sarcoid took over and insurance dropped me

By wendyb
Posted July 20, 2008 at 8:25 pm · 22 replies
In Living with sarcoidosis

back in 2004 i got sick with pneumonia and was admitted into the hospital, while i was in there they ran every test they could think of, my chest x-rays came back shadowed couldnt even see my lungs. so they said they wanted to do a biopsy and poof it was sarcoid. after 6 months went by i startd fighting woth insurance, madicaid at that, they told me it was costing them to much money and besides that 3/4 of respitory wasnt covered anyways so they dropped me, well i have so many issues now since sarcoid that i am unable to work anymore, i have gone with out insurance for years now, the only time i get my meds is if i goto the emergency room. does anyone have any suggestions for me on how to get meds to control this crap

22 replies

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Newest first

By alifay
Posted July 20, 2008 at 10:15 pm

Try needymeds.com. Also go to the Montel williams site there is a link on there for people that doesn't have drug coverage. Also try going to some of the drug companys web site. What about in the area where you live are there any clinics?
Good luck. Let us know.
I have drug coverage and I'm still paying out about 500. a month and I haven't worked in two years, but I don't quailfy for anything because my husband carrys tha insurance I'm just so thankful for what we got.

By Patrick1
Posted July 21, 2008 at 12:20 am

Try to contact your local RSVP(retired senior volunteer program) this is who I turned to prior to being accepted into Iowa Cares Program. This is through a state college you may want to check into that yourself I have to travel 120 miles for doctors appts but the college covers almost all meds and apts.

By nickmd
Posted July 21, 2008 at 12:49 am

The richest country in the world and the insurance companies are allowed to do this. 45million americans without health insurance. Number 20 of the develoved countries in infant mortality. Thank the Republican lackies of the insurance industry for these benefits. By the way, the Administrative costs for private insurance companies averages 35%!! Medicare (yes the U.S. government agency, has administrative costs of 5%!!) Sorry but some things the government can do better. Like run the army and social security and yes health care.
We hear here that the Canadian system is bad. However when the Canadians are polled, they are much happier overall with their health care than we are.
We could cure sarcoidosis if we didn't have to give the CEO of United Health Care a $2,000,000,000.00 (that is 2 BILLION BUCKS) salary. The other health care mananagers take more money than they give the hospitals. Something is rotten and it is not in Denmark!!!!!!!!!!!!!!!!
Nick M.D.

By priscurl
Posted July 21, 2008 at 3:26 am

Hi Nick M.D.

As an Australian, I am sure glad I don't live in the good ole USA with sarcoid.
The former Australian Government tried to send us down the road of US health insurance, but thank goodness the Australian people saw it coming, and threw the government out at the last election.
I read some horror stories on this site about health insurance and disability and I thank the Lord, I am not a US citizen. My heart goes out to you guys. I have to say, none of it surprises me. I have seen some documentaries about Iraq, Halliburton, the Bush/Cheyne administration things don't look too good. In fact, they are stinking!
No offence meant to the people of America, who just happen to live there.

Pris

By micheleb
Posted July 21, 2008 at 11:44 am

I live in the US and I agree with the above opinions!! I make about $33,000 a year and pay $984 just for my health insurance PREMIUM, thats per month, every month!!!! Add in my copays for doctors and drugs and that's another $400-600 a month. Its just WRONG.

How can Medcaid deny you?? I thought they had to cover anyone under a certain income level?? You were provided some good suggestions above as well. Also, check with your doctor, they may know of a drug program to get you into. Check with the large universities and search the Internet for drug studies, maybe you can get into a trial study. Have you applied for social security disability? I think if you can get that, then you would qualify for at least Medicare.

No one should go untreated just because they can not afford it.

By wendyb
Posted July 21, 2008 at 2:33 pm

thanx ya'll for the replies, i have been through ssi and ssd,, here they do not recognize sarcoid very well, and as far as medicaid, they beleive that i am still able to work and if you are not what they are looking for they don't help. i will explore the internet and the montel williams thing

By sculptr
Posted July 21, 2008 at 3:01 pm

Umm, Nick, that's more like $324,000 from 2000-2005. Not sure of the current figures but I don't think he got a billion dollar raise in a couple years. Still excessive, I agree, but a long way from billions.

Cheers, Michele C

By Jackie7
Posted July 21, 2008 at 3:10 pm

Dear Wendyb,

I'm so sorry to hear of your predicament! I too was without medical insurance for the last ten years. It was just this last year that my husband was able to get insurance. He is a contractor and the premiums are about $900 a month with copays and a $1,000 dollar deductible not included. We are also in debt to the tune of about $80,000 plus other personal issues I can't discuss. This disease and life in general seems to just dump on so many of us.

I wish I had something wonderful to help you out but I don't. I will gladly say prayers for you and send some good vibes your way. You are not alone and I hope the advice posted above helps you out and takes away the stress in your life.

Jackie7

By dlwellz
Posted July 21, 2008 at 3:38 pm

At this time nearing an election, again we think about universal health care. I have Blue Cross/Blue Shield and Medicare and still spend several thousands out of pocket each year.
When I hear the outcries about socialized medicine and "HillaryCare," I cringe and wonder how the Christian Right Republicans can support denying care to people. A recent PBS documentary compared several countries with longer lifespans, better health care, and lower costs than the US. My response to critics is that these countries must be doing something right. Why can't we do it too and even improve on it?

By yankeefan
Posted July 21, 2008 at 5:15 pm

I am in the same boat as dlwellzn blue cross/blue shield yet at least a couple of grand a year in medical bills. Plus I missed so much work last year that my boss asked me at my review what my diagnosis was and if I will need to go out on disability. I have to work as long as I can keep it up. I am already out of sick time and it is only July.

By neal
Posted July 21, 2008 at 6:20 pm

i thought this was a sarc site and not the daily talking points of the socialist left.

and for nickmd - nobody makes 2b a year in salary.
that is just ridiculous.

lets talk sarcoidosis not political points, especially for the oversea people who have no clue except what the left leaning media tells them.

By neal
Posted July 21, 2008 at 6:21 pm

Wendy,
I don't know how to help you but my experience with US medical coverage has been fantastic.

By nickmd
Posted July 21, 2008 at 7:01 pm

Oh Yeah, Neal & sculptr. Only 1.7+billion dollars, gee I am so sorry I indulged in hyperbole. I guess you think 1.7 billion is a long way from 2 billion??Poor Bill McGuire may not make it on that little money . And he is going to get 5 million+ a year plus undisclosed benefits for life. $1,700,000,000.00+!!; where I am from that is a lot of money. My numbers by the way are from the last 10 years of United Health's 10k annual reports to the securities and exchange commission. Where did you get your numbers?? "Outgoing United Health Group Inc. CEO William McGuire's compensation — more than $500 million since 1992 in addition to the pending severance, a $1.1 billion farewell package, his employment agreement also provides for a lump-sum payout of $6.4 million when he leaves the company and an annual pension of $5.09 million, according to the 2006 proxy statement." in case you don't want to search the records the quote is from the Houston Times.
& that is just one insurance executive's package.
A lot of Sarcoid research could have been done with the bucks these pigs at the trough are spending to buy multiple mansions and private jets. my point is not Bill's pay but the excesses that are occuring in the health care industry while these guys are trying to pull the wool over your eyes to make you think you are getting the world's finest care.

By wendyb
Posted July 22, 2008 at 1:53 pm

thanx ya'll i am fighting to get on medicaid and county insurance but it is still hard to do, i live i tampa fl. for all ya'll who is from a different country.. i am not here to talk politics i am here to talk about sarcoid which has taken over my life now in end stages of 3 working on 4

By neal
Posted July 22, 2008 at 2:44 pm

Sorry Wendy. I hope you succeed in getting the coverage you need. So many people are rewarded with coverage just by coming to this country and many of the people who have paid to support medicaid, and finally need it, get the run around. There are many problems everywhere in the world and this is one of them.
I just get tired of all the people bashing our great country and, even though I'm a conservative but not a Bush fan, blaming 'a' president for congress's lack of action. Congress has been pretty evenly split for many years so both sides of the aisle are to blame.
Too bad ideology doesn't fix problems. I guess only actions do.
Take Care,
Neal

By Paradox
Posted July 23, 2008 at 12:21 am

Wendy,

It's a tough spot that you're in and a growing problem. A few thoughts that I came up with though...

Many medical schools host free community clinics and have access to resources beyond themselves. Many community clinics will work on sliding fees and also can help get people enrolled into some form of resource program. Some are even lucky enough to have social workers who contribute time to help people find resources they are eligible for as well as fill out the needed paperwork and jump through whatever other hoops and overcome the obstacles that are piled in the way.

You might also look for community service groups such as the Kiwanis, Lions club and even the Salvation Army - all of three of these groups have hosted free clinics around the country at times and might have additional resources. I know when I volunteered at one such clinic I found that the host had a fund to pay for some types of prescriptions for patients of that clinic on an as needed basis.

neal
For someone that doesn't want to hear others talk about their politics on this site you are sure bringing your ideaology up a lot. Please don't or I might have to switch gears and bring mine to bear - trust me, none of you really want that especially when it comes to issues surrounding health care. All I will say is that useless terms like right and left are wholly subjective and where someone else stands is based completely on where you are sitting. I don't know why most Americans just don't get that. In any event, please, spare me both the so-called "leftist" and the quite obvious "rightist" sound-bytes - they do nothing to help, are meant to hurt and actually share no resemblance to the truth of the issues.

By snappykappy
Posted July 23, 2008 at 1:31 pm

amen to that paradox

it is a disease which almost anyone can get in their life and not even know unless something comes up like loss of wt and not knowing why and when it started which is what happened to me

so i went to the dr and this is how i found out that i came out of remission because i believe once we get something like this we will always have it and just hope it goes into remission

by the way i spoke with skip storch who was up for an espy and am in contact with him and only spoke with him about 15 total the two times and he has sarcoid and he got to speak with people at the awards ceremony and informed them about sarcoid

so skip and i are working on some things to get the word out to people about this disease

maybe this is why i am still around and why God has a plan for me

By quincycat
Posted July 23, 2008 at 9:33 pm

Going back to the top of the thread...

Alifay makes a good point about most drug companies making medicines available for those below a certain income level. You can check the specific medicines at https://www.pparx.org/SelectMedication.php

By Paradox
Posted July 23, 2008 at 11:22 pm

Oh, and I might also add that prednisone is among the cheap medicines out there. Yes, I know it has a bad reputation, but it is still a mainstay of treatment because it is rather effective.
I'm sure it must be on a few of the $4 prescription plans that many grocery stores are offering these days.

By Armand
Posted July 24, 2008 at 10:33 pm

Who are your doctors and are you trying to work with the iniversity of fla, or shabds in gainesville. I know that would be a long drive but might be worth it. finally get in touch with NIH they have a research program going on or about to and a second one coming up. I talked to them last week. Fla has strange rules and interpertation about SSI I can't explain and fighting the government is always difficult and time consuming hope this helps stay hard and be glad about every day you can get up and see the sunset
armand

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