and although it may be a coincidence, Jack’s anxiety disappeared about the same time. We’ve taken some short trips and had lots of company—all in all, life seems pretty normal.

“I’ve decided to take it one day at a time and get as much out of life as I can,” Jack says. “The way I look at it now, it’s the quality of life that really counts, not the quantity.”