Monday, November 4, 2013

Lung Cancer Fliers Outraged Over Oxygen Tank Dispute [ TechSc1ence ]


PHOTO: Don Stranathan and Penny Blume at the third annual LUNGevity HOPE Summit in Washington, D.C.

Don Stranathan and Penny Blume, both battling terminal lung cancer, found love in an online support group and now that community is rallying around them after the couple was not allowed to board a US Airways flight as they were headed for a clinical trial for a new medication that could save Blume’s life.

The couple set out from New York on Oct. 24, but with multiple airline delays and a dispute over the oxygen tanks they were carrying, it took them three days to get to San Francisco.

For the last two years, Stranathan, 61, and Blume, 51, have juggled bicoastal cancer treatments and cross-country flights. He lives in Santa Rosa, Calif., and she lives in Sullivan County, N.Y.

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“Penny is so traumatized she will never fly again,” Stranathan told ABCNews.com by phone from the Stanford University Medical Center cancer unit. “She gets so winded now we couldn’t even get her to the (airplane) bathroom, which was just a short walk.”

Blume, who has been fighting the most virulent form of lung cancer for the last two and a half years, told ABCNews.com, “It was the fear of not being able to breathe and run out of oxygen. I had to keep turning it off.”

With medical trials around the country, those with disabilities have special challenges flying, especially when airline delays are at an all-time high.

“More and more people are flying with oxygen and no one was clear on requirements,” said Stranathan.

Lung cancer patients expressed outrage over the couple’s ordeal in more than 100 Facebook and Twitter posts on the research and advocacy site LUNGevity. “I have been praying for you,” wrote Audrey Davina Krahne. “And that this whole nightmare will end now.”

According to the National Home Oxygen Association, for those who require oxygen must “negotiate many obstacles” and traveling can be “challenging.”

Each airline has its own rules, policies are subject to change, and it’s up to passengers to make their own arrangements.

US Airways said they were only following regulations and that the couple didn’t have enough battery life on Blume’s oxygen device for the six-hour flight. Regulations for portable oxygen concentrators (POCs) are clearly stated on the airline’s website: “You should have enough battery power to run the device for at least 150 percent of the expected maximum flight duration, taking into consideration the possibility of delays or a damaged battery.”

The couple said they set off from Newburgh, N.Y., Oct. 24, heading for San Francisco with a connection in Philadelphia. They said they had an oxygen device with more than five hours of battery life, which they thought was adequate.

“We got all the paperwork from her doctor to take it on the airplane,” said Stranathan. “All was in order.”

Neither the airline nor the couple dispute what happened next.

The first flight from Newburgh, N.Y., to Philadelphia for a connecting flight was cancelled and they were rebooked three hours later. But when they boarded the flight in Philadelphia, the flight attendants questioned their device, and when it did not meet regulation, they asked the couple to deplane. It was now 11 p.m.

Airline staff had suggested a company that could overnight the oxygen batteries to Philadelphia, but the cost, at $ 1,000, was prohibitive, said Stranathan.

US Airways put the couple up for the night in a hotel and flew them back to Newburgh to get more batteries the next day. They were rebooked via Philadelphia to San Francisco.

The couple’s clothing and medical supplies were in bags that had been checked in. Blume has a golf ball-sized external tumor that needed medical attention and they said they could not find dressings or ointments at the airport.

“We were not prepared for this … expected to be in Santa Rosa tonight,” wrote Stranathan on his Facebook. “We have Penny’s pain medication but were not prepared to change the dressing on her tumor – all that stuff is in SFO with her clothes.”

Stranathan said US Airways should have informed them of the battery-life regulation on the first leg of their trip, not once they had arrived in Philadelphia and boarded the plane.

The volume of tweets and Facebook posts caught the attention of the airline’s customer service department and they sent the couple an apologetic email, which Stranathan provided to ABCNews.com, with two $ 50 vouchers for future travel.

But Stranathan has called that an “insult” and said he plans to file a complaint under the 1990 Americans With Disabilities Act.

His friends from the lung cancer community were similarly upset.

“Seriously, that’s all they valued a passenger at?” wrote Debby Marcus Fonseca on Facebook.

US Airways expressed sympathy for the couple’s anguish, but told ABCNews.com that their regulations protect passenger health.

“We apologize to Ms. Blume for any inconvenience she may have experienced as a result of us not realizing the battery limits of her portable oxygen container at the beginning of her trip from Newburgh to San Francisco,” U.S. Airways spokesman Andrew Christie told ABCNews.com.

“They were booked from Newburgh to San Francisco, but when they arrived in Philadelphia, we discovered Ms. Blume had only four hours of battery time on her oxygen container,” he said. “The flight time was six hours and 20 minutes, and the letter from her doctor stated she could only be out of oxygen for five minutes maximum, so we had to deny boarding for her own safety until she could find more batteries.”

Allowing time for connections and delays, the batteries were “totally inadequate,” Christie said. “She had a pretty narrow safety window.”

The couple eventually made it to their clinical trial at Stanford University Medical Center, which is Blume’s last shot at treatment for her cancer, according to Stranathan. Her condition is now critical, and she requires constant oxygen to breathe. The former waitress has exhausted all radiation and chemotherapy therapies and hopes to get some benefit from a new antidepressant that has shown promise in treating her small-cell cancer type.

In an email to US Airways, Stranathan wrote about their trial and the dashed plans: “… if it didn’t work we were considering palliative care and getting her back to New York to be with family. Do you really feel $ 50.00 is compensation for being separated from family in your final months?

“Your whole Twitter page is pink for breast cancer month, but your employees treat people with lung cancer and compromised immune systems like they are lepers. No one deserves cancer or to be treated the way we were the first day of this ordeal.”

Christie said the airline, “tried to work with her,” trying to find additional batteries and eventually flying her back to Newburgh “for no additional fee.”

“We wish the best for Ms. Blume in her cancer treatments,” he said.

In 2009, Stranathan was diagnosed with non-small-cell adenocarcinoma, a much more treatable cancer that has responded to radiation and chemotherapy. He has been taking the oral medication Tarceva and his cancer remains stable. Blume, on the other hand, has three lesions on her brain and a large-cell lesion on her breast.

The couple, both divorced and with adult children, met on the health and wellness website Inspire.

The couple credits LUNGevity as lung cancer survivors helped to bring their frustration to the attention of airline officials.

“I got updates all over Facebook and Twitter from Don about all the difficulties they were having and my heart just broke for them,” said Katie Brown, director of support and advocacy for the foundation LUNGevity..

“I wanted to help,” said Brown. “The only way I knew how to do that was to repost their story and hope that it would get some attention and someone would help them get to their destination safely.”

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