"Not having a portable medical record has been a massive challenge," says Mark Clanton, a deputy director of the National Cancer Institute, of the tens of thousands of patients dispersed around the country and needing access to doctors and drugs. "We need to create plans to evacuate and provide better care for the immediate medical needs of all people with chronic illness, not just cancer."
The NCI has set up a special Katrina-related page on its website, with information on how to find new doctors and continue receiving drugs and therapy. So far, it's received about 5,000 page views, with another 500 on a Spanish-language site. But there is no doubt that many cancer patients displaced by Katrinathe region has 7,600 participants in experimental trials, with many thousands more receiving conventional carehave had delays or disruptions to treatment, in some cases with devastating consequences.
Scott Cheek, a radiation oncologist in Dallas, Texas, said that about a week after the storm he saw a retiree from New Orleans who said he had lung cancer. The patient, in his late 60s, had no idea what kind of cancer he had or what stage it had developed to. He had no x-rays, no pathology reports, no access to his doctor, and had spent more than a week getting his family situated in Dallas before contacting Baylor Sammons Cancer Center, missing an estimated 10 radiation treatments.
"It looks like he has a new lesion in his lung," says Cheek. "We can't be sure, but I think it's probably a pretty reasonable possibility that it wouldn't have [spread] if he could have stayed in New Orleans and continued treatment." Although it's likely that the lung cancer was going to kill his patient, Cheek says the man was "probably going to have a little bit longer and better quality of life" if he had received continuous radiotherapy.
Delays in treatment are also dangerous for people with infectious diseases. An estimated 8,000 people with HIV and AIDS have been displaced by Katrina, and missing medication may lead to them developing resistance to the drugs treating the disease. Tuberculosis patients, many of whom are notoriously non-compliant in taking their six-month-long treatment regimen, may be relapsing and infecting others in crowded shelters. Before the hurricane, public health workers would visit the homes of many of New Orleans' 50-odd TB patients, and stand over them as they took their medication. Raoult Ratard, with the Louisiana office of public health, says "one of the goals we would like to achieve within the next 30 days is to try to find out where they went."
In contrast, doctors at MD Anderson say Melinda Amedee was a model patient. They were able to repeat tests and gather enough information to perform surgery on Tuesday. "It would have been a nightmare if she hadn't known what medications she was on," says Christopher Wood, associate professor of urology and cancer biology at MD Anderson. "Unfortunately it's not uncommon to have patients say they take a little blue one, a green one, a big brown one, and you have absolutely no idea what they're talking about."
Many families were separated by Katrina, so even if parents know all about their children's conditions, they sometimes weren't around to pass that information on. Paul Sirbaugh, director of emergency services at Texas Children's Hospital, says his staff was confronted by children with liver transplants, cystic fibrosis, chronic asthma and seizures and no idea of what medication they were on. "If we don't know what medicines they're on, we don't know what levels to measure to monitor their condition," Sirbaugh says. "A lot of times we have to start over."
Healthcare workers treating hurricane evacuees are finding themselves in the unusual position of wishing that patients had a little less faith in their doctors. "It does amaze me that in this day and age, people don't know what drugs they're on, what their treatment plan is," says Roy Herbst, a professor of medicine at MD Anderson. "That's probably because they trust their physician."
The lesson to be learned from New Orleans, where many physicians' records have been washed away forever, is that patients are well-advised to take on basic record-keeping themselves, health officials say. A waterproof, wallet-sized list of medications and important health information should be carried at all times.
But perhaps a bigger lesson learned is the need for a national databse of electronic medical records. "We're all aware of the issues of protection of privacy, and that's an absolute requirement," says John Gallin, director of the National Institutes of Health Clinical Center. "But I consider this one of the top priorities for the health care delivery system in this country." Throughout the chaos of Katrina, doctors treating displaced patients in the Veterans Affairs system have had access to information that those outside the VA are dreaming of: up to 20 years of lab results and six years worth of x-rays, scans, doctors' notes and medication records, available for all 5.2 million active patients.
"The electronic health record is available 100 percent of the time for 100 per cent of the VA patients," says Jonathan Perlin, the VA's undersecretary for health. "Once you see it, you would wonder why people use horse and buggy tools in the information age."
Every day, 931,000 doctors' orders, 567,000 doctors' notes and almost 500,000 diagnostic images are uploaded to the system, which Perlin says costs $78 per patient, per year, to run. "We asked the question early on, not could we afford to do this, but could we afford not to do this," he says.Hurricane Katrina has given him the answer.