When you try to advocate for a drug trial for a rare disease, you expect certain obstacles. You expect funding issues, drug company issues, politics and medicine issues. But, who would ever guess a United Airlines counter clerk, or a Transportation Security Administration (TSA) worker screening passengers at the airport could potentially throw a treatment for an entire disease off the rails.
Most of our drug trial participants travel to the NIH from Puerto Rico. Because of a genetic founder’s effect on that island, the Hermansky-Pudlak Syndrome type of albinism is more common there.
In January a new Western Hemisphere treaty came into effect essentially requiring a passport any time you travel outside of the country. (It used to be you could fly to many Caribbean locations and Mexico with only your driver’s license.) The treaty does not, however, include travel to any U.S. territory. Puerto Rico is a U.S. territory. The people that live there are U.S. citizens, even if their identification is in Spanish.
Our HPS’ers from Puerto Rico routinely fly a United Airlines flight between San Juan, Puerto Rico and Dulles Airport in Washington, D.C. to go to their appointments at the National Institutes of Health.
It seems, however, that the ticket agents and the TSA staff are rather confused about Puerto Rico. They seem to think it’s a foreign country and are demanding passports from our HPS’ers. So far, thanks to the handy work of Hector the cab driver (the NIH contracts with him to pick our patients up at the gate and deliver them to the hospital.); no one has actually been refused boarding – eventually. But, for someone not used to traveling, the drama can be quite scary.
NIH’s original response was that, just to be safe, HPS patients should get passports. The problem is passports aren’t cheap and many of our patients are living on disability. They can’t afford passports. While I’d do anything for the protocol – including raising money for passports if I had to – it seems unreasonable to incur this expense when, in fact, the law says they don’t need passports.
The HPS Network is a small outfit. We don’t have money for all the things we need – let alone the things we really don’t need.
So, this week I’ve spent a grand total of eight hours talking to United Airlines staff about the problem.
It’s no wonder there’s confusion.
Even the United Airlines Web site has incorrect information according to the airline’s own policies.
The confusion is partially stemming from the fact at in United Airlines internal corporate culture, Puerto Rico is viewed as an international destination. Thus, all of the international protocols are automatically brought up.
After all this time of talking, going through three separate phone numbers, being transferred repeatedly back and forth between customer service and reservations, I think I’ve finally nailed down what our patients need to tell the airline personnel should they run into trouble. Apparently the airline has an internal system with various rules and regulations, and I found out where in this system the rule is specifying that Puerto Ricans don’t need a passport to travel from the island to Washington D.C. We’ll simply need to train people to ask for a supervisor, and then tell the supervisor where the rule can be found in their own system.
I hope that by being forewarned of the potential misunderstanding, our patients won’t be so unnerved if this continues to happen.
I do intend to follow up with a letter. I felt as though the people I talked to didn’t quite appreciate the gravity of the problem. Our patients shouldn’t be put through this. Having to ask for a supervisor, while an adequate solution, is hardly an ideal one. What the airline should be doing is a little training for the people that work this flight. This will do for the short term though.
In the meantime, I’m still working on the TSA. They told me I could file a complaint and sent me a form. The form they sent me, however, is designed to appeal should you find yourself on the “no fly” list.
I’m at work during working hours, and thus it’s sometimes hard to spend the required amount of time on hold or being transferred around to work on this – but we’ll get it solved.
Who would have ever guessed?
Most of our drug trial participants travel to the NIH from Puerto Rico. Because of a genetic founder’s effect on that island, the Hermansky-Pudlak Syndrome type of albinism is more common there.
In January a new Western Hemisphere treaty came into effect essentially requiring a passport any time you travel outside of the country. (It used to be you could fly to many Caribbean locations and Mexico with only your driver’s license.) The treaty does not, however, include travel to any U.S. territory. Puerto Rico is a U.S. territory. The people that live there are U.S. citizens, even if their identification is in Spanish.
Our HPS’ers from Puerto Rico routinely fly a United Airlines flight between San Juan, Puerto Rico and Dulles Airport in Washington, D.C. to go to their appointments at the National Institutes of Health.
It seems, however, that the ticket agents and the TSA staff are rather confused about Puerto Rico. They seem to think it’s a foreign country and are demanding passports from our HPS’ers. So far, thanks to the handy work of Hector the cab driver (the NIH contracts with him to pick our patients up at the gate and deliver them to the hospital.); no one has actually been refused boarding – eventually. But, for someone not used to traveling, the drama can be quite scary.
NIH’s original response was that, just to be safe, HPS patients should get passports. The problem is passports aren’t cheap and many of our patients are living on disability. They can’t afford passports. While I’d do anything for the protocol – including raising money for passports if I had to – it seems unreasonable to incur this expense when, in fact, the law says they don’t need passports.
The HPS Network is a small outfit. We don’t have money for all the things we need – let alone the things we really don’t need.
So, this week I’ve spent a grand total of eight hours talking to United Airlines staff about the problem.
It’s no wonder there’s confusion.
Even the United Airlines Web site has incorrect information according to the airline’s own policies.
The confusion is partially stemming from the fact at in United Airlines internal corporate culture, Puerto Rico is viewed as an international destination. Thus, all of the international protocols are automatically brought up.
After all this time of talking, going through three separate phone numbers, being transferred repeatedly back and forth between customer service and reservations, I think I’ve finally nailed down what our patients need to tell the airline personnel should they run into trouble. Apparently the airline has an internal system with various rules and regulations, and I found out where in this system the rule is specifying that Puerto Ricans don’t need a passport to travel from the island to Washington D.C. We’ll simply need to train people to ask for a supervisor, and then tell the supervisor where the rule can be found in their own system.
I hope that by being forewarned of the potential misunderstanding, our patients won’t be so unnerved if this continues to happen.
I do intend to follow up with a letter. I felt as though the people I talked to didn’t quite appreciate the gravity of the problem. Our patients shouldn’t be put through this. Having to ask for a supervisor, while an adequate solution, is hardly an ideal one. What the airline should be doing is a little training for the people that work this flight. This will do for the short term though.
In the meantime, I’m still working on the TSA. They told me I could file a complaint and sent me a form. The form they sent me, however, is designed to appeal should you find yourself on the “no fly” list.
I’m at work during working hours, and thus it’s sometimes hard to spend the required amount of time on hold or being transferred around to work on this – but we’ll get it solved.
Who would have ever guessed?
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