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» LymeNet Flash » Questions and Discussion » General Support » Insurance coverage

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Author Topic: Insurance coverage
katrinab
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I have always been on Medicaid, but since being on I.v abx my doctor has told me he has never seen anyone able to get approval for abx for more than one month. I feel that I need more than one month of I.v abx so I just wanted to ask people if this seems to be true with Medicaid? And if so, what health insurance plan offers really food coverage for Lyme patients?
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WhitneyS
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You will need more than 30 days of IV if you havent caught it early.

I dont know about medicaid...sorry.

As for other insurance, if you dont already have it then you probably wont be able to get covered since you now have a preexisting condition...maybe check and see if your state has a pre-existing condition insurance pool.

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shannon12
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My second appeal from bcbs of nj was just denied. Before July I had aetna hmo and they paid for everything, the picc line to be put in w/small copay, and months of iv's and all orals. Then my work switch insurances.
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Keebler
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Medicaid is state administered.

In Massachusetts, they are no more likely to allow more than 30 days than in other states, though, as they take their guidance from the IDSA guidelines.

When I considered this in another state, I was told 30 days would be the maximum time.

Do connect with your state and local lyme support groups to see how others fared with IV.

At one time, I had donated to me IV Rocephin. But I had no was to afford the PICC line to be put in or maintained.

Had I used the donated Rx for the IV, no IV clinic in my city would touch me, or help me. I would have had to use THEIR Rx, not bring my own, even if it came directly from the drug company to them, marked for me.

Neither Medicare nor Medicaid could work with this - but, still, had they - it would have been a 30 day max.

I had considered whether, once I got the PICC line in, if I could have taken care of myself around all this, doing it at home and not required any help. I did not think I could do that.

One person suggested that with each dose, I just put in a new IV line and avoid a PICC line. I found that to be daunting.

Still, do talk with others who may have found some ways to work around this.

Best of luck.
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beaches
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Paid thousands out of pocket for IVs for my kid despite the fact that we were already paying mega-bucks monthly for private insurance.

Yeah, the insurance co covered the first month as most do. With all that we pay out of pocket every month for meds, supplements, doc visits I can't help but wonder if we'd be better off ourselves to just stop working and paying into an insurance system that refuses to reimburse us.

I don't begrudge anyone on medicaid because I am sure the vast majority are on it because they've had no choice. But I can't help but think there are some who are just out there to take whatever advantage of the system they can.

And what of the rest of us who pay through the nose for insurance not to mention taxes? And yet many of us get basically the same care/result as those on medicaid.

I know I am politically incorrect and I will make no apologies for that. It just burns my a$$ that we pay so much monthly for medical insurance only to pay so much more out of pocket.

And now we "rich folk" who have struggled to pay out of pocket medical bills for years are expected to subsidize others more than we do already?

I don't think so and I'm not even a Republican.

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katrinab
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If I switch to a private insurance, won't I be denied iv treatment because my lyme would be called a preexisting condition? There is a doctor I see here in mass, who documents his research on chronic Lyme. He has never been threatened by insurance companies or the medical board. He is an infectious disease doc. Perhaps because of his medical background, he may be able to get me more than one month of I.v. Anyone who is from mass andy knows my doc and has experience with this, feel free to let me know if I'm right about this here or in a pm.

I m going to be moving to Washington, but if I have to pay thousands for I.v. Every month because Medicaid won't cover it in d.c., then perhaps I should just keep my residential address in Massachusetts and go back and forth between mass and d.c. And see this doctor. If anyone knows if this could work, please let me know. The only thing I can think of that might ruin the idea is I don t know if the I.v. drugs could be delivered to me in d.c. or if I would have to constantly pick them up in Mass. I already have the picc line in my arm so I don't have to think about that part of it.

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WhitneyS
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What I was saying is that you wont be able to get private insurance, they wont even cover you due to your preexisting condition.

So IV or not, I would be surprised if you were able to get any coverage. But I guess you could give it a shot.

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Bluesfatique
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I have been really shocked by the amount of my co-pays for one month IV. Once I started private pay it was cheaper than the copay! I don't understand it and still trying to figure it out., the infusion center has collected thousands from my insurance. Very troubling. Re pre-existing condition, doesn't the new health care law protect you from being turned down for that?
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peonyprincess
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Blues, that part of the AHCA does not kick in until 2014 when it will no longer be legal to deny anyone with a pre-existing condition.

**edited political comment**

[ 10-01-2012, 08:17 PM: Message edited by: Lymetoo ]

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Lymetoo
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Even if you do not have a pre-existing condition, insurance STILL will NOT pay for more than one month of IV.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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beaches,

I assure you no one WANTS to be on medicaid.

You say that "can't help but think there are some who are just out there to take whatever advantage of the system they can." (end quote)

and "And now we "rich folk" who have struggled to pay out of pocket medical bills for years are expected to subsidize others more than we do already? (end quote)

--------------------
First of all, at least in my state, medicaid covers NOTHING. Absolutely nothing, especially since no doctors will recognize lyme.

And most doctors will not accept medicaid patients (and many won't even take Medicare patients anymore).

And, as for taking advantage of the system, that's what most think of ALL lyme patients. Most out there thing ALL who think they have chronic lyme are just lazy and malingering.

Anytime we are angry about someone getting something for free, it's often just not the case. We don't have the full detail of all they've lost, all the roadblocks, all the variables.

I seriously doubt there is anyone out there to take advantage of Medicaid. It's so demeaning in so many ways and really offers so very little of substance.

Now, I can see being angry over the cost of health care. Sure. But healthcare and Medicaid is not the same thing at all in most states. Not even close.

As for those like you who are expected to subsidize the losers like myself, well, I used to be a tax-paying, wage earner. I tried. And tried. My health failed and the doctors failed to helped when I did pay for my own insurance.

I got fired from professional jobs due to inability to function - and then from all kinds of retail jobs because I could not even manage those. Keep passing out being on my feet all day.

I did not choose to be a loser who relies on Medicare & Medicaid. Not at all. And my guess is that no one does.

I feel that I need to speak up for all those who are thought of as moochers & losers. I'm sure there are reasons for anyone being on medicaid.

But, in the past 3 years, I've not had one single doctor appointment, as the expertise is just not there. I also can't go out at all. So, being home bound, I'm saving you lots of money for care that has never really there to begin with.
-

[ 10-01-2012, 09:00 PM: Message edited by: Keebler ]

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katrinab
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Well beaches, I don't think it was helpful for me to go off on a political tangent though I understand your frustration with the system. Keebler, I do t know if beaches was talking about Lyme patients in particular. I didn't take it that way. I don't personally think lyme patients are out there to mooch off the system. Most of us can barely work, it's not like a lot of us can afford to pay for private Insurance anyways. However, Keebler I have to say I disagree about other moochers out there that don't have Lyme. I work in a cash business, and I don't work often enough to afford private insurance and I also have a job where me saving now and investing my money greatly Impacts my future. I cannot afford to pay for private insurance and I dont think private insurance would give me any better treatment than Medicaid, i honestly think it would be worse.

But I do see people at my job working seventy hrs a week and on food stamps, Medicaid, and any other aid they can get and also paying very little in taxes compared to what they make. But anyways, let's get back on track to what this threads as about. I am in a tough situation where I need I.v. It could cost me my life if I don't get it since I was not tolerating oral abx. If anyone has any helpful info, I'd greatly appreciate it. Let's save the politics for another thread.

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beaches
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I just posted a reply to Keebler here but apparently it didn't go through.

Too bad because I poured my heart into it. I will get back here again shortly. Suffice it say, Keebler and Katrina, I apologize if either of you took offense to my post as it was NOT at all directed towards either one of you.

And Keebler especially, just please know that I feel very badly that you were affected to such an extent from my post. I offered an explanation and stated that we have more in common than we have differences.

I don't know what happened to my post. But please keep avenues of communication open with me via PM.

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beaches
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Keebler, I personally know someone who would and who has taken ``the system'' for all it's worth. People like this will also take people for all they're worth too. Hard to stomach, but there are people like this in the world.

Have you been to an ER in a border state? I was told by nurses at one ER that there that people routinely come over the border to have their babies. Who do you think pays for that? Who do you think pays for the healthcare of those kids? Who do you think pays for their education?

I am sure you know about mothers on welfare who have more children than they can afford. Who do you think is paying for her healthcare as she is pregnant with her 5th kid? Who pays for their food, their rent, their healthcare, their education?

WE DO!

When I was in college there was a girl who was getting all kinds of student aid-- she actually ended up having money to spare after all was said and done. So she got her education for nothing and gained a few bucks in addition to that. I knew her and knew that she was not in dire straits whatsoever. She wore a fur coat! Yes, real FUR! Her family scammed the system. And no doubt this still happens today.

When I said ``rich folk'' I was being sarcastic. Lately it seems that when parents are able to pay the bills (sometimes barely), don't complain to anyone, are able to keep a roof over their kids' heads, food in their bellies and able to somehow still manage to pay outrageous medical bills, despite paying for private insurance, ``we'' are considered ``rich'' and somehow ``owe'' people who have never even tried to pay into the system. I have witnessed such a great sense of entitlement amongst so many groups and now I see it in our young people. This disgusts me to a degree that I can't even explain. And I wonder how the hell we could afford to pay more than we already do.

And just so you know, I fully understand the losses and roadblocks of living with this awful disease. My family has been through sheer hell. This disease is a living nightmare.

I don't like the fact that you used the word ``loser'' to describe yourself. You are so far from that. Has it dawned on you the magnitude to which you help people here? You have found a calling. I wish you'd write a book.

If I could direct where our tax dollars go, I'd send them straight to people who have been afflicted with this awful disease.

I completely understand working and trying so very hard and ultimately getting fired due to health reasons (now we all know better and that would certainly be grounds for a lawsuit).

Keebler, like I said, the vast majority of people are on Medicaid because they have no choice. I certainly do not think of people who rely on Medicaid and Medicare are moochers or losers. But I KNOW that there are people out there who will take advantage of anything and anyone.

It is a disgrace that you have not seen a doctor in 3 years. I understand the expertise isn't there when insurance is limited. But, even seeing the LLMDs we've seen, I want to smack my head against the wall sometimes.

To pay so much money out of pocket for so long and still have one kid who just cannot seem to get well is inordinately frustrating. And I think that in part is why I feel what's even the point of paying into private insurance, which covers so little to begin with. I honestly don't see a big difference in outcome having taken her to so many docs and tried so many things vs. doing plain nothing. And then to have a bill from Quest for over $900 that wasn't covered and another one from Stonybrook for over $400 that wasn't covered either. And none of those lab results told me anything new or were useful in determining a new course of action.

Katrina, no I was not talking about Lyme patients at all and thank you for realizing that. It would be easy to take it that way though, since we're on a Lyme board. There is a lot of pain, heartache and financial troubles that people here are going through. I understand it because we live it. I totally agree with you regarding your observation of other people and how they take full advantage of the system.

But back to the topic at hand--if I were in your shoes, I'd call every infusion company I could find and explain your situation to them. I would ask if there was any way they could help you. And just so you know, IV might not be the be-all end-all. You might have to do an herbal protocol at some point, treat parasites, candida, etc. if you haven't already. Best of luck and health to you.

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lax mom
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katrina: you are receiving Medicaid for a reason, I would save the money you would spend on another insurance policy and use it towards treatment expenses. I could never afford IV, but I now get IM Bicillin and it's covered by my RX plan.

[ 10-02-2012, 09:43 PM: Message edited by: lax mom ]

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SouthPaw
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katrina and whitney, not all insurers deny coverage for pre-exisitng conditions. The majority don't, but unfortunately too many suffer the consequences of those who do.

It's really on your employer and individual state laws. Your employer decides what coverage to purchase. The less they want to pay, the less coverage you get, including pre-existing conditions limitations. I haven't had a plan in thirty years that didn't cover pre-exisitng conditions but I've been lucky (and paid through the nose). I've been covered by BC/BS Mass, Anthem BC/BS, Aetna, Harvard-Pilgrim, and think I had Prudential at one point.

Some states also ban pre-existing limitations. For example, Mass banned pre-existing restrictions in 1993 (might have changed when MA implemented universal health care, I left in 2002). I think NH banned it too.

katrina, this doesn't help you since you're on medicaid but want to urge others to get details of their coverage before losing hope about a pre-existing condition.

whitney....you're in Cali. I lived there and my wife grew up in LA. I lived in seven states and have to say Cali health care is a lost cause. MediCal is useless and Kaiser is a joke. At least that was my experience.
.......
Lyme treatment has its own problems separate from pre-existing conditions though. They're often intertwined but different battles.
****
katrina, lyme patients just took another blow to the head. I can't speak for Medicaid but most (if not all) insurance plans only cover 1 month for Lyme. Until two weeks ago many would cover longer if you had coinfections (sort of a loophole). I just found out today that Aetna, BC/BS, and I think Harvard-Pilgrim just redefined coverage and now lump coinfections in with Lyme and only cover 1 month for cos. I just finished my first month, was originally told I'd be covered longer for cos but got told today I need to pay out of pocket to get my IV for tomorrow. Not a good situation.

I'm not sure if that's nationwide, BC/BS isn't a single company so can't speak for all states. BC/BS-Mass is independent but I fall under Anthem BC/BS which covers 8 or 9 states I believe.

It's a struggle. Another alternative is to see a naturopath, they don't cost as much as traditional LLMD's and can offer solutions that MD's refuse to talk about (i.e diet, vitamins) that help recovery. MD's just say "take vitamins", a naturopath will help you know what to take. A good alternative if you can't pay for IV meds.

There's a thread I read here not too long ago about different sources of IV rocephin that were less expensive. If anybody has the link it might help.....or do a search. Sorry, I didn't save the link.

Good luck.

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AuntyLynn
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The Affordable Health Care Act has enacted the part of the law that says CHILDREN cannot be denied insurance for pre-existing conditions. The rest of us won't get that guarantee until 2013 or 2014.

As for complaining about people who "milk" the welfare system ... why not report them if you know about them? I am certain there are some folks who are bona fide welfare cheats (the Obama administration has tracked down thousands of them in the past 3 years) ...

But the majority who apply are just former hard-working citizens who are "down on their luck." And frankly ... there but for the Grace of God, go you or I.

Fact is, the REAL problem with Lyme is the IDSA treatment protocol, and the ability of insurers to claim that "long term IV" is "outside the standard of care." Instead of attacking those who are simply trying to preserve their lives - let's go after the REAL culprits, who are the PROFITEERS in the Insurance Industry!

BTW, Massachusetts enacted a "doctor protection law" in June of 2010: which states that no one can prosecute a doc for recommending more than FOUR WEEKS of antibiotics to a Lyme patient. This may be the reason why some in Mass. get coverage for IV, without hassle. Similar bills were passed in New Hampshire and Connecticut.

I understand that Rhode Island enacted a law that forces insurers to PAY for IV to treat Lyme. So until we can get every state on the same page, attacking each other like jealous children, does no one any good.

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beaches
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It's great that children will not be denied coverage for pre-existing conditions. This is a good thing, but for kids with Lyme, for whom the vast majority of expenses aren't covered to begin with, I don't see a need for going all out with celebratory fireworks.

Yeah, AuntyLynn, I get the "there for the grace of God go I." That's something I've said to myself and others for decades, despite hardships in my own family. We count our blessings--always have and always will, despite the hell that we have endured.

I will remind you that I originally stated that the vast majority of people on medicaid had no choice but to go on it. For sure, the main problem is the IDSA running the show in terms of treatment under their "standard of care."

I am glad to hear about the RI law--I was not aware of this until now.

As you said, for sure there are bonafide welfare cheats. I could report my acquaintance but do you think for a minute it would make even remotely a dent in such a broken system?

Maybe I should just plop myself down there in a border state so I can obtain identifying information from those coming in to our country so that they can pay their fair share of expenses and taxes.

Or maybe I should just go visit welfare moms around the country who are depending on the regular Joes who pay through the nose in taxes so they can pop out another kid, to ask them when enough is enough.

I can't do that because those ideas are much too politically incorrect. How dare I have the audacity to want an explanation/answers as to how my family's hard-earned tax dollars are being used and wanting justification for same.

ESPECIALLY in light of the fact that the money we have paid for private insurance has barely covered what we have paid out of pocket for Lyme Disease treatment.

I hope you are not referring to me when you use a phrase like "attacking each other like jealous children" as I do believe I have expressed my opinions in such a way that could NOT be construed as attacking anyone. And frankly, I don't see any evidence of anyone attacking anyone else on this thread.

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katrinab
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Beaches, please stop your posturing. If someone is attacking you, who cares? It's not that big of a deal. I understand where you were coming from and accepted your explanation but I've already told you I don't want my thread hijacked for political discussions. Since you seem to think explaining your political views is more important than me getting my I.v.and saving my life, please discuss your political opinions in the " off topic" discussion.

Everyone else, thank you for your help and time, I greatly appreciate it. Want to get this topic back on track. Does anyone think moving to Washington, virginia, or Maryland is a totally bad idea if I want to continue I.v. Treatment? I asked this question in seeking a doctor forum, but dont know if that was the right place. I'm guessing Virginia would be the best state, but still, Massachusetts has the new law where doctors can treat however they want.

I'm guessing that makes it possible to get more than one month of I.v. Here? Depending on what type of doctor you are. I'm guessing a infectious disease doc would be able to make this happen more so than a general practitioner that has taken on treating Lyme. should I just stay in Massachusetts, or does it not matter? My fiance may be able to extend his Bc/Bs Insurance on to me but I dont know if they would refuse to treat my Lyme, claiming its a" preexisting condition" and if their coverage is even that good for I.v. Abx. Anyone with answers, I'm waiting

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lax mom
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katrina: Have you checked into Medicaid eligibility criteria in the other states to make sure you would even qualify? I thought Mass. had universal healthcare that the other states don't.

**edited to delete unhelpful comments**

[ 10-04-2012, 02:30 PM: Message edited by: lax mom ]

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sammy
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Katrina, you may not be getting many responses because each individual insurance plan is so different. We cannot venture to guess what will be covered for you if you choose to purchase a plan.

I wish I could tell you that if you purchased the best, most expensive plan available that it would cover your IV's antibiotics.

Sadly, because of my pre-existing medical condition the only plan available for me is the "best and most expensive" in my area. This is the only one that I qualify for. I had this plan through my work for several years, then COBRA, then rolled it over into an individual plan. It costs a scary amount per month.

Despite it's scary sad cost, it only covers generic medications and absolutely no injectables. No IV's.

In my state, you're pretty lucky if you can get on Medicaid. The counties are so backed up that when you apply it takes over a year for them to review your applications for assistance...

katrinab, you are lucky to be receiving state assistance if you do truly qualify.

You mentioned the possibility of having your boyfriend try to put you on his BC/BS plan. That would be excellent. Get him to start working on that now to see if it is possible.

I was on BC/BS and they would only pay for 4wks of IV. You may be able to work around this though and get them to pay for the vials of medicine through the pharmacy benefits. Then you would only have to pay for the saline bags to reconstitute it.

BC/BS would pay for your PICC maintenance supplies like saline and heparin flushes and dressing change kits. You could order these things through Infuserve America to save money. They are great about helping you work with your ins co to seek reimbursement. They also have the cheapest price for IV meds if you have to pay out of pocket.

If you get coverage with your boyfriend through Anthem BC/BS you could keep Medicaid as your primary or secondary (not sure of specific rules...). This would help you otherwise pay for all copays and other medical needs. Would generally reduce your healthcare costs.

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AuntyLynn
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UM - Katrina -

Unless Mass has a "domestic partners" law (which is usually reserved for same-sex couples) I don't think your Boyfriend will be allowed to put you on his policy - you need to be married.

Sorry to deliver bad news.

Now I'm just realizing Mass. condones same-sex marriage, so there won't be a "domestic partners" law there.

On the other hand, I'm really not sure that the Mass. doctor protection law will enforce insurance payments - what it WILL do is protect LLMDS from insurance "witch hunts." Hopefully, that will attract more competent LLMDs to the state, because in my search for someone for my mother, I wound up piking a practitioner in a neighboring state.

Any chance you two could move to Rhode Island? That's where insurers MUST PAY for long term Lyme treatment!

Otherwise discount prescriptions and home service IV apparatus looks like the alternative option, if your own insurer refuses to pay.

Although a cousin of mine who is on MassHealth, managed to get a doc to give him 8 weeks of doxy - which was a surprise. He was having neuro symptoms but feels much better now. Fingers crossed.

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lax mom
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Auntylynn,

Some employers cover domestic partners even if it's not the law of that state. I used to work for one and covered my then fiance, now husband, on my plan...the crappy part about it is that you pay extra taxes on that extra benefit, as though it were your income.

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(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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randibear
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Kat i wish I knew what to tell you. The stress of moving and starting over would kill me. Everyone has different insurance plans and payments and they change from state to state

I have been blessed that I have federal bc/bs and a marine corps tricAre for life. Also a lot of my strips I get at the
Base and if not there wallie world only chArges me from 2-4'bucks and that includes bp meds.

I go on Medicare next year and am scared to death.

I hope you can figure out something.

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do not look back when the only course is forward

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AuntyLynn
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lax mom -

Aha! The EMPLOYER might condone it! Good point!!!

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beaches
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Katrina, have you called up any infusion companies? Someone mentioned Infuserve America. We used them as well and they are very good.

Check out their link regarding "Therapy Quotes" -

http://www.infuserveamerica.com/index_files/LymeDiseaseinfuserveamerica.htm

"Infuserve America has worked with the Lyme community since the late 1980s. Over that time we have earned a reputation for quality products and fair pricing. We will give favorable pricing to patients with Lyme who have no insurance or have had claims denied."

As far as you moving, that would be a hardship--moving away from friends and family, moving expenses, setting up a new residence, etc. Moving is stressful and expensive so you'd have to take that into account also, which I'm sure you are doing.

If you absolutely had to move, you'd probably be better off going to RI like Aunty Lynn said because of the new law and because it's much closer to MA and maybe less expensive to move to, and also closer to your family and friends.

But even then, there might be residency rules, like you have to live in the state for x amount of time before you can apply for benefits. I don't know that for sure, but it's something to look into.

Another thing that dawned on me when you mentioned your BF's insurance is that I thought the same thing Aunty Lynn did--that you'd have to be married in order to be on his plan. So that's yet another thing to look into.

Lastly, I apologize to you. I did not mean to take the discussion off your topic. I realize that I have my own frustrations with medical expenses, treatments, outcomes, insurance issues etc. etc. etc. and I should have just started my own darn topic since I feel so strongly about things!

I hope you find the answers you need. Best of luck and health to you.

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SouthPaw
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To update my earlier post about insurance companies changing rules....I was told earlier this week they just changed rules to eliminate coinfection treatments beyond 28 days as they have for Lyme.

I got the phone call today - BC/BS in fact DID approve extending my IV treatments past 28 days "with no restrictions". They didn't ask for copies of blood tests for coinfections, just a letter from my doctor stating I'm also being treated for Babs and Bartonella. It was a huge relief, I started day 29 yesterday and would have had to come up with $460 by tomorrow.

So it looks like Harvard-Pilgrim changed their rules but not BC/BS.

The PICC nurse was telling us about how many of her patients had to stop IV early because their 28 days was up and IV too expensive. She did mention some patients left the PICC lines in and insurance still paid for PICC maintenance and weekly nurse visits, just wouldn't pay for the meds. So they had time to find or save some money without going through another PICC insertion.

katrina, if you can get on Mass BC/BS that would be great. Not all plans deny pre-existing conditions and I know Mass banned those restrictions in 1993 (unless they changed after I left in 2002) but unless you have coinfections will still be limited to 28 days IV. Make sure you check on the plan's coverage before getting discouraged about pre-existing.

I don't know if the 28 day timer gets reset because you switch insurance companies but might be a possibility. When I was on Mass BC/BS had surgery on my elbow for a pre-existing condition, and my wife had several operations for NF1 that was pre-existing. I worked for a small car dealership so didn't have a great plan but was covered.

I wish you the best of luck.

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katrinab
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Thank you all for your help. I am moving to Washington d.c or nearby states such as Virginia and Maryland only. My boyfriend will be moving for a job, I want us to stay together so I want to move. Don't know if it will work out though.
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SouthPaw
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katrina, i did some research today and found you can't be denied coverage for pre-existing conditions IN ANY STATE as long as you haven't had a break in insurance coverage of more than 63 days. It's a HIPAA law.

Some states extended this period ranging from 90-180 days, but DC, MD, and VA follow the 63 day rule.

The Mass ban doesn't apply anymore. Only Michigan and Hawaii don't allow pre-existing restrictions at this time.

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katrinab
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Thank you so much for finding that out for me.
Posts: 723 | From boston,ma | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
   

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