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As I sit to write this, New Orleans is evacuated and still under water. Over the last 2 weeks, a hypnotic drumbeat of stories pulls me to the TV. In Dallas, driving home from the hospital 5 days after the hurricane, a string of buses longer than the eye could see was “parked” on the downtown freeway exchange, waiting to release the displaced souls to our convention-center-turned-relief-center. One million people have left the coast. At this writing, it is estimated that it will be months before they can return.
A few days after Hurricane Katrina hit, a young woman walked down the street from her home in Alexandria, Virginia, and knocked on the door of ASCO's headquarters. Her elderly father was a cancer patient who had been evacuated from New Orleans to Louisville, Kentucky, because of the hurricane. He needed care—and she needed help. Wendy Stokes, an ASCO staff member, took the young woman by the hand, made some calls, found a source of care for the woman's father, and connected the two. And while she was at it, she helped another friend of the young woman, a dislocated cancer patient looking for care in Mississippi. From dramatic rescues and heroic sacrifices that all of us have seen, to the small kindnesses that go unnoticed, thousands of Americans have stepped forward to do what they can to ease the suffering of neighbors. ASCO became part of this national response.
After the hurricane, the entire local health care system ceased to function. Among the displaced were the many patients who were receiving therapy for their cancer. Oncology patients bear a special burden. Many are receiving therapies that will save or extend their lives. The timeliness of therapy has been stressed to them. The need for close follow-up to monitor for toxicity has been underlined, yet in Katrina's aftermath, both patients and their oncologists were displaced. Phones were down. Although all patients benefit from the longitudinal care provided by their doctors, oncology patients are dependent on the availability of historical information. Documentation of their disease, stage, prior therapies, and timing of ongoing treatments are critical to the management of these patients; when their lives were uprooted, little to none of this information was available.
Several departments within ASCO geared up quickly to provide support. One of the immediate challenges was to provide a forum where patients and oncologists could hook up again. Oncologists seeing patients who sought their advice in “new” communities were faced with making clinical decisions with little or no data. Within days of the event, ASCO had put a number of tools in place to make sure displaced cancer patients continued to get the care they need:
All ASCO members should be proud of their organization's response to this disaster. Of particular note were the contributions of Deborah Kamin, PhD, and her staff in Cancer Policy and Clinical Affairs, Kristin Ludwig in Communications and Patient Information, and Bernie Khoo in Information Services.
We don't think of our Society as an emergency responder, but after the hurricane, it acted as one. The very best, noble, altruistic, kind heart of our profession and our Society's staff was expressed.
Many questions are raised with this event. We are obliged to learn from it, because this will occur again. Just like many other organizations, including our government and its agencies, we were not prepared for such a disaster. Although ASCO responded to the challenge, I do not think that ASCO has planned for this role.
What role should we play in such a disaster? How can we be more proactive so to prepare for the displacement of cancer providers and patients in future events? Could a template bulletin/message board/Web communication tool be developed and pre-positioned to be available if needed on our Web site? Could ASCO encourage its members to provide emergency contact numbers with its annual directory information? Could relationships with the NCI and government emergency health care agencies be developed so that oncology patients and professionals can be considered a priority within the cacophony of a disaster? As we develop oncology-specific electronic medical records, should the exportability of data be a key feature of these systems that allow easy transference of information?
And what of our displaced members? Beyond the personal support needed, what role and support can we provide to get their practices back up? Many academic centers absorbed fellows and students, but what can ASCO do as a body to assist the affected programs to become re-established? What of the need to help the centers and practices who absorbed patients in a rapid manner? Can ASCO help plan for a mechanism that would allow other oncologists to respond directly to help care for patients?
The questions keep coming. We must learn. We must prepare to be an effective part of the response to the future disruptions in health care that are associated with disasters. Though not explicitly stated to be an emergency organization, the role comes implicitly with our advocacy for cancer care.