The Board of the ABLCS has elected the late Mike McGarry as Board Member Emeritus. His example to us all in survivorship and bladder cancer advocacy was deemed by our board to be the standard our organization should always strive to exemplify. By electing him to this perpetual position on our board we hope to never forget the path he has paved for us.
I need to hear from 65yr olds out there who are trying to get Medicare to pay for their catheters. Their protocall is really old and outdated...they've never heard of an Indiana Pouch....they think we all have external pouches. My protests and my doctors protests have gone unheeded and a form letter sent back each time......only 4 caths allowed a month!!! PLEASE.........I have a prescription so i don't have to re-use them and my doctors said don't re-use them if you can afford it...you'll never have a kidney infection if you do...even the packaging says "DO NOT RE-USE".........i know you can wash them twirl them around and spray whatever comes out all over your bathroom and hope that you've gotten all the muucus out.......but why ... thats dumb.......You can't see if a red cath is clear of muucus...the clear ones are $l.l0 more than the red ones....but point is manufacturer says "DO NOT Re-USE".....I need support to take on these guys. Even tho i have secondary insurance they won't pay what Medicare won't pay......I'm on social security which isn't much. Anybody out there willing to fight with me? Its discriminatory to women as they are the ones who have the Indiana Pouches. Pat
Pat, while reading your dilemma with Medicare, a thought of going to CNN came to my mind. Why try to find that immense government agency alone. CNN is asking all with cancer to send in their story. I bet yours would be newsworthy enough to perk the interest of one of their investigative reporters. Putting something like "Medicare will not pay for cancer supply need" or something like that might get a response. If a number of us wrote in about our bladder cancer experience their would be more of the general public aware of the disease. This link is about a bladder cancer story but then directs you on how to submit your own story. www.cnn.com:80/2007/HEALTH/01/11/savingyourlife.henry/
Hi--I am Lorrie--wife of Joe--who is fighting his battle with Bladder Cancer. I am so sorry that your Health Insurance is creating only more stress for you at a time in your life when less stress would be so welcome. I have been a Nurse for 20 years and currently I work as a Health Care Coordinator-Nurse Casemanager for folks with Mental Retardation and have done so for the last 9yrs. I fight with Insurance Companies everyday to get for my Patients what they need. It is exhausting as they are paying for less and less. I currently work with a male patient who is straight cathed 3 times daily and they are paying for 4 red caths monthly--we boil them after each use --using 1 per week. His situation is far different from yours however. I don't know who your secondary insurance is but a letter of medical necessity (it's all in the wording) should be sent by your Physician to both insurances. I would be diligent in my quest for better services--don't give up--the squeaky wheel and all that. If nothing comes of that procedure call your community health services organization (number usually found in the blue pages of your phone book) and run your situation by them. I know where I live I have utilized Home Nursing Services (usually affiliated with a local Hospital) --approved through Medicare-- for several visits for my patients and they have worked their magic to get supplies/durable medical equipment approved.
Best of Luck To You!!
UPDATE.....aha...i finally got the ear of a responsible person with my secondary insurance who looked into it and found that i was just going straight to the Deny file....a computer was obviously handling my claims....but we outsmarted "Hal" and now my secondary is picking up 80% of my costs. It took me a year and a half...but they are going back over old denied claims and paying me....I feel like i just won the lottery!!!....So i guess it pays to be persistant and eventually you will get to someone who cares. Pat
I have to cath. every time also. I am of medicare age and they also told me only 4 a month even with a script. How did you get your supplies paid for? They looked it up in a book? and said that medicare would not pay for it. I called medicare and they said the same thing. I am getting frequent infections and that is costing me more money and extra pain with it. Now my doctor told me that I COULD use the same cath as long as I clean it up good. So I am concerned about the use of one for a long time. Any help or suggestions would be appreciated. Thanks Dee (fluffy)
Fluffy.......well it was a battle.....I forwarded letters from my surgeon and my local uro that stated that it was neccesary for me to have a clean catheter and explained the Indiana Pouch to them...that there was no way to get the fluid out otherwise....that i would be prone to expensive infections and hospitalizations if they didn't allow it......Those letters went into my file but apparently when the claims come in from Medicare they just go into the automatic reject file...they don't look up your circumstances. Anyway after many calls to my secondary insurance i got the ear of a very intelligent person who went into my file and made a note and suddenly i'm getting all back payments from a year and a half. Sometimes you just have to keep at them until you get the right person who actually listens and cares. But first step is to get the letters from the docs...keep copies..you may have to resend them.......Medicare still blows me off....They haven't a clue what an internal pouch is and they really don't care. I will however continue my battle with them....usually they put me on hold until i hang up the phone 30 minutes later. They won't even send me the form they supposedly get their protocals from and they're supposed to do that. Thats the government for ya!!.....Anyway i'm grateful that i finally got it straightened out with my secondary insurance.......Just be persistant and nice....and a tear doesn't hurt either........Pat