Wednesday, July 15, 2009


Don't Fight Me. You will. not. win.

I've edited out personal stuff-like phone numbers, ID numbers, and dates. So some sentances might be odd.

To Whom It May Concern:

This letter is regarding Joseph P’s oxygen needs.

Joseph has Familial Dysautonomia (FD), a rare genetic disease. FD is caused by dysfunction of the autonomic nervous system. The autonomic nervous system controls all involuntary body activities such as swallowing, temperature regulation, blood pressure regulation, and breathing. Because Joseph has FD, all of these activities are impacted.

When Joseph flies on an airplane, he has increased oxygen needs. When the cabin is pressurized on a plane, the oxygen in the air decreases, and your body’s autonomic nervous system sends a signal to the lungs to breath deeper to maintain adequate oxygen levels. Because Joseph’s autonomic nervous system does not function correctly, when the plane is pressurized, Joseph’s lungs do not get the signal to breath deeper. Without supplemental oxygen on a plane, Joseph will not take in enough oxygen. Within minutes, his body will not receive enough oxygen and he will go into respiratory distress, ultimately leading to death if supplemental oxygen is not administered. He cannot be off of the supplemental oxygen even for a few minutes-this will lead to respiratory distress almost immediately.

Joseph will be traveling to New York. He will be traveling from Chicago to New York to see his orthopedic surgeon, Dr. David Feldman, for a follow up appointment from his leg lengthening osteotomy and foot reconstruction surgery that was done in New York by Dr. Feldman at NYU hospital on XXXXXXX. It is medically necessary for Joseph to travel to New York to follow up with Dr. Feldman.

Therefore, we are requesting that XXXXXXXXXextend coverage to Joseph for the Sequal Eclipse Portable Oxygen Concetrator.

The Sequal Eclipse is the only airline approved oxygen concentrator that offers continuous oxygen flow versus breath triggered oxygen flow. This is important because Joseph’s body will not automatically breathe in without constant oxygen flow. Additionally, the Sequal Eclipse is portable. This is important because the oxygen which is rented from the airline is often tethered to the overhead compartment, thus making it unable to be moved. If the oxygen cannot be moved, Joseph is unable to use the bathroom facilities on the airplane without being detached from the oxygen. If Joseph is detached from the oxygen, even for a short time to use the facilities, he will turn blue and pass out.

Additionally, the Sequal Eclipse can be used at our destination overnight. Joseph is dependent on oxygen over night at a rate of one liter attached to his BiPap machine. Without the Sequal Eclipse, it would be necessary for Blue Cross to arrange oxygen rental in New York at additional cost to the company.

We are also requesting that Blue Cross extend coverage for the Sequal Eclipse to be used as our back up oxygen concentrator in the home instead of a large, non portable oxygen concentrator. Joseph currently utilizes liquid oxygen for home use, but requires a back up device to ensure ongoing oxygen services in case of liquid failure or leak.

The Sequal is an efficient, cost effective method of portable oxygen for Joseph. It is medically necessary for Joseph to receive coverage for the Sequal Eclipse.

Attached is additional information about Familial Dysautonomia and the Sequal Eclipse, as well as a prescription from Joseph’s primary care physician for the device.

If you have any questions, please feel free to contact me, Sara P, Joseph’s mother, at XXXXXXXXXX, Joseph’s PCP, XXXXXXXXX, at XXXXXXXXXX, or Joseph’s Familial Dysautonomia specialist, Dr. XXXXXXXX, at XXXXXXXXX.

Thank you very much for your prompt approval of this medically necessary device.


Sara P


Anonymous said...

Well done!
I think that should do it!!!!!

WriterGrrl said...

I can only pray that one day the morons who run insurance companies will be subject to the quality of their own standard of care.

DESJ and Company said...

Why are you commenting? Don't you have a 3 day old to nurse? You loon, WriterGrrl...

And yes. It's ridiculous. The standard of care is just appalling.

Miriam said...

Great letter!

Stephanie said...

let us know when they deliver the sequal!

Nahum said...

You go Sara!

porushmom said...

They should be afraid, very afraid! They just don't understand who they are dealing with. Way to go Sara!

Anonymous said...

You go girl!

chaviva said...

NIce letter.

connie said...

Writer girl is probably commenting because she's afraid you will stop blogging if she doesn't! I know I've learned my lesson!

So do you offer consultation services to help people write letters like these? I bet this one will be successful. I especially liked how you painted a very clear picture of ... how he can't go to the bathroom without disconnecting ... and he will turn blue and pass out. Nothing was left to their limited imaginations.

rickismom said...

Well, the beauracracy of these places never ceases to amaze me! B'hatzlacha!

lana said...

Can I please copy for my own future use ;). Well written as usual!!!