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The Air Carrier Access Act (ACAA) of 1990 says that airlines can’t discriminate against people with disabilities on U.S. and foreign flights. The U.S. Dept. of Transportation (DOT) has rules under the ACAA to help people with disabilities travel by air especially those traveling with an assistive device such as a portable dialysis machine.

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“Guidance on the Transport of Portable Dialysis Machines by Travelers with Disabilities”. http://www.dot.gov/airconsumer/notice-portable-dialysis-machine

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Heading to the AAKP meeting in Las Vegas, I booked a flight from Quincy, IL to St. Louis, MO for travel on Thursday, September 25, 2014 with Cape Air, a commuter airline with small planes. I contacted the corporate office in advance to explain that I would be taking my dialysis machine on the plane. The NxStage machine in its travel case weighs 100lbs, and Cape Air had taken it before. Their representative checked with someone and said, “ Yes it would be ok to take,” and we discussed the weight and size of the machine and how it would work. The representative contacted the Quincy Airport staff to let them know the machine would be on the flight. They stowed the machine in the back of the cabin and all went well with the flight from Quincy to St. Louis.

“US Department of Transportation (DOT) document which was designed to implement the Air Carrier Access Act of 1986. This 16 page document (14 CFR Part 382) outlines “Nondiscrimination on the Basis of Disability in Air Travel”. http://airconsumer.dot.gov/rules/382short.pdf

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As it turned out, taking the machine on the flight did not even seem to affect Cape Air’s ability to carry a full plane of passengers:

When I arrived in St. Louis at the Cape Air ticket counter, the man complained that Cape Air should not be taking my machine and they had to vacate seats for it, etc… He would not take the machine as a checked bag at the ticket counter, as it had been done before. Instead, I had to go through TSA especially for the machine, a TSA manager had to be called, and it turned into a big deal that took 90 minutes. After I got home and shared my story, NxStage, suggested that I file a complaint with the Department of Transportation.

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Unfortunately, before I headed home on Friday, September 26, 2014,I received a phone call from Cape Air customer service stating that they would not be taking my dialysis machine on my return flight because it did not meet their weight regulations of 70lbs!

I had to leave the meeting to take her call because I was very upset, shaking, and feeling as though my life was being threatened. After some heated discussion I said, “ You cannot leave a disabled women standing in the middle of the St. Louis Airport with a dialysis machine—a treatment I need every day to stay alive—with nowhere to go! ” She said she would get back to me.

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Some tips for flying with a portable dialysis machine from a Life@Home article on Home Dialysis Central:

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The law is clear that people traveling on an airplane with a portable dialysis device such as a PD cycler or NxStage hemodialysis machine should not encounter any difficulties. However, problems still happen, so be prepared. The intent of the DOT regulations, Guidance on the Transport of Portable Dialysis Machines by Travelers with Disabilities is to remind airlines of their obligations and inform people with disabilities of their rights regarding the use and transport of portable dialysis machines.

Luckily, I had the Disability Hotline number with me . The hotline staff was also upset on my behalf, because an airline cannot change travel arrangements they had already agreed to while a passenger is en route. Within a short time, Cape Air called me and said they would “make an exception this time” and take my machine on their return flight because they rearranged some of their inventory, but “would not be able to do it again.”