• 9/18/2006
  • Washington, D.C.
  • Ricardo Alonzo-Zaldivar
  • LA Times (latimes.com)

Tens of thousands of patients with oral cancer and other diseases that damage the body’s salivary glands are facing stiff barriers to air travel because of new security restrictions on carrying liquids and gels, say patients, health professionals and advocacy groups.

Instead of taking a one-hour flight from upstate New York to attend a conference in Washington next month, community college professor Cornelia Rea has decided instead to make a seven-hour road trip.

“When the new travel regulations came out, I said, ‘OK, that’s it — I’m driving,’ ” Rea said. “I don’t know what I’m going to do for longer trips in the future.”

An oral cancer survivor, Rea cannot swallow food because of radiation damage to throat tissues. She gets nourishment from liquid injected with a syringe into a small tube in her abdomen. Because her salivary glands were also damaged by radiation treatment, Rea uses sprays and a gel to keep her mouth moist, which helps to prevent infections and other complications.

Similar travel problems confront patients with Sjogren’s syndrome, an autoimmune disorder that shuts down the tear ducts and salivary glands and can affect other moisture-producing tissues. One Sjogren’s patient, who asked not to be identified, said that to make sure a bottle of eyedrops wouldn’t be confiscated, she tucked it into her bra before a recent flight.

“A lot of our patients are nervous about flying,” said Steven Taylor, chief executive of the Sjogren’s Syndrome Foundation, based in Bethesda, Md.

“Some patients have to sip water continuously all day because they have no saliva,” he explained. “Other patients have to use eyedrops several times an hour.” Some are canceling plans to fly, he said.

About 2 million to 4 million Americans have Sjogren’s. The nation also has several hundred thousand oral cancer survivors, and about 31,000 new cases will be diagnosed this year.

The consequences of going without water or eyedrops include discomfort, pain and other complications.

Some Sjogren’s patients complain of extreme dryness, a Sahara-like sensation spreading from their mouths to their stomachs. “It goes beyond just being an inconvenience,” said Dr. Philip C. Fox, former director of the Sjogren’s clinic at the National Institutes of Health. “Even standing in line for an hour without water could increase the chance of an infection.”

The Transportation Security Administration last month banned carry-on liquids and gels from flights after British authorities reported uncovering a plot to blow up airliners with liquid explosives assembled aboard from seemingly harmless items.

The agency is trying to accommodate people with health issues by making the rules a bit more flexible, TSA spokeswoman Amy Kudwa said. For example, liquid nutritional supplements and juice are allowed aboard in containers of 5 ounces or less, she said. Similarly, people who have a medical need to sip water can carry up to 5 ounces with a security screener’s approval.

The agency effort has not been working well, patients say.

Oral cancer survivor Brian Hill said that he got his doctor to write him a prescription for water but that it only seemed to make airport security screeners more suspicious. “Anybody who knows me knows that having a water bottle in hand is like wearing a wedding ring for me,” said Hill, executive director and founder of the Oral Cancer Foundation in Newport Beach.

The TSA recognized when it imposed the restrictions that it would have to make special rules for some — for example, permitting insulin for diabetics and formula for infants. However, Hill and Taylor, of the Sjogren’s group, said the agency seemed unaware that there could be problems for others.

They said the TSA had been inaccessible despite e-mails and other contact efforts.

“It is conceivable that, since there are many more diabetics in the country than oral cancer or Sjogren’s patients, the TSA simply overlooked the problem,” said Dr. Michael Alfano, former dean of the New York University College of Dentistry.

Some patients and relatives said even the TSA decision to allow liquid supplements in containers of up to 5 ounces showed that the agency did not understand their situation.

The reason: Liquid supplements such as Ensure or Boost typically come in factory-sealed 8-ounce containers. “Once opened, they’re no longer sterile,” said Gail Mackiernan, whose husband, Barry Cooper, is an oral cancer survivor. “You can’t put it in a smaller bottle and carry it for three to four hours and then safely ingest it.”

“I think there has to be a bit of a balance between what is cosmetic and discretionary and what is a medical necessity,” said Cooper, who lives in the Washington suburbs.

Some security experts say the new TSA rules are too sweeping and clumsy.

“This is really a blunt-force kind of measure,” said Robert Poole, director of transportation studies at the Reason Foundation, a libertarian think tank in Los Angeles. “An explosion large enough to destroy a plane, or so disable it that it can’t fly, is going to require more than a few grams of just about anything.”

Poole urged the agency to consider exceptions that would allow passengers to bring factory-sealed items aboard.

It’s unclear whether federal laws on disability rights apply to the TSA. A 1973 law requires federal agencies to make accommodations in access and employment for people with disabilities.

But Eve Hill, executive director of the Disability Rights Legal Center in Los Angeles, said the TSA had asserted in court cases over employment decisions that it was exempt from the 1973 Rehabilitation Act because of its security responsibilities.

The extent of the agency’s responsibilities toward passengers with disabilities has not been tested in court.

“I know the TSA is trying to accommodate people with disabilities,” she said. “But TSA’s struggle is that it wants to have across-the-board, blanket rules, whereas the disability community wants flexibility in rules, because everybody’s disability is different.”