Since it's the open enrollment period of Medicare drug plans until Dec. 7, I really need to figure this out.
If one has Medicare and Medicaid both, who pays for:
instal of a port or picc?
infusion supplies such as heparin, bags of saline, tubing, etc.
the medications that get mixed into the saline such as ceftriaxone for IV.
and if one has Medicare and Medicaid, can one get these supplies by mail order -- covered -- or does it require a VNA type set up?
Has anyone had particular success with a Medicare drug plan for long-term IV supply coverage?? Which one?
Has anyone had particular success with any one state's Medicaid?
Also, for those with ports, it seems like one can maintain it at home and self admin the meds, correct?
Would love any information or clarification on all of this. Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It depends upon the state in which you live.
Medicare - federal
Medicaid (as secondary) - each state is different.
Still, since it's the law that everyone with Medicare as their primary insurance MUST carry the pharmaceutical coverage with PART D, through whichever carrier they choose,
[or as part of a Medicare HMO they choose instead]
that may supercede any Medicaid drug coverage (at least in my state, it would - state Medicaid is not going to cover medicines - that is now up to Medicare Part D coverage). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is a lot to consider. You ask good questions about the various parts of this to make the whole work. I do not intend to dissuade you or toss barrels in the road -- just don't want to see anyone get caught off guard.
Typically, the most Medicare would cover for lyme treatment is 28 days. It's in their guidelines, according to the IDSA maximum. And that would be with the magic code few can attain: CDC criteria all met.
They are not keen to cover IV. But, if IV is on the table, they won't cover any in home services. You would be required daily to go to an infusion center and get the Rx directly from that location, too.
[or have in home service via medicaid, if you have a medicaid doctor who will order that - and it can vary state to state]
There are some ridiculous rules. I checked into this years ago when I the manufacturers of Rocephin actually donated the Rx for IV. I could find no way to get it INTO me, though, as the Medicare rules were such a blockade. I had to decline the offer.
Although too sick to go to an infusion center daily, had I done so, I could not have used donated medicine from the mfgr. I would have to get Rx from & billed from the infusion center.
Medicaid in my state would cover nothing about lyme so no in home services. Your state may be very different, though.
Getting an IV line into me, a port or central line, would also not be covered as it would need to be done in hospital radiology department to monitor placement and no MD would sign off on that (because there is "no lyme" in my state).
Although criteria may vary state to state, be sure which doctors' orders will be honored where.
It was a LL ND (naturopathic doctor) who was so insistent that (due to the advanced years with severe neurolyme) I needed at least 9 months of IV treatment.
Again, in your state, likely differences.
State Medicaid may cover some in home infusion care in some states. But, again, it just depends on so many variables and it can be hard to have assurances beforehand.
Medicare follows the IDSA guidelines and 28 days is the maximum, sometimes less.
Check with your area and state lyme support groups, though, for how some may find what they need around, or outside of these constraints.
If you find someone near you and you start comparing notes, be sure they are in the same BILLING REGION for medicare as you. Even in the same state, sometimes there can be variations depending upon the billing region.
There are some who have managed, however, to have some things covered.
Also, know that if IV does not go through, there are other avenues to explore. I figure there is always some other way to win. -
[ 11-30-2014, 01:55 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Keeb...have you found any state medicaid that will treat lyme? My brother is on it and it only does very minimal...he has not been able to work as a carpenter for years because of his hip-it needs to be replaced...they said he has to be in wheelchair for a year before they will replace it even tho xray confirms He was pos igenex...under treated years ago...and still has many lyme sx but isnt fighting for tx. He feels if hip was fixed he could work....i dont know about that now...years ago maybe
They explain away all lyme sx and offer drugs for sx but he mostly refuses
I think medicaid is really minimum care but if it treats lyme id liketo know
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lpkayak,
you say your brother's insurance coverage is his state's medicaid plan
(a more respectful way to eliminate that "on" that can so often crush the integrity of any person. No one is "on" any program, rather covered by, a client of, etc. - just a little fight to try to recapture dignity for all who find themselves in such positions. I know you don't mean "on" as a put down but so very many people do so, I think, if we can change the language, it will help)
Each state can vary widely in what their Medicaid covers (or whatever their state's incarnation of medicaid is called).
One simply can't just move from state to state and be automatically eligible for another state's medicaid. Requirements / qualifications can vary widely, too, and change often. There is most often a period of waiting time, even after establishing formal residency.
There is no way to know from a list, today, what states' medicaid coverage includes lyme / tick-borne disease. I would start with the states where there is a law that protects doctors who treat chronic lyme.
Some states' medical boards are much more vocal in their opposition to the very notion of chronic lyme / proper treatment. I hope your brother is not in one of those states.
Your brother could contact the local and state lyme support groups to see where else people are going for treatment. I will say that I hope he's not in Oregon. That is one of the most lyme-hostile states (by the state medical board) of all.
Also keep in mind that medicaid in many states no long covers medication IF the person is also covered by Medicare. Rx would fall under Medicare Part D.
Most important of all, doctors who accept either Medicare &/or state medicaid are few and far between - and getting harder to find. And LL doctors are even much rarer.
Many have had to close their lists to any new patients with such coverage, many more are just saying they cannot accept patients on either medicaid or Medicare. It is their right, and understandable as the very low rate of payments they receive.
And, in my state, our version of medicaid actually won't even pay what they promise and tell the doctor to just "write it off" - time after time. Even for regular medical concerns that should be covered (not even about lyme).
Doctors can't do that. They have bills to pay, too. But it's the position they've been put in so they just don't take patients with such coverage anymore.
To have had so many times when their payment has been denied also imparts a very heavy shame on the patient. It is beyond embarrassing, to being mortifying. So, I just had to stop believing what they told me on the phone, that I'd be covered. They lied time after time and a doctor can only be so good hearted.
Even if one's primary insurance coverage is with Medicare, the DEDUCTIBLE limit each year (first appt. of year sort of thing) is usually covered at least in part by medicaid. Well, when they don't honor coverage, there will be no second appointment of the year, third, or any . . . no way doctors get paid for their work.
I've not been able to see a doctor for anything - anything - for over 4 years because of this. And that was after 3 straight years prior of this kind of action / non-action from the first (only) appt. for those years.
One of those years, though, I did have a second appt. when I broke a bone in foot.
But, because both medicaid and Medicare played games with the billing dates and kept sending back billing for ridiculous clerical reasons. Even said on and off they never received a bill, after the doctor's office said they sent it multiple times.
But then, there is little they can do for me, anyway. I just better not crack or spurt open anything under my skin. I can handle anything else.
My experience is not all that unusual and I'd not mention it, other than others need to be aware for where it happens. And, for those who find themselves is such positions, it's even more important that they learn all they can about how to take care of themselves, no matter what.
What's on paper for what any insurance plan will cover is often not at all what really happens. THIS is the only reason I share this. I do not know if it is unique to Oregon, to my region or not.
There is no guarantee that even if a state's medicaid coverage might be more reasonable that a LL doctor - or even a LL friendly doctor - could be found who participates in one / both.
In the meantime, your brother should consult local / state lyme support group to see what avenues others might have discovered.
If he considers a particular state, contact local & state lyme support groups there FIRST.
And, my suggestion would be to consider getting a rife machine if there is any way to save up money or sell certain items that could be missed. There are other ways to approach this.
[ 11-30-2014, 04:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Thanks keebler. Im sorry if i said something wrong. I guess im dull from lyme. I dont understand a lot of things but i always say i am on medicare and dont feel embarrassed about it
Ppl where we live go out of state for lyme care. He doesnt have money for that. I dont think he could do buhner cuz of cognitive issues. I did offer to buy the herbs for him. And im pretty sure he couldnt do rife for same reason
But all you wrote confirms what i have seen in maine and nh.
Thank you. And im really sorry you have no option for medical care. I hope you can go to er if something life threating happens
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lpkayak,
Well, as for the ER, I've decided that would not be a place that would ever work for me. The noise alone could kill me. And that's no joke. I've been kicked out of ERs more than once for seizures from their noise and surprise alarms.
I've also decided that I cannot take on any surprise debts as can incur at the ER. Just not gonna happen. Supposedly, though, for one "covered" by medicaid and Medicare, there may be some protection from surprise charges but, again, no guarantee -- and the way a condition is coded (and whether covered by mc or MC) can make or break someone financially. I will not take that chance.
Could someone help your brother "do" the rife? Maybe someone in a lyme support group nearby? At least a support group leader may have an idea if any such helpers might be around.
Yes, Buhner's detail takes more a brain to sort it all out.
Zhang's protocol is MUCH easier, though. Could he stand smelling like garlic? He won't notice it but others will. I did great for the time I could afford that. It's excellent.
I'm also afraid that if he were to move for Medicaid being better in another state, that the "vetting" of all that would require a lot of tedious time and checking - and no guarantee.
As for the phrasing with low cost insurances, etc.
you did not say anything wrong at all. I'm sorry if that's how I made it sound.
It's very common for the "on" to appear in front of: medicare, Medicaid, SS disability (all plans that we pay into for coverage -- or places we find ourselves when the medical system fails us and we loose jobs, etc.).
It's just that when most say that the "on" carries a lot of criticism so that even with those who have none of that say it, the feelings of all the others who do use it with sharp criticism can add to the feelings of shame many at this end of the spectrum can find themselves, through no fault of their own.
If we can start talking like all insurance coverage is just that, coverage or a policy, rather than a "program" for someone to be "on" it
just might help in some small way for those who have no choice to feel a bit more like a "regular" customer, even if their insurance plan leaves a lot to be desired and in no way really measures up.
Still, all this can vary widely from state to state. Some have gotten coverage - somehow - and the local lyme support groups would be the first places to look as to how that might work.
Changes in coverage, though, to be considered soon / future should be researched through the particular state to try to minimize surprises. -
[ 11-30-2014, 08:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks everyone this is hugely helpful info (esp. Keebler, thanks for taking the time for so much detail as this is crazy-confusing!!).
Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
Printer-friendly view of this topic