What to do when you are underinsured

husdog75

 

My wife was diagnosed with Adenoid Cystic Carcinoma.  Its rare and about 2000 people in the US get a year.  She went in for having trouble walking(balance) and back pain.  Its Cancer of the Salavary glands However it was not in her salivary glands it moved to her spine near her trachea.  They had to do a 6 hour spinal fusion to move the tumor away from her spine so it could be radiated.  

She came home and did some recovery and keep in mind that she needs a walker and wheelchair since her balance is still not there and it may never be.  Did the Pet scan and they found other masses small though one in her hip and one her lymph node.  Moving forward she was in the middle of 33 treatments of radiation when her left eye started seeing colors.  Went to eye doctor and also had an MRI.  eye doc found something behind her left eye and sent everything to Wills eye in philly.

MRI results found a small mass on her brain that they radiated immediateely and this is where my dilemma comes in.

 

We did all the pre requisites and screenings for Will's eye (who are the best in the country we were told).  Sent insurance info and filled out all the forms and were ready for our appointment @ 6am!!!!!!.  We get there and the staff is awful we felt like we were just cattle...."sign in there" a lady exhalted.  I was not allowed to stay with my wife so I went into the parking garage to stay in our car as they said the tests take 6 hours.

15 minutes later my wife calls saying they are missing a form.  We had everything printed out so I went to the elevator to bring it up.  Yet another call from my wife now saying they dont take our insurance.

I ask ok what can we do?  They said the visit is $3000 and I am like ok can we work out an arrangement?  They said no its paid in full at time of service.  I said should we have been notified?  The woman said someone should have let you know and I was getting upset I yelled obviously you guys didn't!!  SO I said so there is nothing we can do?  She shrugged her head and went back to doing what she was doing.  We were turned away and let me tell you that drive home was bad.

I tried contacting my insurance to get an exception but to that would cost us 2100 a month in premiums.  I am self employed and haven't been working my normal number of hours.  I tried appealing to Will's eye as it says clear as day in their website that they work with those who are having difficulty financially.  The response was very telling it simply said you need better insurance.

So this is where we are right now.  I tried applying for a care card which is a credit card for medical procedures but we were denied.  My wife holds her left eye all the time complaining of headaches and eye pain.  I feel helpless and responsible because if I made more money I could afford better care which is sad because her care up to this point has been very good.

My insurance does not cover anything outside the state of NJ and ocular oncologists are rare and exist only in the major cities i.e. Philly and NY.

I don't know where to turn

 

 

 

 

 

abrub

Someone who might help

I know someone who helps in cases like this - look up Laurie Johnson Todd on FB.  She prides herself in being "The Insurance Warrior" - having learned the ropes initially to deal with her own rare cancer (Appendix cancer, same as my cancer.)  Or look up The Insurance Warrior on the web.

Good luck.

CSN_Elena

Hi husdog

It sounds like you and your wife are going through a difficult time.

I wanted to mention that CSN is part of the American Cancer Society. ACS provides information and services for patients and caregivers, including resources for financial assistance for various treatment and non-treatment related expenses. 

I encourage you to please reach out to us at ACS's National Cancer Information Center.  You can call our toll-free number, 1.800.227.2345, where Cancer Information Specialists are available around the clock every day of the week to speak with you (24/7/365). You can also utilize the Live Chat feature Monday through Friday between 7am-6:30pm CST on www.cancer.org. Our cancer information specialists can discuss resources with you and much more. 

Best Wishes, 

Elena

CSN Support Team 

husdog75

abrub said:

Someone who might help

I know someone who helps in cases like this - look up Laurie Johnson Todd on FB.  She prides herself in being "The Insurance Warrior" - having learned the ropes initially to deal with her own rare cancer (Appendix cancer, same as my cancer.)  Or look up The Insurance Warrior on the web.

Good luck.

 

 

I will do that thank you for that info