By all accounts, the cancer care community had never been faced with a situation like the one brought on by Hurricane Katrina. The country's worst natural disaster sent thousands of evacuees out of a deluged city and a battered tristate coastline, displacing an untold number of peopleincluding an unknown number of cancer patients and their physicians.
After finding safetyor at least shelterconfusion took over as patients tried to reach doctors, doctors struggled to find their patients, and doctors attempted to contact each other. Patients requiring chemotherapy or radiation treatments, postsurgical patients awaiting follow-up treatment, and those participating in clinical trials were left without access to their primary care facilities. Researchers left their laboratories and research animals unattended.
Several days after Katrina hit the Gulf Coast on August 29, recognition of the extent of the problem for cancer care sent many federal agencies, cancer organizations, and public and private cancer groups into action in ways that were completely new for them.
Finding Patientsand Doctors
Early on, the American Society of Clinical Oncology (ASCO) estimated that at least 600 patients were on active therapy in the New Orleans area alone, but that figure was preliminary. According to an analysis by Jennifer Groves, a health research analyst at the University of North Carolina at Chapel Hill, 172 oncologists practice where hurricanes Katrina and Rita did the worst damage and a total of 1,398 were in affected areas.
Laura Lazarus, M.D., was one of the doctors looking for her patients. Lazarus, a breast surgeon on the staff of Louisiana State University Health Care Services, left Saturday, August 27, two days before Katrina hit New Orleans, for her parents' home in Ohio, with 3 days of clothes on hand. At the time, Hurricane Katrina was still in the middle of the Gulf, and because Lazarus wasn't deemed essential medical personnel, she thought it would be a good time to visit home. She didn't have any patients in the three hospitals at which she attendedthe two public institutions, Charity and University hospitals, and the private Memorial Medical Centerand she planned to be back in time to operate on three women that following Tuesday. However, she had at least 20 surgical patients "in process" who still had their drains in, and others for whom pathology results on their excised tumors were not yet available.
Two weeks later, Lazarus said that she had no idea when she could go back and what work she could do if she returned. By then, ASCO had established the Hurricane Katrina Message Board to help doctors and patients locate and communicate with other doctors. The message center was not confidentialgiven the nature of the emergency, ASCO decided to suspend compliance with federal privacy regulationsand it was cross-linked to other special Katrina sites, including those at the National Institutes of Health and at the American Cancer Society.
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Many organizations put up Web sites to link the displaced physicians as well as patients, or to provide emergency information. Among other services provided by the National Cancer Institute were a listing of NCI-designated cancer centers across the country that indicated their ability to provide care to displaced patients, a 24-hour medical consultation service, and its Live Help Line service that lets patients or doctors send instant messages to operators and get information in real time.
The American Society for Therapeutic Radiology and Oncology (ASTRO) compiled a list of radiation therapy facilities around the country willing to continue daily treatments for patients who were evacuated from the area. A consortium of providers from the Gulf Coast established a call center through the Western Michigan Cancer Center in Kalamazoo, to allow radiation oncologists to speak with displaced physicians to ensure that their patients received the right treatment. Many radiation oncologists throughout the country volunteered their time and facilities to provide patients with the treatments that they needed, said Laura Thevenot, ASTRO's chief executive officer.
Help came in other forms. Several pharmaceutical companies made their medications available to displaced cancer patients free of charge, and a week after ASCO launched a campaign to collect $1 million to support cancer patients affected by Katrina, Amgen Inc. donated $500,000.
And the American Cancer Society mobilized 150 of its staff in the Gulf Coast states to act as first responders of sorts. They went directly into shelters and posted flyers in grocery stores and hotels in areas where evacuees were staying, seeking cancer patients who needed help. "We were on the ground, connecting patients with doctors using the contacts we had, as well as the ASCO and NCI physician locator services," said Pat Dotson, vice president of Health Initiatives for the ACS's mid-south division in Jackson, Miss.
They also tried to track down medical records, and in the many cases where that was not possible, they probed patients about the medications they were taking. "So many people had no information about their care, so we became detectives, asking things like what color the pills they used were," Dotson said.
Houston Helps, Prepares for Hit
Physicians and nurses at the University of Texas M. D. Anderson Cancer Center in Houston were also on the hunt for any treatment information they could get on the 500-plus cancer patients who made their way to the Houston institution after evacuating from hurricane-hit areas. "It's been a puzzle trying to put together a detailed summary of the care these new patients need," said Eileen Briggs, clinical administrative director of the Nellie B. Connally Breast Center. "Some patients could not remember a single thing about their treatment due to the shock of the storm and its aftermath."
The staff used every resource they could think of to piece together a patient history, including calling commercial diagnostic testing companies and federal and private insurance programs, using the extensive connections physicians there had with other oncologists in the strike zone, and relying on the ASCO message board. "We were able to get back into the medical records, and there was only one physician I was not able to eventually find," Briggs said.
But within weeks, M. D. Anderson was preparing itself for Hurricane Rita. After the hurricane left the TexasLouisiana coastal area the weekend of September 24, the cancer center closed to outpatient care for 4 full days, said the institute's physician in chief, Thomas Burke, M.D. The cancer center never lost power, and 1,200 employees were on hand to care for 425 patients and their 350 family members. "We ran a little light on food because we hadn't anticipated families of patients would stay here," Burke said. "It was a short-term issue, because we have a robust emergency plan and we are not below sea level."
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Research Facilities Lost
Roy Weiner, M.D., director of Tulane Cancer Center, said he "never envisioned" that Tulane, the hospitals it serves, its research program, and even his own home could be devastated. "Part of me realized that we are below sea level, but it just was not at the top of my mind," he said. "Now I am living out a nightmare."
Tulane's Cancer Center had been treating about 25% of all cancer patients in New Orleans, but now its cancer outpatient facility is closed, one of the three hospitals it serves has been declared a total loss, and doors to the other two hospitals are shut.
The good news, according to Weiner, is that the cancer center has reestablished its clinical program at Lakeview Hospital in Covington, La., across Lake Pontchartrain from New Orleans. "We are down, but not totally out," he said, explaining with some irony that Tulane had planned to eventually extend its cancer care beyond New Orleansand now that has happened.
But the bad news is that the research laboratories that housed 29 NIH-funded faculty researchers lost power and shut down. (The university began having researchers return in phases to the facility in early November, hoping to complete the return by the beginning of the year.) And perhaps worst of all, Weiner said, is that Tulane's clinical trials program is in shambles. The waterlogged files that contained information on the 100 or so patients on active treatment trials have yet to be dried out and decontaminated, Weiner said.
"This is such a loss because the investment we have in a single research patient is absolutely enormous," Weiner said. "The money is one dimension, and time and effort lost is another. This will impact the future of medical research."
Helping evacuated patients who are enrolled in clinical trials became a priority for the NIH in the days after the storm. NCI offered resources and coordinated with ASCO, cancer centers, and community oncologists to help find and refer patients to Baton Rouge, San Antonio, Houston, Alabama, and Florida medical facilities so they could continue with their protocol treatments.
The long-term impact Katrina had on clinical trials is, as yet, unknown. "It is still early to tell which Southwest Oncology Group (SWOG) trials, if any, were substantially affected, since most of them are conducted across several regions of the United States and last for several years," said SWOG chairman Laurence H. Baker, D.O. "Fortunately, we have a number of SWOG institutions located in the Southeastern U.S. and in Texas, which were able to accept displaced patients and continue their treatment. We have seen a real commitment among our institutions, investigators, and patients to overcome difficulties and continue the trials."
Tulane's loss of research figured into the NIH's estimate that Katrina inflicted serious damage on about 300 federally funded projects in New Orleans alone, representing more than $10 million in research funds.
To help displaced scientists, especially those at Tulane and LSU, the American Association for Cancer Research (AACR) created a "Saving the Science" set of initiatives in mid-September. The program aims to help evacuated researchers find temporary research space at other institutions, and it provides funds for relocation as well as travel grants. The requests for help are just starting to come in and will likely steadily increase, said Victoria Wolodzko, assistant director of program administration. "People are still in shock given the devastation that has occurred," she said. AACR will continue raising funds for the program, which is expected to last for at least 18 months, she said.
Lessons Learned
Given his experience, Weiner said he will now press the medical community to think about how best to make medical records widely accessible. "The lesson to be learned as a nation is that the medical record, including participation in clinical trials, must be part of the patient, whether it is on a bracelet that patients can wear or is implanted," Weiner said. "And there needs to be a universal means of adding to the chip, to update the medical record, and reading from it."
Weiner said that the cancer center had electronic records but they were not available for use until mid-September.
Bailes, of ASCO, said that establishing a national standard for computerized medical records has been problematic and has forced a "cottage industry" approach in which institutions come up with their own strategies. But he agrees with Weiner that "Katrina, for all of us in medicine, will push the issue into focus."
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