My new situation. Good or bad?

Treble

New member
Well, I woke up today, insuranceless.

I called a number of places. My old insurance company, the new one my family just got, SS offices, my local medicare offices, etc etc.
All I got was bad news. No one will cover me, or can cover me.
The people at the local medicare offices were very sympathetic atleast. Most of them saying that they had delt with alot of what I have, and tried to help me the best they could. Sadly, nothing can be done.

I tried to get the disabled child form from the insurance company, and they said they wouldn't. They refused to cover me unless I was a full time student in a collage.

So then, my dad calls.
He told me that after talking with the president of the company, he managed to work something out with him for me.
It turns out that the part time job im doing now will become a 40 hour a week, full time job. (meaning my SSDI app is gonna go out the window)

Now, I know, that seems good, right? I'd get coverage again.
The only problem is that, I have trouble handling that little part time job as it is...
Turning it full time like that, im not sure how it'll work out.
If I wind up getting sick with just the part time stuff alone, there's already no one that can cover for me, and I get my job threatened, my dads job threatened, and it makes life a living hell.

It's funny... the little cashier workers can take a "personal" day off to go get
tweaked, but a chronicly ill person in a position higher then the tweaker can't take a sick day without it becoming a nightmare.

If I take this up, and try this, I'll lose my shot as ssi, but I will be eligable for cobra again if I lose the job/insurance.
I'll have to re-start the entire ssi process again though... well paying the 400 a month, without a job.



Yeah, sure, it does seem like a bit of a bind, but.... before this, I had no chance of coverage. I also found out that ultrase is near $3,000 for a months supply (out of pocket).
My only option (which I hadn't tried yet), was calling the ultrase people, and seeing if they could discount it for me due to my situation.
This would still have left me without the ability to see my doctors, or get other meds for infections/nebs.

Should I have quit my part time job, I could have gone for the local welfare, and gotten their mini medicade thing.
It MIGHT have covered some of my perscriptions, but no doctors still.



Well, this is what's going on, and those are my options.
What do you guys think?

Should I be doing something else? is there something I've missed or overlooked?
Do you think I should be going ahead with this job and try? or should I tough it out and wait on SSI?

Thanks in advance for your opinions. ^^
 

Ender

New member
Move to canada. Seriously. You can stay at my house <img src="i/expressions/face-icon-small-tongue.gif" border="0">

All humour aside, there has to be something you can do. What about government plans...or something?

Sorry to hear about your predicament.
 

Treble

New member
Wait, update!
I called the ultrase company, and they said that they could knock the price of my pills down to an amazing *drum roll* 2,500! instead of 3,000! AWESOME!

All I can say to this is, lol.

--------------------------------------------------------------------------------------------

There are currently no assistance or goverment plans I can use until im 21 years old. I'm 20 atm, and my birthday is in november.
 

anonymous

New member
Check out the CHIP plan. People with CF are considered elgible. Just google Chip plan and you can read all about it. Ask your CF clinic if they have a contact person to help you too. You can maybe even contacty CF Foundation for help. But for sure the CHIP plan is for people like us. GOOD LUCK!!!


Jennifer 34 years old with CF and CFRD
 

Tess

New member
I feel for you and have had a Hell of a time with med coverage and all that ...
Hang in there things will turn out right tho it may take a little time ....

Can't you 'work' and try getting ssi given the situation .. probably not ... damn
RED TAPE CRAP...... I'll being thinking of you and i don't think it'd hurt to send up a prayer or two .....


On a second note I say we start some online petitions ... (one in the US another in Canada) and send it to the governments of our nations TO #### off and HELP us ... it's not as if any of us ASKED to be treminally ill from birth.... not sure about any one else but in these types of despare time I feel like such a burden and like it'd be better if I just weren't here ..... Sorry I know we are suposed to be positive but when you hit a brick wall at every turn you just can't help it ......

Sorry I haven't really giving you any answers... your in my thoughts...
 

Ender

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tess</b></i>

I feel for you and have had a Hell of a time with med coverage and all that ...

Hang in there things will turn out right tho it may take a little time ....



Can't you 'work' and try getting ssi given the situation .. probably not ... damn

RED TAPE CRAP...... I'll being thinking of you and i don't think it'd hurt to send up a prayer or two .....





On a second note I say we start some online petitions ... (one in the US another in Canada) and send it to the governments of our nations TO #### off and HELP us ... it's not as if any of us ASKED to be treminally ill from birth.... not sure about any one else but in these types of despare time I feel like such a burden and like it'd be better if I just weren't here ..... Sorry I know we are suposed to be positive but when you hit a brick wall at every turn you just can't help it ......



Sorry I haven't really giving you any answers... your in my thoughts...</end quote></div>

I'm pretty happy with my government. They pretty much cover all my meds...just because i have cf. There are some drugs that they don't cover, but then you can get this government plan which covers everything else. It's pretty amazing...

I love this country.
 

anonymous

New member
Have you looked at the SSA.gov site?

Unless you are making big money, I don't see why you are not eligable for SSI (state Medicaid). Each state has a cap on what you can make - but it also takes into consideration financial hardship when paying for medications (regardless of your income). I have it in my record that regardless of my income (restrictions on assets still apply), I am eligible for Medicaid. Don't ask me which one of my battles landed that in my record, cause I'm not sure, but it can be done.

Medicaid should be paying for all medications and doctors visits, regardless of what state you are in - although it is a secondary insurance, so if you have another insurance program (which you don't), then it would cover whatever that didn't cover.

Is the application you put in for SSI or SSDI? SSDI has an income limit of around $800 and offers Medicare insurance. SSI offers Medicaid.

I would suggest you not take the full time job, as it seems like it will just prolong your problems with insurance and not really fix anything - especially if you don't feel you can handle the work.

In my experience, call, call, and call again about the Medicaid/Medicare programs. You have to be pretty specific about what exactly you want to file for, because regardless of how nice they are to you, their job is to keep new applicants wading in the water (sad, but true).

Keep us updated,

--Wallflower
 

sarabeth87

New member
i need to move to Canada. I'm sure it would be a HUGE change from hickville, Mississippi. i had to drop out of college so i could work full time just so i'd have insurance. i'm not "sick enough" to get ssdi or anything like that. i was on Miss CHIP, but you are no longer eligble once you turn 18 or 19 if you are in school. that really sucks too, bcuz i really wanted to go to college.
 

anonymous

New member
Another idea - not sure if you have or not yet...

Have you talked to someone at your county health department? They can give you info on any state programs that may help you - or talk to the social worker at your CF clinic, they can help you locate resources as well.

I give your dad kudos for trying to help you with the full time job. It can't be easy for him to see you without insurance, AND having to try to pull strings. Sometimes life isn't fair, but I do believe in Karma, and I'll keep my fingers crossed for you.

--Wallflower
 

julie

New member
<div class="FTQUOTE"><begin quote>SSDI has an income limit of around $800 and offers Medicare </end quote></div>

Just to clairify, SSDI does NOT have an income limit, that is SSI, and medicare is offered after 24 months on SSDI.

I'm a bit confused here. Are you still working part time? If so, how much are you making (ballpark figure) each month. I don't understand how you cannot be elgible for medicaid, that just doesn't sound right. Also, you can work and be on SSI, you can only make a certain amount each month from work (somewhere around $500) but it pulls in that extra income. And if you are on SSI, you DO get medicaid automatically.

I'm just trying to make sense of it all as what you seem to be being told is pretty incorrect, unless your PT job has you earning a large hourly wage.

Why are you now off of cobra?
 

Tess

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tess</b></i>



I feel for you and have had a Hell of a time with med coverage and all that ...



Hang in there things will turn out right tho it may take a little time ....







Can't you 'work' and try getting ssi given the situation .. probably not ... damn



RED TAPE CRAP...... I'll being thinking of you and i don't think it'd hurt to send up a prayer or two .....











On a second note I say we start some online petitions ... (one in the US another in Canada) and send it to the governments of our nations TO #### off and HELP us ... it's not as if any of us ASKED to be treminally ill from birth.... not sure about any one else but in these types of despare time I feel like such a burden and like it'd be better if I just weren't here ..... Sorry I know we are suposed to be positive but when you hit a brick wall at every turn you just can't help it ......







Sorry I haven't really giving you any answers... your in my thoughts...</end quote></div>



I'm pretty happy with my government. They pretty much cover all my meds...just because i have cf. There are some drugs that they don't cover, but then you can get this government plan which covers everything else. It's pretty amazing...



I love this country.</end quote></div>








I'm in Canada too and here in NB they don't cover EVERYTHING they did a one time but have decided we didn't need that much coverage ...

Beside my point is not one CFer has ever asked to have CF there for we should not have to be punished Financially for it ... having it is enough ..
 

Treble

New member
Julie, my job pays me around 400-450 every other week, so 800-900 a month, without sick days.
Sadly, im not really allowed to get sick with this job, so I can't even add sick days in there. I struggle with it.

On top of that, the extra hours will come from going down to the local jetro, and bagging/loading products for a few hours a day. That's gonna wear me down fast.

My parents are asking me why I would wanna even consider the welfare, and not try the job. I'm telling them, I've tried three times now to work and be normal. Each time has failed.
Every time I fail, it hurts them. It costs them money, time, and worries them.
The only benifit I'd have from working this is that I could go on cobra agian.

So I work, get sick, lose the job, dad gets in trouble again, I have no income, they pay $460 a month for me for my insurance for near a year, well I put in a fresh application for SSDI, wait for it to fail, then appeal.

Or, I could go on welfare with my current SSDI app, with them atleast covering my ultrase perscription, and wait it out.
(them, being the welfare mini-insurance)
 

anonymous

New member
Sorry Julie, but I was told by SS that for SSDI your income needs to be under $800 before they will accept your application. Once your 'in' then your income can go up. I know you've done a lot with insurance stuff, but so have the rest of us. Regardless it is different for each state, and that is why I recommended that he talk with people directly.

Doing some research on SSI, I came up with this link. Like I said, browse around and hopefully you'll find something to help you out. (Income limit for your state to qualify for SSI is just under $30,000 a year).

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ssa.gov/notices/supplemental-security-income/spotlights/spot-medicaid.htm
">http://www.ssa.gov/notices/sup...hts/spot-medicaid.htm
</a>
--Wallflower
 

anonymous

New member
I'm confused by your reference to welfare mini-insurance. Are you talking about Medicaid? It may be welfare, but it is not mini-insurance - it will cover your needs.

I know it sucks to have to go on government assistance, but it's better than not having anything at all. The bright side is that it will allow you to stay healthy while you work at either this job or another. You may not get the monthly check, but you would still get the Medicaid. Once you get new insurance, the medicaid falls back to secondary insurance, so you still have that coverage if you need it.

The nice thing, is that once you are accepted, if you lose the SSI money, but then lose your job, the money kicks in right away - no having to fill out a new app.

Like I said, browse the SSA web site and back yourself up with some data before you call them again.

--Wallflower
 

thelizardqueen

New member
I'm with you Ender. I love Canada. There's not a drug that I have to pay for out of my own pocket, unless its something like cough syrup or allergy meds, and they only run at about $8 - $20. As long as I have a prescription for it, or my doc has called my pharmacist, I'm set.
 

julie

New member
Wallflower, I think you are confusing SSDI with SSI. If you are speaking of working while on SSDI, then you are right, there is an EARNING limit for the one who is recieving the SSDI if the one recieving it is also working. This EARNING limit does NOT include income from anyone else in the family. Going back and reading it, I guess I found it misleading when you stated that SSDI has an income limit of around $800.

<div class="FTQUOTE"><begin quote>Once your 'in' then your income can go up.</end quote></div> This isn't really accurate either. I've outlined their (SSA) information below.

<div class="FTQUOTE"><begin quote>Regardless it is different for each state</end quote></div> SSDI benefits are administered by the federal govermnent and do NOT differ by state. SSI monetary benefits vary in some states because the check is supplemented with other benefits (most often food) but everything else is the same. I'm not trying to insult you or anything, it seems that you are taking it personally. It's just that I wanted the person to recieve the correct information, or at least clairify it, which I have done below.

If you are on SSDI and working, you get a 9 month trial work period during which you can still recieve your full SSDI benefits regardless of how much you earn as long as you report your work and continue to have a disabling impairment. THis trial work period continues until you accumulate nine months of work in which you perform "SERVICES". They consider work to be "SERVICES" if you make more than $620 a month. So, if you make under that amount, you have nothing to worry about.
After the trial work period ends, they will stop you benefits for months that one's earnings are at a level considered "SUBSTANTIAL". In 2006 that amount is $860 or more each month. (<a target=_blank class=ftalternatingbarlinklarge href="http://ssa-custhelp.ssa.gov/cgi-bin/ssa.cfg/php/enduser/std_adp.php?p_faqid=317)
">http://ssa-custhelp.ssa.gov/cg..._adp.php?p_faqid=317)
</a>
 

Treble

New member
I just got off the phone with the SS office... again. They said that with my current job, there's no chance im getting accepted.

Here are my new choices.

- Withdraw my application for SSDI, apply directly to medicare, and then later apply for SSDI.(only if the medicare office will allow it)
- Get fired from this job (they wanna fire me badly), inform the SS offices of it, have my doctor write them a letter, telling them things specificly, and get on welfare to cover my ultrase (if they do). Then wait it out from there.
 

littledebbie

New member
Could you look for a different job that would be less taxing on you?<br><br>
if you weren't working would you qualify for SSDI? And if so would it be enough for you to live on? (do you have enough work credits etc.?)
<br><br>Can you slide by a few months without insurance durring the application period? (do you have a backstock of meds?)<br><br>If I understand correctly...Julie feel free to jump in... You could quit your job and apply for SSDI if you have enough credits and then once you are approved you would have some $ and insurance and you could pick up some small job to add a little more $ not to exceed about $650 or so a month. But in between quiting your job and being approved for SSDI you would probably be up an insurance creek so you would probably want to try to stock pile some meds before you quit and then hold your breath you don't need to go to the ER for any reason.<br><br>Man I love life with CF! <img src=""> ...could you FEEL the sarcasm that time, i mean I think i delivered the cup of sarcasm for the day rather nicely that time.
 

Treble

New member
That's what im doin.
I have all the ultrase they'll let me get. (about a month and a half worth)

I'm lookin into the welfare tomorrow once they're open, to see if they'll cover my basic meds.
If so, im goin on it.
 

NoExcuses

New member
I want to throw my never-to-be-humble opinion in the ring here.

And let me preface my statement by saying that I have nothing AGAINST said countries or citizens of said countries.... I am speaking on a macro level.

I want to present the other side of the cost equation. I know people are stating how wonderful it is in Canada (and Europe) that they have little or no out of pocket for drug expenses.

But let's take a look at what might happen if price controls and socialized medicine were to occure in the US.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/Home/HomePageBottomSection/RecentCFNews/770_Phase1_FINAL_PR3.doc.pdf">http://www.cff.org/UploadedFil...ase1_FINAL_PR3.doc.pdf</a>

Let's take a look at Vertex - the comapny that the CF Foundation decided to give money to to develop a promising compound to treat CF.

First and foremost, why is Vertex agreeing to do research on a CF drug? Because the CF Foundation is giving them over $40 million to develop the drug. So it's that much less cost that Vertex will have to develop the drug. Additionally, if testing keeps going well, the CFF will provide more money to support clinical trials.

All in all,

-Vertex will spend much less developing a CF drug than developing drugs for other diseases.

-Additionally, the time that it will take to get the drug to market wil be less because the FDA will fast-track the drug.

-Finally, Vertex will get a longer patent life on the drug than it would for a non-orphan drug

-Ultimately, Vertex will make as much if not more developing a CF drug than it would developing a drug for another disease state.


Now that we have the background under control, let's take a look at post-marketing. Vertex will sell in Canada, Australia and Europe and make little if any money there. But that's OK, because the US has no price controls and Vertex can re-coup the R&D costs that it had (that the CFF didn't cover).

Now, what would happen if the US had price controls? Would Vertex be able to re-coup costs? To be fare, maybe, maybe not. What we can say, for sure, is that Vertex certainly wouldn't be able to make as much money with its CF drug if the US had price controls like the rest of the world than if the US didn't have price controls.

So let's go back to where CFF approaches Vertex and says "hey, we'll supplement about 1/3 of your R&D costs to develop a new CF drug." And Vertex thinks to itself "well, I am a for-profit organization. And just like Dell, or Disney or GM, I need to gain a return on my investment. Will I get a return on investment as good if not better than I would developing a drug for another disease?" The answer, for Vertex, is more likely to be YES if price controls didn't exist in the US than if there were price controls.

Does this solve the problem of poor Treble who needs meds and doc visits costs covered? No. But it does put into perspective how much HOPE we all as CFers can have for the future if the US continues to foster pharmaceutical R&D rather than go socialist and implement universal health coverage and price controls.

No incentive to make $$$ = no new drugs for CF patients. It's as simple as that.
 
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