Severe Hep-C is a condition that will usually qualify an individual for Social Security Insurance. Individuals on Social Security for disability purposes qualify for Legacy Medicaid. In most states individuals who qualify for Legacy Medicaid based on disability status will have streamlined or auto enrollment in a variety of safety net programs (heating assistance, housing assistance, SNAP, some job training programs etc). The logic behind this auto-enrollment is to streamline cases where there is a very high probability that if a person is on SSI, they will qualify for everything else and that as a class, most of the people are “deserving poor” so politically it is easy.
This program logic was built out with an assumption that most people won’t get better, that they’ll just (at best) stay stable or decline slower.
Now with the creation of highly effective but expensive Hep-C cures, this logic does not work anymore.
People who were originally Medicaid qualified as part of SSI received a Hep-C cure. These individuals then follow three pathways. The first is that they are non-compliant and not cured so they still have Hep-C. The second is that they were medically compliant but their bodies did not take the cure so they still have Hep-C. Finally, they got cured. The first two groups are fairly simple from a policy point of view. The first group is still on Medicaid for SSI. They may or may not get another round of treatment depending on state policies. The second group is also simple. They are still on Medicaid through SSDI qualification. Once their doctors can figure out why the cure did not work, there is a very good chance that they’ll get another round of something slightly different to see if that works.
It is the third group which is an interesting policy challenge. They are cured. A good proportion of this universe now no longer has a medical disability according to Social Security. Some of these people will have comorbidities that will re-qualify them for Medicaid through SSI. A decent number of people won’t requalify for SSI or Medicaid through SSI. Their support structure that they previously auto-qualified for is now based on individual application qualification. Some of these people will re-qualify for Medicaid Expansion or other Legacy qualification categories. States would prefer that these individuals qualify for Medicaid as Expansion category individuals as the Feds take up 100% of current costs and over the long run take 90% of the costs. Any other qualification has the state picking up between 30% to 50% of the costs.
So the question is how do people who were previously assumed to be very long term SSI recipients who are now cured and losing their qualification for Medicaid and other wrap around services transitioned? Is there a slow off-ramp with plenty of assistance on navigating the system or is it a brick wall?
craigie
Wait. In what way is this post about Trump?
Gin & Tonic
@craigie: Duh. He said “brick wall.”
Punchy
Rich, I have a soccer question….can I ask it here?
Why, when looking at the premier division for Romania (or whatever they call it), do the 3 bottom teams have such negative points? How does a team/league get/give negative points?
Big R
Brick wall. Qualification for social services in this country is binary. You should know that by now.
amygdala
This reminds me of the early years of combination antiretroviral therapy for HIV, in the late-to-mid 90s. It became clear, within a year or so of PIs being approved by FDA, that the so-called Lazarus effect of patients who were so near the end that we making hospice referrals and advising them to get their affairs in order wasn’t rare.
A lot of those patients had Medicare-Medicaid, and as they got healthier, faced the loss of one or both parts of their coverage. Or put another way, they were going to lose access to the very drugs that had saved them.
This being California, it got straightened out fairly quickly. But the whipsaw between the hope of ARVs and desperation of no longer being able to afford them was vertigo-inducing and horrible.
DY
Just a point of clarification…Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits are two separate programs. SSDI payments are usually about $1100 or so, SSI payments are $700 or so, and SSDI beneficiaries that are enrolled in Medicare, SSI beneficiaries are enrolled in Medicaid.
Both programs are administered by the Social Security Administration. Financially, beneficiaries are entitled to SSDI if they worked a sufficient number of quarter periods in the last ten years (e.g. 20 quarters out of 40), because by working (and paying Social Security taxes) the person becomes “insured” under the program. Otherwise, if the person is not SSDI eligible, they can receive SSI so long as they meet an requirement for ownership of assets (e.g. I think its like $6000 or so). This matters partly because the funds come from different pots of money from the federal government.
Regarding medical eligibility, the requirements for SSDI and SSI benefits are the same: an individual must have a “severe” condition that lasts or is expected to last at least 12 months that impairs their ability to work in past jobs and any job in the national economy. This last step trips up many people, because especially if you are young or have any significant education, SSA will always say that you can work at a desk as a “bench worker” or some such BS. And, the impairments cannot be the result of drug or alcohol use (thanks to ’96 welfare reform).
As you write, a Hep C patient with a sufficiently severe condition, however, may “Meet a Listing”, which is a sort of shortcut in the evaluation process where a person’s medical records demonstrate certain symptoms/conditions such that the person is clearly disabled. However, as to the first group you discuss, if the patient is not compliant with medical treatment, that alone may be grounds for denying a patient disability benefits in the first place — although I am not sure if that would be sufficient to kick someone off benefits once they are on. It is much easier to stay on disability benefits than it is to get benefits in the first place: the standard for staying on is more lenient, and SSA (reportedly) barely conducts ongoing reviews of medical records to ensure that beneficiaries are still disabled (they are supposed to happen every 3 to 4 years, word is that they happen at best every 6 or 7). For the “third group” who becomes cured, they will likewise probably stay on disability benefits so long as SSA doesn’t actively determine that they are no longer disabled. Other conditions are likely to keep the individual qualified if they continue to pursue treatment (and thus build medical records).
The actual reason people are likely to fall off benefits is that they will return to work, thereby paying taxes and potentially notifying the agency they are back at work. Unfortunately, SSA is not very good about turning off benefits when they should (you don’t lose disability benefits immediately, they have “trial work months” to help individuals attempt to transition back to work without losing everything). Its a problem not because when SSA does figure out that an individual is no longer qualified, they impose an overpayment and demand repayment, sometimes years later, and for tens of thousands of dollars. That’s another story though…
Major Major Major Major
Interesting, very interesting. I mean, upsetting, but as a policy issue this is very interesting.
Richard Mayhew
@DY: will update shortly
Eric U.
the brick wall problem is something we should work on. But I don’t hold out a lot of hope for the near future.
piratedan
@Punchy: Punchy, when a team violates certain league rules, they can be assessed a penalty in regards to negative points in league standings. Seen it done in some of the lower Brit and Scots leagues where say for example, a team signs someone without a work permit and plays them. Or even for some clubs, going into financial receivership, not paying their financial obligations… a team/club can be penalized that way as well. In other words, if you’re playing at the top, you should have your financial and labor houses in order.
Seanly
I have commented in the past about my wife’s ALL & blood stem cell transplant. She qualified for SSDI through the Compassionate Allowances program; her SSDI was approved in a couple of weeks. She’s been on it for a couple of years now which was long enough that she was automatically put on Medicare. However, she is covered by my insurance, CIGNA, who has a special program for transplant recipients. We declined the Medicare as we didn’t want co-insurance to mess things up or end up costing us more than already high out-of-pocket expenses.
SSDI does have a program for people who are trying to get back into the workforce. I don’t know if everyone qualifies for it. She is allowed to transition back to work over IIRC 54 months.
Once she started working she had to report income each month. She can continue to get her SSDI payment, but each month where she earns over $810 is counted. After 9 non-consecutive months over that threshold, she will no longer receive SSDI if her income exceeds $1130.
My wife has been back to work at a flex position for 3 months. Once she gets the 9 months over the threshold, then she won’t automatically get SSDI (though I’ve heard that most folks end up getting a month or two of grace).
She is finding that she can’t work a full 40 hours a week. After about January, we’d actually make the most money if she only worked 2 days a week – she’d get her pay and still draw her SSDI. That might actually work well with her energy level, but she likes her job and is willing to work more if she can. Since she’s flex she’s not working a set schedule – right now she’s getting most of her hours filling in for folks who are taking vacations.
Barbara
SSDI has been amended many times to try to transition people back into the work force, by continuing access to Medicare eligibility in some circumstances after a person has returned to work. This area of the law is unbelievably complex, partly because it gets tinkered with so often. But w/r/t Hep C, there is precedent for the impact of drugs on the disabling nature of the condition, because a positive HIV diagnosis was also considered to be automatically disabling, until it wasn’t anymore. My sense, backed up by a lot of statistics, is that once someone qualifies for SSDI it is very difficult to reverse course even when drugs are available to reverse the disabling nature of the disease. That’s why the back to work transitions were enacted. So what you would want to look at is the percentage of people who qualified for disability on the basis of HIV status in the 80s and 90s who are still considered to be disabled. My sense is that it is a lot higher than you might imagine.
Mark
Hep C will perhaps be one of the biggest killers of the boomers. I don’t have stats to back this up but suffice it to say there are many walking around with this virus that don’t even know they have it. It infects the liver and causes severe breakdown over the years without detection. At the age of 55 I went for my first real medicals due to my age found out I had been suffering from Hep C for close to 40 years. Luckily in Canada I was able to receive treatment at no cost. The cost can be $60,000 plus a year. Everyone should be checked and deal with it before it is too late.
Linnaeus
Thanks for this, Richard. This is of some concern to me because my father was diagnosed with hepatitis C in late 2014 (he likely got it through a blood transfusion he received while being treated for very serious injuries he sustained in an accident in 1976). He’s been treated for it and so far it looks like the infection has been cleared. I don’t know how the treatment was paid for or what comes next for him – he’s retired and on Medicare.
Roger Moore
@Seanly:
I’m glad to hear your wife is doing better. My impression is that her energy level will probably keep recovering for a while yet, and she may well feel up to full-time work sooner than you’d think. AFAIK, my recipient (AML) was back to full time within two or three years.
Seanly
@Roger Moore:
She also developed a lung infection that almost killed her* about 85 days post-transplant, induced coma, rehab, and then had to be hospitalized twice for C. diff before she made it home. She’s one tough SOB though.
*This is not hyperbole. The head of Vanderbilt’s MICU was probably a day or two away from discussing options with me. The chief transplant oncologist wanted to turn her immune system off again since the problem wasn’t the infection but rather the lungs’ response, but the rest of the team disagreed. The oncologist told me that they’d shot 5 rounds out the revolver and didn’t know if the last one would work – and he was the most positive person. Luckily, the drain for the lung biopsy relieved some pressure so they put a drain tub in the other lung.
Mnemosyne
@DY:
There probably needs to be a better system for determining what’s a permanent disability and what isn’t. One of the commenters here has a son who has been severely disabled from birth (I think it’s severe cerebral palsy) and can’t walk or speak, much less work. She has to certify every few years that he has not miraculously gotten better, which is kind of a pain in the ass for everyone, especially since the investigators seem to come in with an attitude that they’re going to prove he’s been faking the whole thing since birth.
amygdala
@Mnemosyne: The disability system, like work comp, is a mess–underfunded and full of opportunists who make bank at the expense of patients with serious problems and the credibility of the system as a whole. Sometimes people improve enough to be able to work part-time, but if they do, all of the things they rely on to keep a roof over their heads and in medical care, along with everything else, would go out the window.
It’s absurd that we can’t have a system that lets people who want to contribute do so, even “just” part-time, without consigning them to a refrigerator box.
Barbara
@amygdala: There are maximum income levels, absent a transition program. It is kind of crazy, but that’s just one more reason why universal coverage is such a good idea.
Mnemosyne
@amygdala:
I have to say, my two experiences with Workers Comp here in CA were really great, though it probably made it easier that I had an actual physical injury each time (carpal tunnels and torn ACL). It really was, Show up here and get your care without much hassle at all.
Trying to make a claim that’s harder to document (like back pain or mental illness) is still a giant pain, from what I understand. But once I had that X-Ray and exam right after the fall to document that I tore my ACL, I was in the system and it was easy to deal with.
RaflW
Curiously, I just had my annual wellness check at the Dr. this afternoon, and for the first time, a HepC blood test was suggested. The nurse (who looked to be a few years older than my 50 years) said it is now SOP for people 50+ to have it checked once, since we “probably made a few dumb choices in the 1960s.” I mentioned that I was 4 when the 60s ended.
amygdala
@Barbara: I think the ACA has helped, too. The thing that sucked for HIV patients who lost their Medicaid (and thus their medication coverage) is that they couldn’t get insuranceunless they were well enough to work or had a spouse with a great plan.
amygdala
@Mnemosyne: Jesus… CTS and an ACL? Yikes. Hope you’re all better.
And I think you hit the nail on the head. It works for well-defined illness/injury. OTOH, so does any system. One of my friends is back in the states after practicing in Canada for a few years. One of the things I want to ask her about is whether work comp (and post-military) care up there is all under HealthCanada, rather than being separate systems as they are here. Could be a way of increasing efficiency on this side of the border.