Up and down emotional swing

[Susan L]

Hi - In this past week - Actually since last Friday - Between my doctor and the insurance office - I have been approved - disapproved - and approved and disapproved for my treatment. My emotions and nerves at this point are distroyed. I have been on Dacogen - no good for me - caused more chromosome abnormalities - Vidaza - caused more chromosome problems - now it show C Kit positive (which I still am not too sure of) Doctor suggests Gleeve (which is very good for the C Kit positive problem now) - Insurance thru my employer (which I work for a hospital and the hospital owns the company and most of the doctors that are in our system) has farmed out to a company which says it is for you (the patient) but is paid thru the insurance company and doctors (who remember are owned by the hospital) to ok the treatment for the patient. Tell me this is not a catch 22 --- I am sorry if I sound perturbed cause this has really put me in very digusted mood. I am trying to work fulltime, keep my pay so I can for my insurance to pay the doctors and pharmacy (which by the way the hospital also owned till they got a lease thru another pharmacy chain for a couple of years and then go back to the same as they were before- explain that one to me cause I am lost in the translation on that one). I guess I am just letting some steam off but I would truly appreciate any comments as to what to do - or just let your steam out too!

[cheri]

Oh Susan,
Isn't it frustrating? All of the mumbo jumbo we have to go thru to try to get medical care! I swear, I get so overwhelmed sometimes, wondering what to do, who to see, what comes next.
Just remember, things will play out as they should....I have become very used to saying ...."whatever"! At least I'm not in the hospital right now as I was last year. Tomorrow marks the 1 year anniversary of my release after
2- 1/2 months @ Jefferson Univ Hosp in Philly....
So if you are feeling good today, then you are ahead of the game--I have had transfusions all week and am just waiting for the day my platelets leap into good territory.....I hope it is soon! And I wish you the best!
Hopefully, someone on this great site can give you some advice you can actually use-- Hang in there!

[Chirley]

Hi, yes, I know where you're coming from.

Vidaza was not approved on our Governments PBS until starting February this year, so when I needed to start it May last year I applied to my health insurance to totally or partially cover the cost. They have a special fund to help people cover the cost of non PBS listed drugs.

My request was refused on the basis that the drug wasn't PBS listed so must be considered experimental and they would not fund those type of drugs. With that logic it means they would NEVER help anyone with any non PBS drug which is why the fund was set up in the first place. Talk about Catch 22. Nothing but greed. They would't even help with the cost of my copper needles which are also non PBS and $122 a week. There is no way copper replacement is experimental but this time they wouldn't even give a reason for declining. I'm sooo over it. I have paid out over $45,000 for drugs in the last 8 months. I can't keep paying out like this for much longer, I really need to go back to work but my employer won't let me because I still can't walk properly and what use is a nurse on a wheely walker?


I have been paying into the same health fund for many years and until I developed this problem, the only time I had used them was when I had a neuroma removed from my foot in day surgery back in 1990.

Ahh, that felt good. Venting over.

Good luck.

[Susan L]

Thank you both for your replys - I know there is alot of us out there. It is the most hurtful situation to be in after working all your life to help others and paying into the insurance all your life and when you need it - forget about it! Anyway - I dont know what to do.

[tytd]

Hello Susan, There are many of us out here that can commiserate with you. I remember 2 years ago talking to an insurance representative on the phone and barely coming to tears because they had such a cold, hardened attitude. I was trying to get a charge for FISH analysis of my bone marrow approved. It had not been approved because the lab who did it put in the wrong code on the claim and I was being asked to pay for their mistake. I finally persisted after months and they stopped sending the bills. I know sometimes you feel like giving up but you have to be persistent in going up against insurance companies who deny payment for legitimate claims. I'm sorry I can't speak to the use of Gleevec in your situation. Anyway, I just wanted to mention that there will be a webinar sponsored by AAMDS this coming Wednesday at noon which will discuss MDS and Health Insurance. You can go to their website and sign up if you have the time. Good Luck and hang in there. tytd

[cathybee1]

Originally Posted by Susan L

Anyway - I dont know what to do.

We had success several years ago by appealing to the State Insurance Commissioner, when a treatment that was deemed medically necessary by our doctor was turned down by the Insurance Company "review board"

[Susan L]

Thank you guys- I am going to see what happens Monday and I have been thinking about calling the Insurance Commissioner. I am still working for the hospital that owns the insurance company - I am afraid of getting in trouble thou. It is a small town - compared to the larger cities. I am not going to give up. It sure does beat ya down. I have been having alot of different issues the past two weeks and need to talk w/the doc again. Hang in there too you guys.

[dsandrock91]

I recently just lost my medicaid through the state and had to cancel appointments with doctors and have not been able to get my labs done. With me loosing my insurance I worry even more about my levels. I have contacted my local job and family service office and they are no help in telling me why I was dropped; they just keep telling me to reapply and see what happens. Have contacted the hospital I go to and they are not much help either. Feeling lost and scared not sure what to do.