I just lost my insurance and don't know what to do - Please Help!

[Beth35]

So I'm totally freaking out.  I think I am on the verge of having a nervous break down.  I just lost my insurance and I'm getting a bunch of differing advice from people in the SS and Medicare office.

I went on disability in May.  It was considered a leave of absence.  I bought back the time in my pension plan so that I could have ten years in the pension system and do disability retirement so that I could have healthcare for life.  Well my employer kept me on their insurance until I could buy out my time and apply.  I just got notice that my employer had dropped me before I applied and now they are telling me that I cannot apply and get the insurance now because there was a gap.

So I flipped out and called medicare hoping I could be covered.  They told me I had to be collecting SSD for three months and then I would be covered.  That would be Feb. 1st.  So I felt a bit better thinking that is coming up.  I went to the pharmacy and paid and arm and a leg for the prescriptions I needed.

Now I am reading that you have to be on DIALYSIS for three months before receiving medicare.  What am I going to do?  How am I going to pay for my prescriptions or my doctors visits until then?

And I was told I had to have a secondary insurance along with medicare to get another transplant.

I feel like my life is falling apart.  Can anyone help me?  I have NEVER not had insurance in my life and I'm sooooo scared.  Oh and btw, I need to have another surgery b/c my two fistulas failed and I need a graft. 

Any advice would be appreciated.

[rsudock]

good grief employers are DICKS! I just wrote in another thread about insurance and not divulging when you are sick b/c situations like these prove my point. employeers are cut throat jerks that are ready to throw people to the wolves....ok Beth let's come up with a game plan for you....


I believe that needing to collect SSD for 3 months then you will be eligible for medicare is false. After being on dialysis for 3 months you qualify. I have never applied for state disability, started dialysis end of July, and got medicare card in October.  who ever told you that you need to talk to someone else....

also is the company you work for going out of business? If they are not then you will be getting a COBRA letter in the mail. It basically says that you can pay for your own insurance through this employer. The national kidney foundation will help pay your COBRA premiuims for you. My brother has he's paid for up to 2 years.


i hope this helps.... my heart goes out to you. I remember crying about insurance when I was graduating from college and couldn't find a job.

xo,R

[Beth35]

Thanks so much for your feedback.  I did get a Cobra paper in the mail from my employer but I just figured I couldn't afford it.  I will check out the NKF for help.  Thanks.

Can I tell you how frustrating it is to talk to people from medicare and SSA and have them NOT know what they are talking about.  UH!  They give people false information when they of all people should!

[KarenInWA]

Can I just say that this is what I really hate about living here in the US.  My job is more than just a paycheck to me, it is my literal life line. Here in the land of the free, you are not "free" if you are sick and need healthcare.  I am scared for my future and what may happen with healthcare in this country. I am not lucky and am not married to someone who has a great job with great benefits who can take care of me.  However, I am lucky that right now, I am healthy enough to work and support myself, and extremely lucky to have the job with great pay and benefits.  However, if that gets taken from me, I will be up sh!t creek w/o a paddle.  Scary stuff.

KarenInWA

[Desert Dancer]

Beth, have you considered signing up for the Pre-Existing Condition Insurance Plan? I signed up last July and my coverage started August 1st, and that's what's gotten me through everything, including fistula surgery and all my prescriptions.  For my age bracket (43) the premium is only $313 per month (a $74 drop from last year) and my deductible is only $2000 (a drop of $500 from last year).

Here's the link: https://www.pcip.gov/

[Beth35]

I was looking at that but three hundred is a lot of money for me.  Being a teacher, I didn't have to pay for insurance.  I mean, I will if that is my only choice.  When you say your deductable is 2000, does that mean I have to spend that much before they pay anything?  That sounds like a LOT of money.  I never had a deductable before.

Uh, this is so damn scary.  The crappy thing is that I really need bloodwork and a checkup but I can't go without insurance.  I don't have the money to pay for it.  And God forbid when I need to refill my Neoral.  It's about five hundred dollars for one month!!!!  Some of my blood pressure meds are over a hundred dollars a pop.  I just don't have that money.

[Sax-O-Trix]

Do you qualify for Medicaid? 

[Jie]

It sound like Medicaid is the target to shoot from.

[Chris]

I agree, contact your Medicaid office along with Medicare (a real person in an office and on the phone to comfirm). With Medicare, it seems you need to double check, double back, submit more paperwork, get more paperwork before you can get the right answer. Just don't give up, but bring doctor letters, business cards of the doctors (or beter yet a copy of them all on one or two pages). With Medicaid, your not working right? Not working helps you more it seems, but again be prepared with doctor contacts, letters (stating condition, all your medications listed (dosage, times, doctor who prescribed, and why (do same for Medicare also). The more you are prepaired to state your case of medical need the better. Just be aware you may be in a fight/ frustration with Medicare on a month to month basis due to no responce, slow responce, travel to and from the office, the wait (sitting with hacking and coughing people too!)
 
Also know the milage you trave to and from each doctor, lab, hospital visit, therapy, taxi or bus used to get to your doctor if you need to meet a spend down for Medicaid. Even bring that with when you go to Medicaid when applying (the more you have the better from past months.

[cariad]

Beth, I admit I do not really understand how these pension buybacks and state insurance works, but if you were going to get 'insurance for life' wouldn't you just have to buy COBRA for a brief period to fix the gap and then once your retirement through disability went through, you'd be free?

Also, I am familiar with the process of leaving an employer under acrimonious terms. However, could this one have been a mistake? Mistakes happen all the time when it comes to insurance, and it sounds like originally your employer wanted to help you. Should you end up on COBRA, the better relations you have with your employer, the easier your life will be. They cannot withhold anything you have a right to receive, really all they can do is help you at this point, and if you need them, it will go so much more smoothly if you feel you can call someone there in a position of authority. My husband was let go from a job and we sued, but we still had to phone them several times over insurance issues. When I rang up Blue Cross once to discuss our rights under COBRA they said "This is their policy. If they say put you on this insurance, you will be on that insurance." Also, we had HR intervene on a denied claim (in addition to writing scores of letters) and we had our money refunded with interest.

Trust me, you may want to be rid of the place, but there may well come a moment when you could really use their help. I would at least phone to see if you can learn why you were dropped when you were.

[Beth35]

I am on good terms with the HR person from my job.  What happened was I got conflicting information and yes, a mistake was made but it's a HUGE mistake.  Right now there is nothing else that can be done on the HR's side to help me.

Basically I went on disability in May.  I took a medical leave of absence for the rest of the year so that I could buy back the last portion of the school year that I needed to get the required ten years you need to reitre on disability. 

I was told that I had to wait to buy back the time until the time was up.  Then I had to wait to file for retirement until that time was processed. Well it JUST got processed in the system. 

They cut my insurance in December and I got papers in December saying that I needed to get COBRA.  They also say that cut my insurance back to August, which I don't know how they can do that.  Will I be charged now for the things that were initially covered?

Anyway, I had to file for disability retirement while I still had insurance in order to keep it.  Which would technically be true except that they are saying it's been cut since August. 

They JUST sent me the Cobra papers.  There is no way I can afford to pay Cobra all the way back to August.  That would be 4,200 dollars!

I can't get anyone at the pension department to call me back or get me the right answer.  Everyone is telling me something different which is how I got into this mess in the first place. 

[Meinuk]

Yikes.  What a horrible cloud to be under. Take a deep breath.  You are just going to have to plod your way through this.  It is frustrating, soul sucking and not fun at all, but you need to plod through this, and the quicker the better.

First thing.  Health FIRST.  Call your Transplant Social Worker and get emergency/compassionate immunosuppresive coverage in place. Most drug companies have them - you need to ask - usually you can get a month's supply of immunosuppresives on a compassionate basis, while they process your hardship application.  (I know this first hand for Cellcept and Progrf at least).  If you are lucky, your Social Worker may also be able to help you navigate through the insurance maze. If not, here are my thoughts:

Sorry to say it, but I hope that you qualify for emergency medicaid. (see Chis's advice he's a pro) You can check with your state's website for the application process.

Next (or concurrently) you wrote that you are a teacher.  You need to appeal ASAP. Is this a union job?  If it is, you may need to get the Departmet of Labor involved. Just because HR says that they are done, there is always someone above HR.  If this is a Union issue, and it has just happened, you may be in the window of appeals.  If you can't afford COBRA, there may be some Extra Help available in your state (you'll have to work the phones). (I know that NY State has a few drug programs, but this varies GREATLY state to state).

If you start dialysis: There is no three month waiting period (but there is a 30 month coordination period, if applicable [if you have other insurance]), for a person who had Medicare because of ESRD previously but it was terminated after a transplant or recovered kidney function.

Just so you know that you aren't alone in this, as far as mistakes go, I have been through a few.  I screwed up my Medicare B by thinking that someone else would take care of it.  oops. My very expensive bad.  BUT, my job (union insurance) had the nerve to deny my transplant on the grounds that it was not pre-approved (umm, if not, what were all of those tests and transplant clinic visits for over the years?)  I won that fight. (and it was a battle). 

When I left my job (under not very good circumstances - ok, so I got mad and walked out (I have been known to do that on occasion.. what can I say, I am huffy, and well, the steroids DON'T HELP with huffiness) they tried to deny me 6 months disability after my transplant by saying that I was not disabled.  (I had never taken any time off for dialysis, and used my vacation/sick time for my tx recovery - so, in their defense, they were just going on what my very angry dean was telling them) I won that fight.  (which was good, because I had to use that disability money to pay for six months of COBRA after my disability ran out).

Then, my very expensive COBRA ($444/mo) denied paying for my vascular surgery last summer because they decided that they were not primary payer (Someone ticked the wrong box somewhere - and it took six months to correct - the correction was retro active but it still was horrid to live through)  I have never cried so much as when I was fighting that appeal, and it didn't resolve until November.  (I won)

Dealing with insurance has been the worst part of my having CKD.  Hands down.  Just let everyone in your care team know that you are facing this hurdle, and hopefully there will be options for you to get bloodwork at a cheaper rate; Ask for all of the discounts that you can get.  As far as your upcoming surgery, you may already have emergency medicaid in place for that.

Good luck, exhaust ALL of your resources, but take care of yourself first.  There may be a clinic that can help with your BP meds, or another that is cheaper that can bide your time while you navigate this mess.

 

[carol1987]

I have no advice.. but wanted to give you a ....

[thegrammalady]

about medicare, you have to be on dialysis if you are under 65. once you apply there is a 3 month waiting period. apply in january and your medicare becomes effective in april. this waiting period is for everyone not just dialysis patients. dialysis is one of the exceptions to needing to be 65 for medicare.

[rsudock]

beth if you are protected by a union contact the local LRC if your immediate union rep or president cannot help you. the LRC is the state level for the union. especially if their is a breech of contract with your employeer and health insurance....

xo,
R

[Meinuk]

about medicare, you have to be on dialysis if you are under 65. once you apply there is a 3 month waiting period. apply in january and your medicare becomes effective in april. this waiting period is for everyone not just dialysis patients. dialysis is one of the exceptions to needing to be 65 for medicare.

Grammalady, there are a few loopholes to the ESRD entitlement when it comes to medicare coverage.  It isn't that cut and dried.

If you start self care training or PD/Home HD, your medicare can start form DAY ONE of your dialysis. (this was put in to the regs to encourage as many people as possible to use self care and home dialysis)

If you have been a beneficiary and you have a transplant or regain function (after being on dialysis), you do not have the waiting period to start Medicare if you lose function or your transplant fails. (you do still have the 30 month coordination of benefits period if you have other insurance though).

http://www.medicare.gov/Publications/Pubs/pdf/10128.pdf

[Beth35]

Thanks for the info.  I think I make too much for medicaid but not sure.  I will call there today.  The reason for this is that I have private disability and I get SSD for both me AND my kids.  Plus I get an adoption subsidy for them, but I don't know if I have to count that as earnings.

The problem is that I own a house and have a lot of bills.  So while it appears as if I'm bringing in a lot, most of it is going out.

I'll be making a lot of phone calls today.

I just got a call from the NJ pensions.  Now I am getting a THIRD story.  They are saying that I will get insurance but only when I am approved.  So it could take five or six months to get approved and I would be covered all the way BACK to my application date but that doesn't help me now.  Humph!  And who even knows if that lady is correct.  THIS is what messes people up in the first place.

I've had to fill out forms for private disability, SSD, my vehicle disability, my pension disability.  It is freaking exhausting!

[Beth35]

Did I mention that my nephrologist is on maternity leave and I no longer see the transplant clinic for meds or check ups?  My nephrologist took over in that aspect!

There is a doc there covering for her but she doesn't know me.  Can she fill out my forms?

Ahhhhhhhhhhhhhh!

[Meinuk]

The covering neph should have access to your chart/history, and should be able to fill out the forms.  She should want to speak with you about it, but as she is the cover person of record for your neph and I am assuming that there is continuity in office staff.  It should not be much of a hiccup (except for bringing her up to speed on your current situation).

As far as money.  You have an extrodinary medical situation, and you are a mother. PLAY that card. You won't know unless you ask.  Now go forth and WORK THE SYSTEM.  You have earned that right. For right now, you just need a bridge until your pre-arranged benefits are in place.

My thoughts on insurance companies is that they are a lesson in perseverence.  They are banking on you "giving up" and finding other resources to pay for your care.  Hence all of the hurdles.  Make them do their job, and don't take any of this personally.  They are protecting their profit.  I always used to speak with the managers and reps, and say, "I know it isn't you, but how would you feel if you were in my shoes?". I played on their sympathy before I lost my temper (but I did make a Cigna rep cry once as I was yellling at him - karma is gonna get me for that).

Good luck with the phones, I'll be thinking about you.