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pegintron ribivirin hep C "Disability"
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pegintron ribivirin hep C "Disability"

I don't quite know how to explain this because at this point a whole array of medical and insurance professionals seem unable to understand the difference being unable to work based on  the side effects of the medication and being permanently disabled due to hepatitis or the effects of it.

I'm on my second course of treatment. I have a job with insurance and disability coverage. And yet I have been going through a fiasco regarding what the need for time off or sick time/disability is and why and when that is called a "disability."  All this centers on the difference between the debilitating effects of the treatment as opposed to the long term problems of Hep.

I am at 16 months of treatment. At around 10 months of treatment (out of 18) I was told that I would have to fill out this info for "long term disability" from a secondary insurance company and then if it didn't get done by a point at which I had accumulated 1080 hours of disability time (non-contiguous) I would risk not getting the payment (60 percent of regular pay). I can't couldn't afford to be off with no pay and if I breached that time frame it wasn't allowed I would be screwed. 5 months later they are still telling me they haven't been able to "make a determination." So at about 3 months ago I started reducing my medications so I wouldn't need the time off because it's the only choice I have.  

As of this week (Friday) I have stopped taking the medications because I had gotten so worn down and messed iup I could no longer maintain it and got to work. Again, I have been put in a situation where I have no other choice. I called repeatedly to the insurance company, to Mercks hotlines etc trying to figure out how persons in the medical field could not understand the difference between the disabling effects of the treatment and a long term disability due to the condition.

So essentially after a second course of treatment, from about the 13th month on (now at 16) my treatment has been compromised by the inability of medical professions to differentiate this, and the never ending back and forth about verifying it now culminating in no longer being able to take the medication.

I HAVE  A JOB AND INSURANCE. HOW IS THIS HAPPENING.

Mike
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1225178_tn?1318984204
What kind of doctor are you going to? You need somebody who really understands what tx is like.... at least a GI... a Hepatologist would be even better. The doctor would be able to deal with the insurance company with terminology that they can understand.

Diane
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315737_tn?1407302597
It is a GI. and in fact Ive been to specialists even further up the chain at U of M. The issue is with the people at our work payroll and benefits and then this secondary insurer that it gets turned over to after a certain amount of time off.
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1717054_tn?1316716253
Wow...what a mess.  I'm sorry that I don't have much to say to you that will help, only that you have my sympathies. You are SO right...this should not be happening.  It almost seems like you can hold them accountable for your unsuccessful treatment in some way.
Best wishes for you!
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315737_tn?1407302597
I was talking to the insurance company person and I told him that the issue was the side effects from the treatment and not the disability afterwards and that I couldn't maintain going to work without cutting down on the medication and that is why I started contacting them and trying to get this clarified and he said but part of the problem is you have been showing up for work so how can you need the disability time?
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315737_tn?1407302597
I was talking to the insurance company person and I told him that the issue was the side effects from the treatment and not the disability afterwards and that I couldn't maintain going to work without cutting down on the medication and that is why I started contacting them and trying to get this clarified and he said but part of the problem is you have been showing up for work so how can you need the disability time?
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446474_tn?1404424777
Mike,

I am sorry but either I can't understand your post or something is getting lost in translation somewhere. But here is my best shot at answering some of your questions.

"5 months later they are still telling me they haven't been able to "make a determination."
Who said this?

Assuming you have worked long enough at this company to qualify for assistance...

Your private insurance has its own contract, requirements and benefits which I am not aware of so I can't comment on what you are required to do or what they are required to do. So I'll talk about the options I know of relating wot work and illness.

The first is FMLA. Family Medical Leave Act. For time off to care for yourself. You can take up to 90 full days off within a year. It doesn't have to be continuous. But there is no money given for time off. So that won't work for you.

Second. The only way I know of to get paid and have time off is state disability. I live in California so it may be different where you live. I believe they have to keep your job for you for a certain period of time but after that you can be let go.

California Eligibility for Disability Insurance (SDI)

DI benefits can be paid only after you meet all of the following requirements:

* You must be unable to do your regular or customary work for at least eight consecutive days.
* You must be employed or actively looking for work at the time you become disabled.
* You must have lost wages because of your disability or, if unemployed, have been actively looking for work.
* You must have earned at least $300 from which SDI deductions were withheld during a previous period.
* You must be under the care and treatment of a licensed doctor or accredited religious practitioner during the first eight days of your disability. (The beginning date of a claim can be adjusted to meet this requirement.) You must remain under care and treatment to continue receiving benefits.
You must complete and mail a claim form within 49 days of the date you became disabled or you may lose benefits.
* Your doctor must complete the medical certification of your disability. A licensed midwife, nurse-midwife, or nurse practitioner may complete the medical certification for disabilities related to normal pregnancy or childbirth.
* If a spouse, registered domestic partner, parent, or child is providing care for the claimant, he/she may be eligible for Paid Family Leave benefits.

So you can't have gone to work while telling them you are disabled. If you are working you are able to work.
How to apply for state disability: Call me sick then see your doctor. Have your doctor write a note saying you can't work. Contact HR and tell them of the situation on the phone and fax it to your HR department.

The Third option is Social Security Disability (SSDI) or Social Security Income (SSI). It is for truly seriously disabled people or people who have a fatal illness. You don't qualify for this. You have to prove that not only you are unable to do any work but you won't be for some long time period. I.E. If you were to have a liver transplant you are considered disabled for 1 year.

"I was told that I would have to fill out this info for "long term disability" from a secondary insurance company." Who told you this? From what I know, long term disability is just what the name says. It doesn't seem appropriate for your condition. But again I don't know what the contract with them is.

"I am at 16 months of treatment." Why? At 13 months you started reducing your meds? Why didn't you end treatment at 48 weeks? How long were you going to treat? When did your viral load become undetectable? How often was it tested?

This is at U of M?

Good luck.
Hector
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Avatar_f_tn
I don't really understand the specifics of your post.  I get that you're having trouble with time off but I don't get who some of the players are. How well do you independently understand your benefits through your employer?  Does the information being fed to you line up with your understanding of your benefits?  Is the HR department helpful to you at all?  Are you able to afford a one-time legal consult to help you sort things out if you feel you're getting the run around?

I would highly urge you to continue taking your treatment meds and not let this "time off" confusion push you into stopping treatment.  You have gotten this far so I urge you to keep going.  Do you have vacation days that you could utilize until your figure things out?  Sick days?

In my own personal situation, I also felt like I couldn't miss work so I didn't.  I didn't have any options available to me because the company I work for doesn't have enough employees to qualify for FMLA and I didn't have private or group disability insurance.  I did, however, accumulate as many sick days and vacation days as I could prior to starting treatment so that I could use them on bad days during treatment.  I do know of a few people who were able to get Soc Security Disability while on HCV treatment but this tends to be a last resort and is not usually easy to get (though it can be easy for some).

Your situation is a good example of why people should get their ducks in a row before they start treatment so that they know exactly what their options are in the event they cannot continue working.  I'm not putting you down at all...just using your unfortunate situation as an example for others who might not realize what a hardship it can be.

Good luck and keep us posted.
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315737_tn?1407302597
I did get my ducks in a row. And I have taken about 25 percent of the time off based on side effects of the medication and a lot of that was paid at a reduced rate by the employer. I have gone through treatment 2 times.  At 1040 hours of disability (approximately 6 months) they turn it over to this outside insurance company.  So I did have a good bit of  time off. When it got to that point where the outside insurance company would be responsible for pay for any additional time disability time off, they started a process of getting a filled out application from me with corroboration of the condition from my doctor through obtaining records.  It was a while after this that I told my doctor I was having too hard of a time maintaining the work schedule. He supported taking off whatever time necessary. I then tried to push this through and when it lingered on and became unclear what would happen, i started cutting down my medication to be able to go to work enough.


The disability insurance company said they couldn't understand the way my employer administrated this because they lumped together time from two separate courses of treatment to arrive and the total of disability already taken.  The insurance company seems not to quite understand the non-contiguous accumulation of the time considered disability.  So after they kept trying to obtain verification of what days I had time off, and claiming my employer wasn't providing them in full, they decided to just fore-go that part and decide whether it is a permanent disability.  That took from approximately March 3rd to now at which point they have told me they have yet to make a determination.

Mike
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Avatar_f_tn
I'm sorry it's been so hard for you to get them to get their determination made for you.  I truly hate to see you have to cut back on your meds but I also understand the financial need to work.  Someone is paying premiums for this disability insurance and yet you have not been able to make use of it, so it's like dangling a carrot in front of a horse...(here it is but you can't have it).

If you haven't already done so, I would start by trying to get a meeting or telephone conference with you, the disability rep and your company rep to get this figured out PDQ, especially to figure out just exactly what it is that they need from you, from the company and/or from the doc.  Be a constant thorn in their side until they get this done.

Good luck!!!



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315737_tn?1407302597
I went through 48 the first time. Doctor decided to do 72 second time around. First time took a couple tests in the become undetected. This round of treatment undetected at first tests and everyone since. Thanks for all your answers.
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184420_tn?1326743408
AMERICA NEEDS UNIVERSAL HEALTH CARE NOW!!!!!!!!!!!!1  PEOPLE SHOULD NOT HAVE TO CHOOSE THEIR JOB OVER THERE HEALTH!!!!!!!
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184420_tn?1326743408
im starting tx in sept and im more afraid of losing my job and health ins halfway thru than side effects from the meds,,,,it is messed up
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