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January 18, 2006

Comments

"Shame"? Au contraire. The Rx drug benefit is operating exactly as Bush and his allies intended it to.

The Rx drug benefit was drafted for the benefit of Big Pharma, to head off the flood of people buying cheaper drugs from Canada; thus the ban on negotiating better prices. The Rx drug benefit was delivered to Congress with a deliberately false projected cost estimate, along with a threat to fire anyone in the Administration who revealed the accurate projections. The AARP acknowledged the program was flawed, but promised to "fix it" - how and when being anyone's guess - but supported its passage, however tepidly, and that sufficed to help pass the damn thing.

The Rx drug program also has the added benefit of giving Bush another example of a "failed federal program" when he wants to talk about how government programs that address citizen needs "don't work." Just another example of federally funded programs (e.g., SocSec) and agencies (e.g., FEMA) the GOP sabotages - though not before making sure the funds go to their allies and the jobs to their cronies.

On a somewhat related note, and in case anyone's wondering what Ralph Nader has been up to lately, Nader's Public Citizen organization pressured Abbott to stop manufacturing and distributing Cylert (generic name “pemoline”), a drug that treats, among other things, narcolepsy. There are other treatments, but none nearly as effective, and there are people who need Cylert as part of a multi-drug regimen, without which they simply cannot function.

There was no advance warning that the drug was being discontinued: patients found out about it when they went in to refill their Rxs, and pharmacists apparently either had no back stock or were told not to distribute that, either. So, as with the Rx drug fiasco, patients were abruptly abandoned, with no recourse or alternative. How much this was due to Public Citizen's lobbying, and how much it's due to Abbott (and other drug companies) not wanting to bother with what qualifies as an "orphan drug" anyway, is the subject of much angry, despairing discussion.


hil: as to this, "It turns out that the medication I take -- Mysoline/primidone -- is not covered by almost any plan. ... What's particularly crazy about this is that my medication is fairly old."

A cynic would say that the lack of coverage is a feature, not a bug. I have a vague (and quite possible false) memory that drugs which had dropped out of patent coverage were explicitly excluded from the list of covered drugs, so that the consumers would be forced to buy drugs under patent.

What was Public Citizen's motive, or claimed motive?

Rilkefan - The drug can cause liver damage. But the people who take it say they get tested regularly for that, and I don't know the incidence rates, or how it came to Public Citizen's attention.

If you want to know the details, there are details a-plenty in a rip-roaring discussion at MakingLight, where I found out about it. Go to http://nielsenhayden.com/makinglight/ and scroll down to the January 2 entry, the title of which I can't post without breaking ObiWi's ban on the f-word.

I suffer from petite mal seizures, controlled by Lamictal. I also last about 4 days after stopping meds before they start. The seizures are pretty mild, but still enough trouble to interfere with driving, work, life in general. If I was unable to get the meds I'd probably lose my job. If I was denied meds due to political games I'd consider getting violent with the individuals responsible - after all, with a history of seizures the insanity defense looks pretty plausible.

But here's a link.

Mass murder.

I didn't include losing my job among the side effects of losing access to meds, but in fact it's quite possible that my employers would not fancy the idea of someone with an active seizure disorder lecturing to their undergrads. There's always the antidiscrimination act to be thought of, and I'm not sure whether tenure has an out for physical incapacity, but if I didn't have tenure, I think I might very well not get renewed.

European Prosecutor:Mr President, did you understand that the Medicare bill you signed into law was so complicated and flawed that desperate people might not get their medicines, and so be damaged or die?

Bush:No, I thought it would be just dandy for everybody?

EP:Why, the bill is nightmarishly complex in implementation on simple perusal. Did you read it? Did you at all understand what you were signing?

Bush:I understood the big picture and made the big decision. I don't do details, I have peons, umm, assistants and policy guys for that stuff.

EP:Hmmm. Would you send troops into battle without knowing what opposition they will face? Would you appoint political allies to critical positions without regard for their competence? Your honor, I will introduce evidence that this is precisely how the President behaved, and this pattern of ignorance and irresponsibility is so consistent as to be intentional. Therefore, negligent homicide is not an acceptable charge. The Prosecution will later introduce evidence as to George Bush's prior attitudes, behavior and policy (with the specific of the Katrina response/reconstruction) toward the poor and helpless in order to support a charge of Murder in the first degree.

Defense:Objection, your honor, unsupported by evidence.

EP:Withdrawn.

Mark Schmitt on the Medicare Part D

Schmitt has a thesis that Republicans knew that they were passing a bad program, but hoped there would be a general backlash against government rather than against Republicans.

A bad tax bill will cost people money; a bad medical program will kill people. If it was intentionally bad, then murder is an appropriate charge.

May all the people who distorted this bill beyond recognition enjoy the wrath of the most active voting block in the country.

The dead can't vote. Perhaps that's what the Republicans who pushed this bill through are counting on.

Medicare is my neck of the woods. I don't have time to do a detailed comment, but basically you and many other opponents of the program are conflating design problems with implementation problems. CMS is a huge bureaucracy, and in the 9 years I've been in the biz, they've never had a smooth rollout of any new functionality, even when the requirements were much less complex than this drug benefit.

You can have a good program with a rocky implementation, and you can have a bad program with a smooth implementation. The connection people are making between these initial problems and the design of the benefit itself is a very tenuous one.

Ken - leaving out entire classes of meds is not an implementation problem, it's a design problem. The implementation problems are typical of this administration's indifference to effective government, so for those of us who think GWB is unfit to be president regardless of his policy goals, it's just another item on a long list. The more serious problem is that if the program ws implemented effectively as designed it would still leave people without access to needed meds, or with high prices for their meds.

Ken, if you look at the second half of Hilzoy's post and what Kriston wrote (see especially the letter from the Epilepsy Foundation that he links to), it certainly seems like there are problems both with the rollout and the design of the benefit itself.

kenB, so what about the apparent design flaw of omitting many unpatented medicines from the list and including recently developed drugs that are under patent? If Medicare no longer gives access to tested, trusted and effective medications, that seems like a pretty big bug to me.

hilzoy, my sister also developed epilepsy as a young woman. Unlike you, she didn't get the drugs she needed for several years. She had several seizures even under medication, lost her license, and even lost her rented room as the landlords were scared that she might die on their property. Luckily, she is now on meds that work. She can drive and has been seizure free for over a decade. So your story definitely hit home for me.

I'm starting to think that the biggest problem with Bush is that he's an evil man, and our public discourse doesn't have any room for declaring that a political opponent is evil.

Come on, folks.

Conservatives have been saying for *decades* that public assistance programs (including Medicare!) are government teats, and that tax dollars shouldn't be wasted on them. The second line of reasoning has always been that they're inefficient anyways, so the market would serve people better...

If this program crashes and burns it won't be seen as proof that the Bush admin borked up an important service. It'll be trumpeted as further proof that the government shouldn't do it at all.

certainly seems like there are problems both with the rollout and the design of the benefit itself.

I'm not arguing that there are not problems with both. I'm just saying that they're not connected. Many people are using the rollout issues as a cudgel with which to beat the design, and it's simply not justified.

Republicans knew that they were passing a bad program

Of course they did; that's why they had to have the vote literally in the middle of the night, hold the roll call open for three hours, bribe and threaten the holdouts, bring an administration official onto the floor of the House to lobby (unprecedented). If it had been any kind of decent bill, more House Democrats would have voted for it (only 16 did).

The problems with the bill were known, publicly identified, and ignored by the Republican leadership. I'm leaving aside the gagging of the HHS expert prevented from testifying to the true cost of the program.

My one comfort is that the hardship and suffering this bill causes is spread evenly around the country, to red and blue regions alike. Surely this will be the final wake-up call to take down the all-graft, no-governance "permanent majority" machine.

Kevin Drum has a link to an article in the Prospect which every liberal should read. It relates to this discussion and to the phenomenon which has frustrated us all: the failure of 40% of the voters to get outraged, no matter what Bush does. The gist of it is that a significant number of voters don't respond to issues. There is, according to the article, a swing toward what is called a nihilistic rage-filled Social Darwinist individualism (lovely description of Bush's values, seems to me). In this moral vaccumn people vote for the person who seems to have moral values, not the candidate that has their issues. Since Democrats don't talk in political speeches about values and do not put issues into a values context, we have ceded that kind of voter to the right, the politicians who push the values buttons while delivering nothing of real moral merit. So--will the masses rise up in outrage over this? Will it effect elections? Maybe a little but only in races in which the Democrat runs as a person who speaks sincerely of moral outrage over this administration and presents an alternative within a context of values.

completely OT: all you former Zork fans must read this

KenB - I see your point, and I agree that teething pains mustn't be conflated with the very real design problems this program has. On the other hand, the teething pains are a direct reflection of administration incompetence or indifference, as are the design flaws. Different symptoms, same disease.

On the other hand, the teething pains are a direct reflection of administration incompetence or indifference,

Hmm.. if you say that, then you don't see my point. The MMA bill didn't specify all the implementation details -- that's the job of the bureaucracy. And many of the people at CMS have been there for years, way before W came to the White House, and their track record is lousy. You guys know I'm no fan of Bush, but to pin these particular rollout problems on him is a real stretch.

But thanks for that Zork link, that's friggin' hysterical. My only criticism is that s/he's mixing up adventure systems -- Zork allowed commands with more than two words.

You guys know I'm no fan of Bush, but to pin these particular rollout problems on him is a real stretch

up until it actually started, he was taking a lot of credit for its (predicted) success.

"You guys know I'm no fan of Bush, but to pin these particular rollout problems on him is a real stretch."

Hmm. Depends on how many of the people responsible for planning and carrying out the implementation are Bush appointees, and their hires, all of whom have a proven track record of driving out competent people and replacing them with incompetent ideologically-correct hacks.

kenB - I realize that the implementation details are the job of the grunts at CMS and therefore cannot be totally laid at the feet of Bush and those stalwart Republicans who rammed through this ill-conceived plan.

However, part of the problem is that the bill itself, due to its allowing for multiple plans, each with its own formulary, deductibles, copays, etc, created a headache for those doing the implementing.

Anyone with experience in the insurance field, or those who have gone through changes with their health insurance at work know that the initial transition is never seamless. And considering the scope of this plan, even more problems would by nature be expected.

But the administration, in basically allowing the pharmaceutical industry to write this bill, created a morass that guaranteed major problems.

On the personal side, my mother-in-law is in this plan. Fortunately for her, she has a son-in-law (me) who works in the insurance field and was able to make some sense out of everything.

The one plus is that due to her only having SS income, she qualified for extra assistance which means no deductible and most copays waived. However, I had to apply for this so she could get the waiver, then look at the plans with a list of her meds next to me.

The State of Illinois is also giving some aid to seniors on limited income. (In fact, they were doing this prior to this act going into effect.

As far as I can tell, she comes out way ahead with this plan, but if she had had to try to figure it out on her own she would have been completely loss.

BTW, the fact she comes out ahead (actually to my benefit as my wife and I pay for her prescriptions) in no way causes me to look positively at this fiasco. I tend to agree with those who feel this whole thing is another way to discredit government and entitlement programs.

KenB, you say: "if you say that, then you don't see my point. The MMA bill didn't specify all the implementation details -- that's the job of the bureaucracy."

But conservative Republicans have been saying for decades that the bureaucracy is broken and wasteful. By pushing through a plan and handing it over to that same bureaucracy, they demonstrate that they either (1) don't really think it's broken, or (2) think it's broken, but consider PROVING that with a spectacular failure more important than helping Americans by fixing it.

Bear in mind: the people in these stories are, by definition, the poorest people on Medicare.

And my parents, who are not, have had no problems with the program. Which makes me think: old people are a substantial voting block. However, if old poor people already vote Democratic, their suffering will not cause them to change their vote. If so, this fiasco won't have any more electoral consequences than did Iraq, Katrina, etc.: those able to shrug at the unnecessary suffering of others will continue to do so.

kenB: working in the same field, I know that rollouts of big changes to legacy systems are almost always problem-filled. Was the deadline unrealistic? If so, someone should take blame for picking it. I know that problems were predicted; whoever brushed off the predictions instead of putting fallback plans in place deserves blame. And someone may deserve blame for not slipping the schedule.

You're right that the implementation should be separated from the design.

kenB: working in the same field, I know that rollouts of big changes to legacy systems are almost always problem-filled. Was the deadline unrealistic? If so, someone should take blame for picking it. I know that problems were predicted; whoever brushed off the predictions instead of putting fallback plans in place deserves blame. And someone may deserve blame for not slipping the schedule.

This is the right kind of criticism IMO. The deadline was unrealistic, and we all saw the train wreck coming up to a year ago. CMS was probably 4-6 months behind where they should have been to make the rollout reliable -- final versions of important file specs weren't available until early November (and there were some changes even after that), on the weekly national conference calls they often had no answer to critical questions (even worse, sometimes they seemed to be making policy decisions on the fly), etc. Back when there was talk of delaying the benefit a year to save money, we were thinking that that would be a wonderful thing -- there would be plenty of time for the HMOs, pharmacies, etc. to design the supporting systems and for everyone to do plenty of testing.

However, delaying the benefit would have created problems of its own -- it would have disrupted systems changes and hiring for thousands of companies nationwide, start-up companies expecting to get revenue starting January 06 would probably have had to fold, etc. Obviously there would've been some political fallout from a delay as well. Contigency plans would have been a good thing -- given that many states were able to jump in and fill the gap quickly using the existing Medicaid systems, it seems clear in retrospect that the feds should've coordinated with them ahead of time to make sure they still had that fallback.

But I don't know exactly which decision-makers deserve the blame. The CMS folks were nothing but optimistic on all the calls, right up until the end, and really, considering all the churn over the last couple of months, it's amazing how well things have worked overall. Obviously that's small comfort to the people who were so drastically affected by the problems that did occur.

You can have a good program with a rocky implementation, and you can have a bad program with a smooth implementation.
The connection people are making between these initial problems and the design of the benefit itself is a very tenuous one.

This is only partly true. If the only reason the program is "bad" is that it is simply unwise then of course it might be rolled out smoothly.

But part of the reason this program is bad is its unnecessary complexity. The users of this program are old people, many of them quite ill, many others, not ill, with a need to use it immediately. That means that ease of implementation ought to have been a major consideration in the design of the program. That it was not is a serious design flaw. The connection between this design flaw and the implementation problems is not tenuous at all.

This principle is hardly limited to Medicare part D. When software, for example, is difficult to use and buggy, that is the fault of the developer, not the customer. Ease of use by the intended audience is an important design consideration.

Holy hell. I had a flatmate and also good friend who was a severe grand mal epileptic. Her epilepsy wasn't fully controlled -- but she got "warnings" of a full seizure -- and so she had to restrict her life a bit, and we sometimes had to ask her to restrict it further (ask her not to go on mountain walks alone on some days), which wasn't pleasant for her. (To put it mildly.)
Aren't benzodiazepines and barbiturates (which, come to think of it, might be prescribed for epilepsy) excluded too?
Is it beyond the capability of the US to provide a plan whereby people pay National Insurance and as part of the payback, get prescription drugs cheaply and if they are over 60 or under a certain age or have certain conditions (including epilepsy), free? (As in the UK, so, my friend didn't have to worry about drug costs in addition to everything else.

but in fact it's quite possible that my employers would not fancy the idea of someone with an active seizure disorder lecturing to their undergrads.

Yes -- people can be dreadful about this. Not just employers, I add. When I told my colleagues a student had just had, as it were out of the blue, a grand mal seizure in my first seminar of a course (the medical centre'd failed to inform us he had epilepsy), they were sorry for *me*.

When software, for example, is difficult to use and buggy, that is the fault of the developer

errr... as i programmer, i must protest.

while "buggy" is almost certainly the fault of the developer (presuming enough time is allocated to finish the job), difficult-to-use is the fault of the designer.

Prescription Drugs

Kevin Drum on implementation problems, with good links. Medicare went online in the sixties with nowhere near this amount of difficulty.

Sorry -- you covered barbiturates -- I didn't see that (I was too angry, I think).
I agree with the commenters who think some of the plan's bugs are features.

difficult-to-use is the fault of the designer.

Well, it could also be the fault of the customer, if they were unable or unwilling to give the designer enough information on their business practices. We run into that all the time.

jayann: oddly enough, I have a certain amount of sympathy for your colleagues' point of view. I have, as I said, no "experience" of my grand mal seizures. (Also, no warning, I think, although it might just be that with only 3 seizures, I don't have enough to generalize from.) So it's hardly terrifying and awful for me. Years and years after the fact -- which means, after years of making sure that I was never scared by this, never thought of it as a burden for them, etc. -- my parents told me how completely terrifying it was for them when it first happened. And I can easily see that it would be, especially to someone who doesn't know anything about epilepsy and seizures.

The chewing up one's tongue aspect, on the other hand, is no fun at all, and a very legitimate cause for pity. (I have teethmarks on mine still, from when I bit off a small piece, though you have to squint to see them, and it's not usually something I advertise.)

Cleek:
while "buggy" is almost certainly the fault of the developer (presuming enough time is allocated to finish the job), difficult-to-use is the fault of the designer.

KenB:
Well, it could also be the fault of the customer, if they were unable or unwilling to give the designer enough information on their business practices. We run into that all the time.

OK guys. My analogy wasn't perfect. I think the point stands.

Hilzoy, your reaction's characteristically nice and tolerant... it isn't so much that they felt sympathy for me -- they didn't know then that I'd lived with an epileptic -- as that they didn't really think of what it must have been like for him even given that he didn't remember what had happened. (He was just fine, afterwards, but then he'd been epileptic for a while, and he took a robust view of people's possible attitudes.)

The chewing up one's tongue aspect, on the other hand, is no fun at all,

and it's the one that worries us non-epileptics too because we know the danger. -- I've never, thank goodness, seen a seizure that involved that, so have not had to feel (as I bet your parents have) that I should have been able to prevent it... Also I haven't had to go through what your parents did when you had your first seizure.

I suppose I am a bit hard on the colleagues but then I am also fairly appalled by general ignorance about epilepsy. (My learning began at my grammar school: one student had epilepsy, one had psychogenic seizures which were purely psychological in origin.)

Hope you don't mind if a lurker chimes in, but this is one of the best descriptions of living with epilepsy I've come across. I'm in Auckland, New Zealand, where we still have a reasonably public service orientated health system, and I can't praise it enough for all the help it has given me in dealing with my epilepsy. (I had emmigrated here on my own in my twenties when I had my first grand mal episode. At a party, in front of a first date and about 50 complete strangers, and yes it was very messy). It was our health service and the specialists involved that guided me through the process. The idea of not being able to get my meds actually scares me in a similar way. Similarly I live miles out of town in a place I love, but without the meds I too would have a seizure and lose my license, and the changes I would have to make to my life would be significant. More importantly having my meds reassures me; I feel comfortable dealing with the world on the basis that everything is under control and I'm not going to soil the office carpet of one of my clients. Also some of the posts are right about how people react to the condition; we can prove these days that it isn't demonic possesion, although I do understand why people would freak if a seizure unfolded in front of them. As mentioned I have no idea what happens, or what it looks like when I have had a seizure, but I'm picking it isn't pretty. Sorry to rant, and I realise that your internal politics are none of my business, but this is no good in such a developed country. I'm sure there must be something that your current administration has done in an orderly, timely and efficient manner, but I can't remember reading about it

Phil -- welcome, and I can't imagine the awfulness of having a seizure on a first date. My peer group, which actually included the guy I had a crush on, was bad enough, but a first date might be even worse. Just thinking about it makes my hair curl. (And it's not the least bit curly.)

Please feel free to comment on our internal politics -- in general, I think that a lot of people in the US have very little sense how we strike others. (I also think that a lot of other countries, though not NZ, have very little sense of what it's like to live not, as in e.g. France or the Netherlands, with lots of similarly sized countries all around, but separated by oceans from everyone except Mexico and Canada. We don't have to notice other countries in the same was as, say, the Dutch do.)

Wow, Phil, I have to recalibrate a bit realizing you are in Auckland (not that I thought bad thoughts about you or anything like that, just need to reset the frame)

Just a suggestion to the powers that be, we have a number of non US commenters here, inviting a possible guest post about the political/cultural/what is on the horizon post from them?

I've never put anything in a comments section before, so thank you for a very gentle introduction. In NZ we seem to have two very different views of the US, depending on the argument. The first is overwhelmingly positive, in that you have built a nation with enviable ideals and success, something which NZ has aspired to achieve; we are also a young country, and we have had to find a way of dealing with a new country and an indigenous population (we'd probably argue that our way was better with the Treaty of Waitangi, although the results in terms of poverty and life expectancy have probably turned out much the same). There is also a very strong independent and in some respects egalitarian picture of the US that we are fond of, summed up by the support that was given in WWII. On the other hand we are very proud of our indepedent foreign policy; the two high points being declining to send forces to Iraq, the other being our nuclear free status. We really don't like being told that we will never get a free trade agreement (for good or for bad) because of our nuclear free status. So when we start getting pushed around because of either of those policies, things go very anti-American very quickly. We still have a deep scar from the Rainbow Warrior bombing in Auckland harbour, not only because France breached our sovereignty and murdered an innocent man, but also because England and America offered no support in the international community in our efforts to bring those responsible to justice. Sorry if I'm ranting but everyone has finished work early so I have free time on my hands.

We don't have to notice other countries in the same was as, say, the Dutch do

If I travel by car in a straight line for three hours I'm in another country with another language & culture - no matter which direction I take :).

But you are usually not aware of how integrated your culture and your norms are, even if you live in a tiny country like ours. Knowing all those other countries did't help me even half as much as marrying a foreigner who regularly points Dutchisms out to me. Usually things that I always considered to be normal standard human behaviour - and often by completely cracking up.

Phil: we blame the French most of all actually (the victim had Dutch nationality).

Am I just getting old, or is there another Phil as well? This shouldn't be taken as pulling the welcome mat back, I think it's really great to have people who can give different perspectives.

we'd probably argue that our way was better with the Treaty of Waitangi, although the results in terms of poverty and life expectancy have probably turned out much the same

No, stick to your guns on this one, if anyone claims that things turned out much the same in the US as NZ, they have never dealt with Native American issues in a serious way. Yes, you guys have some serious friction, but because the Maori-white encounter took place, depending on how you count, 200-300 years after the Native American-White encounter, and resulted in much more of a stalemate (leading to the treaty) than the encounter in Australia, NZ is miles ahead in this regard.

phil: welcome. feel free to ramble. most of us do.

[i'd exclude myself, but then the very process of doing so would lead to me rambling...as i'm doing right now. hmmm.]

May I suggest "Phil Auckland" as a handle? My memory is also that there's another "Phil." (Thanks for bringing up the Rainbow Warrior bombing, about which I knew nothing until I spent a few minutes googling. What a bizarre atrocity.)

What a bizarre atrocity.

Yeah, and the whole thing where the woman imprisoned got pregnant so they released her amazed me. One of the reasons why I don't argue about France's pristine motivations for anything.

Welcome from a fellow kiwi and very occasional commentator.

Chirac recently reserved the right to use nuclear weapons in retaliation for terrorist attacks. I'm not sure whether to laugh or cry.

Hilzoy,

Why not call your affliction by its correct name: Demonic possession!*

Seriously though, when was the last time that your neurologist had an EEG done? Three grand mals is a relatively short history (I'm at nineteen, but all nocturnal), and they all happened in your teenage years. There are many who have epilepsy during adolesence and then it goes into abeyance. You might no longer be epileptic.

(I actually felt pissed off when I was 25 and the neurologist told me I wasn't epileptic anymore - it was part of my identity - "Give me back my disability, bastards!". However, it came, strangely, back again 10 years later. After unsuccessful use of Keppra, went back onto carbamepazine.)

* At least, that's what my wife called it the first time she saw me have a grand mal seizure.

USA: they tried that, back when I was 25. I had EEGs, they concluded that I was in all likelihood no longer epileptic, and weaned me off meds. Four days into my med-free state, boom! my third seizure.

Since then, I have taken the view that the risks (including e.g. the risk of losing my license) aren't worth it. I have no side effects from the medications, and I frankly am absolutely not up for another one of these little experiments. When I was 25 and a grad student, I was living in Cambridge MA, where I could bike or (if need be) walk wherever I needed to go. That's no longer the case, unfortunately. It would, I think, be different if I were thinking of getting pregnant: last time I checked, there weren't many antiepileptic drugs that didn't involve some real risk of serious birth defects. (On the other hand, having a grand mal seizure probably isn't all that great for a kid either.) But I'm not, so there we are.

I think I'll go with NZPhil if that is alright. I don't actually live in Auckland itself; I'm about an hour north in a seaside community called Manly on the Whangaparaoa Peninsula (Manly Phil did cross my mind but it seems a little too Powerline or LGF in it's desperate masculinity).

NZPhil: I think I have actually been to Manly! (I remember cracking jokes in my head at the time. Sort of like when I went to Rowdy, Kentucky.)

Since I refuse to sign up for a blogger account for the HoCB thread on the subject, I'll contribute my silly place names here:

Floyd's Knobs, Indiana
Fredonia, New York (think of the Marx Brothers movie)
Thorofare, New Jersey
and of course, no list is complete without Intercourse, Pennsylvania

I've added yours as an update to the post Dan. For regular commentators here, we are more than willing to go the extra (insert your favorite linear distance measure here)!

Dantheman: I collect silly place names. My favorites (in the US, at any rate) are:

Eek, Alaska
Cheesequake, NJ
Meddybemps, ME
Bugscuffle, TN

But really, the part of Kentucky where Rowdy is located is the best region ever for of silly names. Besides the Hazard Waste Treatment Center, which at least used to exist in the county seat, Hazard, and besides Rowdy, there were:

Hardshell
Softshell
Quicksand
Vortex
Dwarf
Fistie
Dice
Viper
Butterfly
Turkey
Guage
Decoy
Furnace
Doorway
Tiptop
Hippo

And best of all:
Whoopflarea!

Tacky Town, KY is a bit too far south to be considered in this area, but it's still worth a mention.

I also don't intend to get a blogger account but, as long as weird place names are up for discussion here as well, surely Dildo, Newfoundland has to make the list.

"It would, I think, be different if I were thinking of getting pregnant: last time I checked, there weren't many antiepileptic drugs that didn't involve some real risk of serious birth defects."

If your as much on the knife-edge with regards to seizures, then I'd say a grand mal is a lot more risky to your child in the womb than the antiseizure drug.

However, there have been a *lot* of new antiseizure drugs out in the last decade (a quick Google turns up lamotrigine, frex., that reportedly has a lower birth defect rate). But, as my experience with the non-efficacy of keppra showed, it's a toss-up whether it'll work on your epilepsy.

I have nocturnal seizures only, so it interferes with my life a lot less, fortunately.

(Below is an email I wrote to anyone in the system who I thought could do something. I have received replies from one place that wants to send it to consumer advocates working on this issue.
I also spoke for a half hour with one of my senators.
My seizures ARE life threatening.
I was so insulted by Bush's statement for telling insurers they had to give us a 30 day emergency supply of medications. That safety net WAS ALREADY in place and is not working Marie Antoinette. Then, to hear that Dr. McClellan, some head of this mess, apologize to the phamacists, but not the people who can't their medications, put me over the top!!! God help us all!)

I don't know where to even start. I am one of the duel eligibility people that was placed on a plan they chose. I didn't get the information and card for this plan until Dec. 27. When I read the formulary, I noticed 4 of my 5 medications are not covered.
I called the plan itself to verify this. Anyway, I then call the medicare helpline.
That is where the problems started. They said I should sign up for another plan that DOES cover my medications. I did so and got a confirmation number. This was on Dec 27th., They assured me it would allow me to get my meds on Jan 1. Well, I went to fill a prescription on Jan 3rd. The plan told my pharmacist they never heard of me and medicare must not have sent them the info.
I call medicare helpline again. Absolutely no one knows what they are doing!!
I ended up having to call back repeatedly. I spent 10 hours on the first day of calls. Again the next day I started at 4:30 A.M. to get answers...And after about 40 hours and speaking to numerous people, nothing was resolved! I ended up completely breaking down. I sobbed for about 3 days, then got mad and contacted every news media outlet I could and my state senator, Levin.
These are just some of the things the helpline people said to me:
Well it will be 30 days for it to take effect.
Just pray.
The plan you are on DOES cover your medications. (It doesn't, I called them back to recheck)
I was on a 3 way call with two supervisors and they began to argue between themselves about what a confirmation number is. I hung up and called back to get someone else.
I need to talk to Tier 1, which I did numerous times.
Tier 1 said I need to talk to z-tech, who are never available and quit taking calls because they are swamped.
Every time I called back to get in touch with z-tech, I had to speak to an agent first who wouldn't put me straight through and each insisting they could fix my problem, when after a 1/2 hour or so, they then put me to Tier 1, who would run me through the drill again only to say I need z-tech and that they aren't taking calls and for me to call back...which I did for hours and day.
Finally, I went along with what one of them said and once again signed up. They said it won't take affect until Feb 1.
Ahh...I still don't know if I am signed up!!!
Also, they constantly would tell me of some plan that does cover my medications and I should sign up with it. When I got specific with them...it only covered the generic Dilantin, which I cannot take. There are only about 10 medications that it really matters whether is generic or not, this is one of them and I cannot take it.
Anyway, another thing, when I sign up for a plan and I was already in another one, the confirmation number should kick the old plan out.
I was told that I have to disenroll from the old plan...that is not true, but if the system still shows I am in the old plan, it does mean that when THEY signed me up for a new one, it really didn't go through.
Even the Tier 1 helpline people couldn't find the confirmation number that I did indeed sign up...until I told them the date and time I called. When they looked at that on the computer some said oh here it is and rattled it back to me, some couldn't find it. Even the ones who did find it said they don't know what went wrong and I need z-tech...the phantom people they keep telling me about!!!
I could tell more, but I hope you get my drift!!!
It was crazy!!!
I did get the one medication I needed at that time. I told my pharmacist to go ahead and try to run it through medicaid. And although everyone at medicaid and medicare said they would not pay for it, they did!!! Thankfully I had the idea to try or I would now be in the hospital or dead!


People who are sick and poor don't have the luxury of even one day without their medications while this system gets worked out? How did anyone think that someone could sign up on Dec 31 and it be in effect Jan 1? Why wasn't a safety net put in place...just in case? Why did states have to scramble to get these people their medications, and some still haven't done anything?
Is anyone trying to keep track of how many may have died while this has been failing?
It would be hard to track. Many people, especially seniors, would have took what I was first told and wait the 30 days. If they live on my income, $600 a month, they wouldn't have bought them. Their deaths would be chalked up to their illness or their age, or whatever consequences the lack of medications caused...ie heart attacks, diabetic coma, seizures, you name it.
I know that if states later show an unusual spike in deaths for this January...I am right and people died because of this!!!
I find this the biggest disaster this country has ever faced. The causalities will equal more than any war, tsunami, hurricane, etc. Its a national health crisis. Quiet, but oh so deadly!
I have read articles where people are not getting their anti-rejection medications, heart medications, insulin, etc.

People are dying and no huge media is picking up the story. It is silent, save but a few newspaper articles.

As for me and my medications..I am screwed!!
I may have a plan Feb 1st?? I don't know. Even then it will likely be generic Dilantin which means I will have daily grand mal seizures that rob me of so much. I even had a mini stroke from one. I went through that for 2 years. My weight plummeted to 90 lbs. I am 5'7". I was bed ridden for 8 months. We are talking about a couple pennies more per pill or several emergency rooms visits per week with some being hospitalizations. Not very thrifty or safe or wise!!!
I am on 2 other medications that generics don't work and I can only get the generics, but that won't kill me....
I have had one seizure last 14 minutes, that WILL kill me!!!
I am completely broken. I won't call that helpline back again ever. Several there admitted to me that they read from scripts that are changing each day just to shut us up. Some told me they know of some who quit because they realized people are dying and suffering.
I can call them and get some quick answer that is to pacify me. It doesn't mean I am in a plan or that I will have access to the medications I need.
I have given up. They broke me. It was only the change to non-generic Dilantin that saved me. I will not survive this again and really am not willing to.
At least I got the medications to keep me this far so that I can write and tell you....just how bad it is.
I know it says we had the right to one month emergency meds...that isn't happening either. I was told no by the pharmacies I went to. Read some articles on LexisNexis under medicare. People are suffering.
Pathetic.
I propose that people who can't get their medications go ahead and use the emergency rooms three to four times a day to get them. I have no problem with that. I would bet that would get this story on the national TV news as a huge story, as it it, instead of just some scrolling at the bottom of the screen. And it would make those who aren't affected directly by this now realize that a whole lot of money and resources are being used up by us going to the ER for drugs and THEN maybe it will be as big of a story as the hurricane,tsunami,war. This is way bigger!!!
I heard this called "the hurry up and die plan". I will use the ER and I refuse to allow them to force me to die!

Hilzoy - what a small world. What on earth brought you to Manly? Were you on holiday?

I went to NZ for a conference and spent two additional weeks there, during which my aim was to see as many different sorts of birds as possible. This turned out to be more or less the same as trying to visit as much of the island as possible. Iirc, I had a nice lunch in Manly.

Heather: my God.

It truly beggars belief. I am so sorry.

Re silly place names: Within no more than an hour's drive from where I sit in Brisbane, I can visit both Wonglepong and Jiggill Jiggill (though I'll have to get a ferry to the latter). If I went to Western Australia I could drop in on Useless Loop, though it's hard to know why you would.

Attention medicare part-d subscribers:
Please stop violating natural law and pay for your meds yourselves, or die. Why should this great country, founded on the strengh of inovators and hard workers go bankrupt trying to keep the weekest of us alive??

Yeah,jj...the nerve. We all know its about survival of the fittest. What was I thinking. Now, I will shut up and go lay down and die, as required.
If anyone cares, I did some research...and found out both Tom Delay and Abramoff had dirty dealing in this entire medicare part d program. Delay was reprimanded for bribing another congressman to vit yes on tghis...and Abramoff used some place called Unites Seniors Association to put money given by these drugs plan companies through to do the work to get this passed.
Search..."Abramoff and United Seniors Associtaion" and Delay bribes Smith for vote Medicare Part D".
In the bribe searches, read the ones dated closer to the end of 2004. The oens int he middle of the year, were ones clearing Delay, it wasn't til Dec. of 2004 that they nailed him on it.
By the way, I still haven't got my medications. They are promising for Feb 1st...yeah right!

Go to the Online Social Security Website and see the law that protects a huge amount of Duel Eligible people from being hoodwiked out of their Duel Eligible status caused by the so called Glitch!!

SI 01715.015 Special Groups of Former SSI Recipients

2. Title II COLA (“Pickle Amendment”)
Effective July 1, 1977, Medicaid eligibility was protected for SSI recipients who lost SSI or SSP eligibility because of title II cost-of-living adjustments
I am an advocate for the poor and disabled and those in need of help. I am trying to spread the word. It is my firm belief that the current Medicare glitches are intentional. This was just a convenient way to cause "Pickle protected costly medicaid benificiaries" to fall off the lists of coverage. I predict this to be the outrage of the decade.
There is a quietly known Amendment known as the Pickle amendment which protects seniors from losing their medicaid coverage, mysteriously no politician has had the concern to mention it as of yet and this is why I am spreading the word as quickly as possible to alert disabled people and elderly/disabled people of their legally protected rights.
Anyone who ever received SSI in the past is to have any increase disregarded from any increase other automatic public retirement benefit which causes them to go over the Medicaid income limit. All disabled people are protected by this amendment and many who are over 60 and are medically needy on a regular basis which is almost everyone receiving Social Security. Make sure the Glitch has not caused you to be kicked off Medicaid. Go to the website, read the short law and if you lost Medicaid ask the case worker to check your eligibility for Pickle Protection and answer you in writing. This plan was by design and was not accidental!Medicare premiums and additionl costs not covered by Medicare Prescription Drug Plan D will which includes the big donut hole in the middle. Please spread the word. God Bless
John Corson
Below is the foremost expert on this subject and the document below will come up in web a search titled To Capture The wild Pickle
Joel R. Hayes, Jr. is a senior attorney with Colorado Legal Services, Inc., and may be reached at (303) 866-9385; [email protected]

If you find out that you are protected by the Pickle Amendment You also are not required to share in the costs of your plan. They will be paid by Medicaid Wrap Around Benefits. This is a Federal Amendment and applies to all states.
Contact your local Medicaid office or Medicare, to check your eligibility for Pickle Protection and have them answer you in writing of whether you are eligible or not and if you know that you are, appeal any negative decision. They will back down if it heads to a hearing because they do not want this to be the trial balloon that alerts the massive public of their protections. This plan was by design and was not accidental!Medicare premiums and additionl costs not covered by Medicare Prescription Drug Plan D will which includes the big donut hole in the middle. Please spread the word. God Bless
John Corson
Below is the foremost expert on this subject and the document below will come up in web a search titled To Capture The wild Pickle
Joel R. Hayes, Jr. is a senior attorney with Colorado Legal Services, Inc., and may be reached at (303) 866-9385; [email protected]

Purely a personal opinion, but I'd view the above two comments as Google-induced spam, and suggest considering deleting them.

Although posting one's phone number suggests other possible responses, none of which I'd dream of suggesting.

There are several points in the original post that are inaccurate. It's apparent to me though that some of you may not want to really understand the Medicare Part D problem (don't get me wrong, there definitely is a problem).
This problem doesn't just affect seniors though.
I'm 28, and depend on medicare. I have for the last six years, which means I've been paying out of pocket for all of my meds up until now.

I didn't comment to debate though, I commented to let Hilzoy know that current legislation makes it illegal for *any* of the providers of Medicare Part D to disallow certain categories of drugs. One of those categories is "anti-convulsants" which contains many of the drugs used to treat epilepsy. I know this because one of the drugs I am on - Lyrica - is used to treat epilepsy (I take it to counteract some of the "restless" side effects attributed to long term dialysis).
I only bring this up to point out that there are some safe-guards installed.
Also, the benefit is not that confusing at all. What is confusing, is finding a plan that covers your drugs. But even that is not overly difficult, as http://www.medicare.gov has a utility that will find all the plans in your area that cover your drugs, and will sort them by price (estimated annual cost).
It's really not that difficult - this coming from someone who relies on this help. Otherwise I have months like this one, where I can't fill all of my prescriptions due to my inability to afford them.
Bush is not responsible for this, though he had a part.
Your congressman/woman is responsible, and that means that at least in part, each one of us is responsible for not making our desires and opinions known to our representatives.

As the legislative assistant on health for one of our Members of the U.S. House of Representatives, I get to see upclose, what a shame we are for the rest of the world. How is it that the nation with the greatest state of the art medical technology, the largest pharmaceutical industry and the largest number of uninsured and underinsured persons, does not provide health care for all? On top of that, I too have to wonder what would happen if I was in the shoes of so many who are suffering. Oh, by the way, president, they too are tax payers, they too helped to build and rebuild parts of this country as did their forefathers, and a lot of them, although immigrants, contribute labor, taxes and a lot of resources to this country. Yet, we cannot provide a decent program of health care for our citizens, without first trying to make "the most profit off disease". Well, that is some kind of "family values, and moral values".
I too was diagnosed with a seizure disorder when I turned 24. As I rode on the favorite street car in San Francisco after a long day in school, I woke up on an empty street car, with the ambulance parked on the side while the paramedics were hovering over me, explaining that I just had a "seizure". As a pre-med student, I figured they had lost their mind; long story short, I suffered from menstrual seizures (yes, once a month I seized - either one seizure or four or eleven, all in one day and then my hell was over until the next month). While the doctors tried every anti-epileptic in sight, all combinations possible, some which put me back in the hospital simply because my body did not like them, and my liver hated them, finally dilantin was the answer. The only answer, after my seizures had stopped suddenly for 3 months in a row after 10 years of frustration ( during the 10 years dilantin did not work, go figure). During those 10 years, I too lost my license, dropped out of medical school because studying became impossible, became dependent on family and friends, since the doctors never actually saw me have a seizure but they always wanted to know "what happens when you seize". The most horrible feeling you can have is that you pass out, wake up and do not remember what happened and sometimes take a few seconds before you remember your own name. How about your child's name, when they stand next to you and say "mommy, you just had a seizure". What about your husband, while he comforts you while he feels so helpless inside? What would I do? I cannot imagine being told that my medication was not available. I don't know how many days it would take, and I do not want to find out. By the grace of God have I been able to continue my studies in Public Health, and become very successful in my public health career. However, the fear of seizing is always there, wherefore I try very diligently to take my meds.
President Bush, have you ever been on medication, Vice-President Cheney, as sick as you are, as many times as you have been near death, one foot in the grave constantly, how would you feel if you could not get your meds. If you really want to be a part of the people, maybe you should place yourself in their shoes and "relate to them" the real way. Maybe that will change the legislation from a for-profit law, that only suits the pharmaceutical companies and puts plenty of more money in your pockets and that of your friends, to a system, where both citizens, pharmacists, small business pharmacies and the giants can still get paid. More importantly, maybe then, you will improve the quality of life for a lot of citizens who have worked tirelessly to provide for their families and their country. Just maybe, Mr. President, just maybe.

Subj: Re: The Pickle Amendment Law to save many disabled seniors from the Glitch!! 1/4 to 1/2 of retired disabled people are currently eligible and do not even know it!! The Glitch was an intentional testing of the system to see who had resources they could come up with!! We can send you actual documents to actual laws if you want us to attach documents. please take a moment to read how many disabled peolpe can be protected if we let the Pickle Out of The Jar!!

Virtually anyone who ever received SSI or won an SSI Disability case and remains disabled and has lost Medicaid coverage by any publicly entitled retirement benefit that causes the income limits to be exceeded, is eligible to retain Medicaid if their net income is below $818 after basic allowable Living expense deductions. This especially relates to (RSDI) benefits which are known as Survivors or Widowers or divorced Spouses or (DAC) Disabled Adult Children. Enclosed within this Email is important information that will lead you to the Social Security Online Website to the Pickle Amendment. There are legal definitions of the Pickle Amendment by the top "Pickle" experts in the country. We believe that the Glitch was intentional, all the evidence adds up!
It is our mission as Advocates for the Poor and Disabled and Homeless to help out as much as possible. Most people who believe they understand the Pickle amendment usually refer to it as a deduction of Cost of Living Increases that cause a person to go over the gross or net income limits. The truth is that the amendment has had several revisions. The revisions are the meat of the law and have the most effect. The original amendment and its subsequent explanations have a lot of Gobble Dee Gook! Keep in mind that many laws are carefully written to be evasive and vague in an effort to enlighten the few as opposed to the many. Afterall we have to allow the affluential as many loopholes as possible so that we can pay attorneys to help us with them. Most advocates are becoming shocked that an obvious loophole exists for only those that are aware of it. In other words "Don't Ask, Don't Tell. Afterall we would not want our senior citizens ramrodding through the doors of City Hall.demanding their rights. Please feel free to ask any questions, maybe this can help you or friends of yours as well. We have already tested the waters here and challenged a regional District Office in Pennsylvania who swore up and down that they never heard of it. They backed down before the hearing because we knew that it could turn into a case precedent and then the Pickle Really Would Be Out of The Jar, and the whistle blowers would be out in full force. Your website is very informative and well thought out, and I really believe people will be thrilled to investigate if they are protected. It really is a tragedy gaining great momentum. I am very sure that your site would gain a terrific increase in traffic if you host some or all of the information, or explain in much simpler terms. The important thing is that people be directed to Online Social Security website to the actual laws I referenced. Many people will follow through because they need a ray of hope in their depths of despair that has been caused by their inabilty to cope with the unbelievable rising costs of health care.
I'll spend as much time as it takes to help you help others.
We are a private group of legally intuitive non profit advocates for the homeless, poor and disabled and we have been at the birth of many movements to enable those less fortunate than ourselves. Terry Spence
Butler PA

Who Let the Pickle out of the Jar
In Simpler Terms
Even if you are not Pickle Protected, or never won a disability case, you may be eligible for Medicaid because of your net income. Their are many different methods of being Medicaid eligible.
If you received Medicaid until 1/1/06 and were told that you will no longer be covered by Medicaid because of Medicare Part D drug benefits, you have been harmed by the Glitch. You are still Medicaid eligible for medical services not covered by Medicare D including all Medicare premiums Part A and B. This is referred to as wrap around costs. The Glitch that caused a problem has only just begun to snowball out of control. Wait until the drug providers begin to refuse the necessary medicines and treatments that were traditionally covered by Medicaid.
If you believe that you are, or may be Pickle Eligible then you must contact the office of Public assistance and tell them you want your eligibility checked. If you ever won a disability claim, your are, no doubt, protected from any raise in income that was automatically created by any raise that occurred which was caused by any Social Security pay increase. This also includes automatic Cost of Living Increases which happen every year. Do not let anyone confuse you on this issue because very few case workers understand how these rules apply. The last SSI related monthly benefit amount received before the benefit level increase, is the amount that the Medicaid office must use in calculating income. The last month of SSI you received is the "Frozen" amount.
For Instance if you have a husband who dies and you automatically become eligible for Widower's Survivor benefits, which cause your benefit level to go over the gross income limit of $1097 or even the net amount of $667 for elderly or disabled, the entire increase must be disregarded when determining your income if it causes you to lose Medicaid coverage. This has happened to many, many people over the years who lost their spouse and their Social Security benefits automatically transferred to RSDI (Retirement Survivor Disability Insurance)and their benefits increased automatically. It can go up hundreds of dollars on that single increase.
Regardless of being a former SSI recipient, and regardless of Pickle Protection, if your net income (income after allowable expenses ) is $425 or less after rent, mortgage, heat related utility bills, property taxes and home insurance, and necessary transportation and medical bills paid for by you including over the counter medications as well as behind the counter (paid for by you medicines). Then you are Medicaid Eligible.
You have countable assets, excluding cars or home in the amount of $2000 or less, If you are 65 or older, and have been judged disabled for SSI purposes at any age, and your gross income does not exceed $1097 and your net income after allowable living expenses does not exceed $667 you are eligible for full Medicaid wrap around benefit coverage (you are Categorically Needy). If you have never been judged disabled but are over 60 with age related health problems, your net income must fall below $425. If so, you are considered Medically Needy. You will also be covered with full medicaid wrap around coverage.
The Glitch has caused many (who have disappeared from the Pickle list)(yes there really is a Pickle list maintained by the Social Security Administration) to have to prove their Medicaid eligibility all over again because of the flawed implementation of Medicare D prescription drug coverage. It is a list that is kept private and quiet. Only Social workers are allowed to view it and it is filled with errors and inaccuracies. If you are eligible they are supposed to put you on the Pickle list. Yet, this does not always happen. It is very common and it is estimated that one third to one half of retired people are eligible for the protection but are unaware of it.
In more Detailed Terms
The Pickle Amendment went into law in 1977 and has been subsequently revised to add more protections over the years, is named after a Congressman named Pickle. It is a protection to keep people from losing medicaid coverage when receiving any automatic raise in any Social Security Benefit which puts the person over the allowable income limits, gross and net. And the increase causes them to lose Medicaid coverage. Anyone who ever originally won a SSI disability claim is considered by the Social Security Administration to have received SSI even if they never saw a check that indicated it was an SSI check. Because a disabled recipient of any Social Security benefit receives an initial Settlement claim which is SSI supplemented by earnings record Social Security benefits. Most people's earnings record would enable them to receive a certain portion plus the standard SSI Benefit Rate (BFR) at the time of the date of winning their SSI claim. There are very few exceptions to this standard of application. Most anyone who became disabled before the age of retirement is automatically Pickle protected if an increase in any Social Security benefit income causes them to fall out of the income limits of eligibility for Medicaid. The Net Monthly Income is $667 for a SSI disabled person and $425 net income per month for a Medically Needy person aged 60 or older (give or take a few dollars difference from state to state.) If they are in need of special, continued medical care, they are considered belonging to an SSI related category. The Social Security Administration has acknowledged that, age, in itself, can be disabling.
These rules are Federal and Medicaid is a Federally subsidized benefit and cannot differ in application from state to state.The Gross monthly income limit is currently $1097). Deductions from the gross are allowed for rent, mortgage, utility bills, property taxes, home insurance taxes, medical bills paid or unpaid and owed by the applicant, and any costs relating to transportation of a disabled person for a vehicle needed and used for the purpose of their transportation to and from medical services (except car insurance and car payments.) The net income limit after allowable deductions is $667 for a person who won an SSI disability case after 1977 and remains disabled. For a medically needy person who never received SSI, the net income limit is $425. It is all based on your standard of need. Having bills usually will help you more than hurt you when it comes to Medicaid (and foodstamps for that matter). As you can see, many retirees can easily qualify just deducting their mortgage, rent, utility bills (Standard Utility Allowance of $400 a month if heat is a part of the utility bill is allowed.
Nowadays, with people's busy schedules, many people buy their own foods and prepare their meals separately and this greatly affects their income guideline eligibilty. If either spouse is disabled you can declare separate Households and the Medicaid department must allow your separable determined expenses and income when equating the allowable deductions if one or more persons can be considered disabled because of needed additional care. Because of the grouping of two individuals there is hardly any additional allowable income for the second party. If possible, it can become necessary to declare separate households based on one person in the couple with a disabilty. If no person has ever been declared disabled by SSI, but could be considered disabled as an aged person in need of special attention, they should apply because it will allow more income and deductions. In fact, it would treat each individual as a single separate household. If it is necessary to pick the bills that each person will pay as separate households, you can do so. When determining Medicaid eligibilty, most people are unaware of these allowable special circumstances.
Many casewokers will not tell applicants, may not know of them, or will be dishonest in order to contain costs. Until this recent change in Medicare Part D, many did not understand the awaiting time bomb, just waiting to blow away their Medicaid coverage. But Medicaid is is still here. It was always meant to be a backup emergency provider for the low income, aged or disabled. It will pay all premiums and medically necessary benefits left uncovered by Medicare.
We contend, that the "Glitch was predictable 16 months ago. It has already caused a huge data loss from the Pickle list. We believe it is a test to see how many people can actually help pay for their own medical costs or get family contributions to help with their care. Many will have to forgo the care needed because they have no choice and are unaware of their Pickle eligibility. Somehow, the government believes this will save them money. Our research has indicated that it will explode the costs of health care because it will worsen the severity of medical conditions of the disabled and elderly who will seek additional medical care for worsening conditions caused by the lack of proper care.
But the good news is that nothing has really changed in regard to the eligibilty guidelines regarding Medicaid. The only change that have occurred is that they seemed to have lost the crucial Pickle Eligibilty list, now forcing these Pickle Eligibles to not understand the loss of their Pickle Protections. Most will suffer the consequences. We are aware of many Federally Mandated notices that were supposed to have informed Duel Eligible people of their status that most claim they either did not receive or did not understand. People caught up in this Glitch need to be made aware that they should not lose Medicaid coverage and many should be made aware that they may be eligible for Medicaid coverage who are not aware.
We are all for a Medicare system that really does help all seniors and disabled people, however we cannot allow those most in need to suffer what we often refer to in advocacy circles as the "Final Solution". There are no simple solutions to complex problems but there are simple ways to help people understand the problems and the solutions. At every level of local government in every State their are rules concerning the Pickle protections currently in place. A word search on each state's online Medicaid manual will refer to the Pickle Amendment. Anyone who just lost Medicaid coverage on 1/1/06 can reclaim their eligibility, if they appeal their decision and claim their belief that they are Pickle eligible and are within the income guidelines. The must have assets below $2000 for one $3000 for 2 people. A car of any value (for use by a disabled person) is exempt or vehicles of less than around $6000 total book market resale value . A house is exempt and everything that can be considered a household item, which is just about anything in the house except cash or expensive resellable jewelry.
The actual reference to this law is posted on the Social Security Online website and it is referenced below.
SI 01715.015 Special Groups of Former SSI Recipients
A. BACKGROUND
Categorical Medicaid eligibility for the aged, blind and disabled is directly related to receipt of SSI in most States. Loss of SSI payments can result in loss of Medicaid coverage.
To preserve Medicaid coverage for certain groups of individuals who lose SSI payments, Congress enacted special Medicaid continuation provisions. These provisions require the State Medicaid agencies to continue to consider specified groups of former SSI beneficiaries as SSI beneficiaries for Medicaid purposes, as long as they would otherwise be eligible for SSI payments. In addition, Medicaid agencies are required to determine if the individual would be eligible for Medicaid under any other group.
B. POLICY - CONTINUATION GROUPS
1. Section 1619 Eligibles
Individuals who are utilizing the section 1619(b) work incentive provision do not receive SSI payments. In order to continue Medicaid eligibility, section 1619(b) participants are deemed by law to be receiving an SSI payment for Medicaid purposes.
Congress also added a special rule for section 1619(a) and (b) participants in 209(b) States. If an individual received Medicaid coverage the month before the most recent period of participation in section 1619 (a or b) began in the 209(b) State, the State must continue coverage so long as the individual continues to be eligible under section 1619. This applies even when the 209(b) State has a more restrictive definition of disability than that of the SSI program.
SSA notifies the States about members of this group through the State data exchange (SDX).
(NOTE: The NMI does not receive the SDX.)
REMINDER: SSA promotes use of the SSI work incentives. If an FO discovers that a section 1619 participant does not have Medicaid coverage, and there is no Medicaid bar on the SSR (i.e., in 1634 States, the individual has no Medicaid qualifying trust, has agreed to the assignment of rights and to provide third party liability information), the FO should either contact the Medicaid agency by telephone or prepare a note for the beneficiary to take to the Medicaid agency.
EXAMPLE: The FO discovers that a section 1619(b) participant is not receiving Medicaid. There is no bar to Medicaid receipt on the SSR. The FO prepares a note to the Medicaid State agency about the individual which:
Contains an explanation of the relationship of the 1619 work incentive to Medicaid using the paragraph “How it applies” on page 48 of the June 1991 edition of the “Red Book on Work Incentives” in 1634 States or SSI Criteria States. In 209(b) States, the FO could use the following sentence instead of the last one in “How it applies”:
“People in 209(b) States continue to be eligible for Medicaid under the section 1619 work incentive as long as they were eligible for Medicaid in the month before they became eligible for section 1619.”
Explains that the individual is currently participating in the section 1619 work incentive; and
Shows what date the most recent period of section 1619 participation began.
2. Title II COLA (“Pickle Amendment”)
Effective July 1, 1977, Medicaid eligibility was protected for SSI recipients who lost SSI or SSP eligibility because of title II cost-of-living adjustments (COLAs).
Under section 503 of Public Law 94-566, the “Pickle Amendment,” title II beneficiaries who would continue to receive SSI/SSP payments (or would continue to be eligible for benefits under section 1619(b)) but for their title II COLAs continue to be considered SSI recipients for Medicaid purposes. If an individual's other income would not have precluded continuing SSI payments (or deemed payments under section 1619) without the title II COLAs, the State must continue to consider the individual to be an SSI recipient for Medicaid purposes.
When a State agency computes Pickle eligibility it uses the current SSI Federal benefit rate (FBR) plus any SSP and compares it with the beneficiary's other countable income plus the title II benefit “frozen” at the amount when SSI/SSP payment eligibility was lost without the current or subsequent COLAs after April 1977. If the FBR keeps going up as it has, the FBR can eventually overtake an individual's frozen title II plus other countable income level. Below are three examples of situations when Pickle applies:
Other Income - If an SSI recipient had title II and other income which resulted in loss of SSI, increases in the SSI FBR or a decrease in the other income can result in eligibility for Medicaid continuation under the Pickle amendment.
Windfall Offset - Windfall offset cases that receive SSI payment first and then lose SSI eligibility are like cases with other income. Rises in the SSI FBR can eventually overtake the frozen title II “yardstick”.
Reduced SSP - Several States (e.g., California, Michigan, Vermont) have reduced some optional supplementation levels. These reductions have caused SSI/SSP ineligibility for some recipients with other income. When the other income consists of at least some title II benefits, there is or will be potential Pickle eligibility as inflation increases the FBR.
SSA informs all States annually about potential members of this group at COLA time - each State gets two separate files to help them locate potential eligibles. SSI recipients who go into payment status EØ1 because of COLA's are also potential members of this group.
3. “ARF Widow(er)s”
In 1983, Congress amended title II and eliminated the Additional Reduction Factor (ARF) for widow(er)s younger than age 60 (disabled widow(er)s, DWB's). This increased title II benefits for some widow(er)s causing SSI ineligibility.
Congress added section 1634(b) of the Act to require the States to continue to consider widow(er)s otherwise eligible for SSI payments to be SSI recipients for Medicaid purposes if they:
Were entitled to title II in December 1983;
Received DWB benefits and SSI in January 1984;
Lost SSI payment eligibility because of the change in the ARF; and
Filed for Medicaid with their State agency by July 1, 1988.
SSA produced tapes and listings of these individuals for State use.
4. Disabled Adult Children (Childhood Disability Beneficiaries)
Section 1634(c) of the Act requires States to consider title II childhood disability beneficiaries (also known as disabled adult children, DACs, or childhood disability beneficiaries, CDBs) who lose SSI eligibility as if they were still SSI recipients for Medicaid purposes so long as they would have remained otherwise eligible for SSI benefits but for their entitlement to (or increase in) title II benefits on or after July 1, 1987.
SSA notifies the 1634 States about members of this group through the SDX. Starting on or about May 1995, members of this group in all States will get special Medicaid referral notice paragraphs numbers 1140 and 1141 (NL 00804.110 <http://policy.ssa.gov/poms.nsf/lnx/0900804110>) in their automated Notices of Planned Action when:
they lose SSI eligibility due to excess income in a month of title II entitlement; and
they are at least age 18; and
the SSI computer record reflects title II continuing income with a Beneficiary Identification Code (BIC) of “C”.
5. Widow(er)s
a. Background and Eligibility
In the Omnibus Budget Reconciliation Act of 1990 (OBRA '90), Congress permanently revised the special, more restrictive disability standard for DWBs to the disability standard that applies to all title II and title XVI adult disability claimants.
Effective January 1, 1991, section 1634(d) of the Act was amended so that any former SSI eligible widow(er) who:
Would continue to be eligible for SSI benefits or SSP but for their title II benefits;
Received an SSI/SSP benefit the month before their title II payments began; and
Is not entitled to Medicare Part A,
will be considered by the State to be an SSI/SSP recipient for Medicaid purposes until they become entitled to Medicare Part A.
This provision does not “sunset;” it is permanent. SSA notifies members of this group as they become ineligible for federally-administered payments due to excess income and notifies the 1634 States as these cases occur through the SDX.
Widow(er)s in all States get special Medicaid referral notice paragraphs 1142 and 1144 (NL 00804.110 <http://policy.ssa.gov/poms.nsf/lnx/0900804110>) in their automated Notice of Planned Action when:
they lose SSI eligibility due to excess income in a month of title II entitlement; and
they have continuing title II income with a BIC of “D” or “W” ; and
they are not entitled to Medicare Part A.
NOTE: From July 1, 1988 through December 31, 1990, section 1634(d) of the Act provided that the States would continue to consider otherwise eligible widow(er)s at least age 60 but not yet 65 as SSI recipients for Medicaid purposes if they became ineligible because of their title II benefits. Medicaid would continue for members of this group until they became entitled to Medicare Part A. This provision was superseded by the OBRA '90 provision.
b. Counting Medicare Months
As explained in HI 00801.154 <http://policy.ssa.gov/poms.nsf/lnx/0600801154>, when a former SSI recipient is found entitled to DWB benefits, all months on the SSI rolls at any time are credited concurrently against the 5-month disability waiting period and 24-month Medicare qualifying period. The months counted go from the first month of any (including prorated) payment to the month of DWB entitlement. All months are counted, including months of nonpayment, suspension and termination for any reason. Since the Disability Determination Services adopt the SSI medical decision for these cases, a DWB who received as little as one payment from SSI more than two years ago and meets the nondisability entitlement factors can become entitled to title II and Medicare Part A with no waiting period.
c. Informing the States
SSA notifies the 1634 States via the SDX when widow(er)s age 50 but not yet 65 lose SSI because of income in a month of entitlement to continuing title II benefits with a BIC of “D” or “W”. Since Medicaid continuation on this basis ends when Medicare Part A begins, States check their monthly beneficiary data exchange (BENDEX) listings or use third party queries to determine which widow(er)s are entitled to Medicare.
State employees may use the Third Party Query (TPQY) System or BENDEX to determine if or when widow(er)s are entitled to Medicare. States may also contact SSA FO's for this information. When requested, FO's should provide assistance by checking the MBR for Medicare Part A entitlement. If the MBR shows no Part A entitlement, a review of the SSI folder or SSI queries could reveal months to be credited towards the waiting and qualifying periods.
If no SSI folder is available, and the State needs more specific information, a Stored, Terminated and Lacking Eligibility (STALE) query is obtained.
6. Suspended/Terminated Drug Addicts and Alcoholics
Congress added paragraph 1634(e) to the Act to continue Medicaid eligibility for certain suspended and terminated substance addicts.
Suspensions
SSI recipients whose eligibility for benefits is based on a finding that drug addiction and/or alcoholism (DAA) is material to their disability who refuse to comply with or progress in treatment have their benefits suspended for noncompliance. Effective March 1, 1995, suspension for noncompliance (N1O) continues through a required period of demonstrated compliance (N11).
Congress amended the Social Security Act effective March 1, 1995 to require the States to continue to consider suspended DAA beneficiaries (DAABs) to be SSI recipients for Medicaid purposes if the sole reason for suspension is noncompliance or demonstrating compliance after a suspension for noncompliance.
Terminations
The SSI DAA provision contains a “cap” of 36 months of SSI benefits through September 2004. Section 1634(e) of the Act requires the States starting March 1998 to continue to consider DAABs terminated after receiving 36 months of SSI benefits to be SSI recipients for Medicaid if the sole reason for SSI ineligibility is having received 36 months of benefits and they continue to meet all other SSI eligibility criteria.
This provision does not apply to terminations after 12 months of suspension. Also, SSI on the basis of DAA is terminated after completion of 36 months of title II benefits when treatment was available on the basis of DAA regardless of how many months of SSI have been paid.

In Simpler Terms Pickle Screening Test
A Quick Screening for
Medicaid Eligibility Under the Pickle Amendment

The Pickle Amendment requires that an individual is to be deemed an SSI recipient (which in many states means automatic Medicaid eligibility) if he or she:
Is currently receiving Social Security Benefits but initially won a SSI disability claim that changed to a different higher paying benefit issued by the Social Security Administration.
The screening involves the following steps:
Step 1: Ask the person, “Are you now receiving a social security check?” If the answer is no, the individual cannot be Pickle eligible. If the answer is yes, go on to the next step.
Step 2: Ask the individual, “What is the last month in which you received SSI before the increase in Benefit level?
Step 3 If the amount received in that month was less than $667, you will be automatically Pickle Eligible.

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