Status
Not open for further replies.

SueG

Distinguished member
Joined
Sep 30, 2010
Messages
213
Reason
PALS
Diagnosis
09/2010
Country
US
State
ME
City
central
Glad there is a Rant & Rave page.
First, I know I am lucky to have insurance.
BUT......
they sure do like to string you along!
On Nov 16th my ins co denied a referral to the ALS clinic at Massachusetts General that my local neuro had referred me to. I immediately called, was told that the powers-that-be had determined that I didn't need to go out of state, even though there is no ALS clinic in Maine, I then called my Drs office to get them to start a reconsideration process. Meanwhile, I applied to my ins co to have a care manager. also meanwhile, a second referral that I had requested to the ALS clinic at Lahey (also in MA, I wanted to check out both options) was approved. huh?
So now it is early December, I've been to both clinics and decided MGH is a better choice for me, and I have a care manager and I ask her simply to arrange for a transfer of the approval for Lahey to approval for care at MGH. She assures me she will get back to me in a couple of days.
January 4th after several messages left on her machine, she leaves me a message telling me I need to call the main number and ask to start an appeal. In other words, having a case manager means nothing except I've been wasting my time.
I call the main number. A polite young woman named Erica assures me she understands the situation and will look into getting the referral switched, and will call me back. That's the last I hear from her.
After 10 days I call back my case manager and tell her message machine I'm sick of the run-around and need some answers. After some back-and-forth, she determines that the referral can't be switched and arranges for someone else to call me to get the appeal underway. I was almost in tears by the time I spoke to that person.
Any bets on whether the appeal paperwork she said she'd send will arrive, and when?
I am so frustrated! It's been over two months!

And this is only the beginning.........
 
Sue, I am so sorry that you are getting the run around. I wish that people would just do their jobs and understand what it feels like to be in our position.
 
Sue, I am so sorry you're running into this nightmare. We learned in hindsight to always appeal. The systems are set up to make money, not help you. In one instance the first request went to an automated computerized denial, followed by an appeal to a nurse, followed by to a (successful) appeal when a doctor decided in our favor.

In another instance there was no code number for my equipment, and by repeated phoning, we were reimbursed nine months later.

I lost all therapy services by October of '10, so skipped Clinic. Only because my husband is a Federal employee were we able to switch companies for 2011. You sort of have to determine that although you will be polite, you will fight, and expect the fight as normal business. That, sadly, is your only defense.
 
Sue-
What a mess. You have every reason to be frustrated and angry. As if it's not stressful enough to have ALS. I'm so sorry you have to deal with this.

I only experienced a couple of denials and appeals early on, but my first insurer buried us and our docs with forms and paperwork. It all seemed designed to deter us from filing a claim.

You may already know this, but ALS is a "disability" that can qualify you for social security disability income and Medicare. Since qualifying for Medicare, all my ALS-related claim approvals are automatic and covered at 80-100%. It takes some effort to get approved, but it's been well worth it for me.

If you're interested, here's a useful link. It only takes a minute to see if you qualify:

Medicare.gov - Medicare Eligibility Tool (Eligibility Questions)

Hang-in there. Meanwhile, maybe you could make an insurance company voodoo doll?! ;-)
 
Does Maine have an insurance watchdog division mandated by the state? If so, you could
inform them of this run around and hopefully get some action. Best of luck.
blessings, Pat
 
Sue. This happened to my husband when we were just getting started. Long story short, I did file and appeal, a 2nd appeal, a 3rd appeal and finally we had a hearing. We won. Now, everyone in our area that suspects ALS can go to the only doctor in our area that diagnoses ALS. Keep fighting. You WILL win.
 
thank you, all, for your helpful ideas and encouragement. It helps. Yes, I can be persistent, and I will get used to filing appeals, I'm sure-- but you all relate to the "aren't we already dealing with enough?" feeling. I expect that within the year I'll be on SSD & Medicare- am still working 60% time (fortunately I telecommute and have flexible & understanding coworkers) but I don't think that will be sustainable. I also am trying to take a deep breath and remember that I'm not going to let the insurance company hasten my demise by getting me stressed out for long. That's why it's so great you all are here. Thanks!
 
After the first appeal, we relaxed. I knew we would win, so I stopped stressing over it. The doctor was wonderful. His accounting office just kept rolling the bill. They knew we would win, too. It will all work out.
 
Status
Not open for further replies.
Back
Top