Guide to Disability Claims

0 (6s):
is The Bill as amended is passed. The President and Vice President on the road promoting the American Rescue Plan to people all across the country. And it expands healthcare coverage and lowers healthcare costs for so many people. The strategic plan includes four major components, improving fundamental knowledge, developing diagnostics, characterizing therapies, and developing safe and effective vaccines. If a hundred people with disabling MS made claims and the insurance industry denied all hundred, some percentage are going to give up and just walk away.

Terry Wilcox (46s):
When chronic conditions prevent you from working, filing a disability claim with your insurer is the next step. But what happens if that claim is denied? That's up next. Welcome to the Patients Rising Podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising a hundred thousand members strong organization of patients with chronic illness. I'm joined by my cohost who's been blasting Taylor Swift on repeat ever since the grant, have you really? He's Dr. Bob Goldberg, Co-founder of the Center for Medicine in the Public Interest.

Dr. Bob Goldgerg (1m 22s):
Let me state at the outset that once again, I mean, I love our producers, but they know that I'm a Cardi B and Megan Thee Stallion guy, nothing against Taylor Swift, but you know, Megan Thee Stallion and NUS, that's me.

Terry Wilcox (1m 36s):
Bob, I've known you a long time now. I don't believe you.

Dr. Bob Goldgerg (1m 41s):
Okay. All right, fine. We'll see. You'll see. Well listen, when we're not updating our Spotify list and I assure you, Megan Thee Stallion is in it, we're keeping tabs on the health policy debates taking place in the halls of Congress, and there's a lot of them after this American Recovery Act was passed, and we'll be here and have been here every Friday to report about what's happening. These policies have major impacts on accessibility and affordability of healthcare for millions of Americans living with chronic illness.

Terry Wilcox (2m 16s):
Well, this week we're looking at a policy area that impacts thousands of patients, but it's something that not everyone knows about, or even quite understands. The Employee Retirement Income Security Act, otherwise known as ERISA, and that's E R I S A is the acronym, protects employer sponsored health insurance plans from state restrictions. ERISA was included in our Patients Rising pro patient agenda that we sent right to Congress earlier this year, as soon as they were sworn into office. And the reason why we are so insistent on making sure lawmakers know about this is insurers often hide behind it as a way to avoid state regulations, which can leave many patients at the mercy of unfair copay accumulator programs, step therapy, prior authorizations, and many other access challenges.

Terry Wilcox (3m 4s):
ERISA also deals with any disability claims that you or a family member might file with your insurer.

Dr. Bob Goldgerg (3m 11s):
Right, Terry, and for many patients with disabilities, the big question is what if your claim gets denied, then what happens? Where do you go from there? So while we're looking at disability claims specifically, many patients with chronic illnesses should be aware of what early conversations they should be having with their employer and what medical documentation they need. And this is ultimately to protect yourself and set yourself up to have a better chance of winning a disability claim if that does come to pass.

Terry Wilcox (3m 44s):
Now to help us understand ERISA and the role it plays between employer sponsored insurance and patients, this week I spoke with ERISA lawyer, Glen Kantor. He's the founding partner at Kantor and Kantor. They are well-known disability lawyers based in California. Now Glenn not only gave some really helpful advice for patients in terms of documenting their condition at their place of employment, but he also highlighted areas of ERISA that patient advocates should bring up with their representatives.

Dr. Bob Goldgerg (4m 14s):
Of course, and the ultimate goal is to ensure that patients have a fair fight in the legal system when disputing their claims and can get accessible coverage for the conditions. Terry's interview will be up shortly, but first here are this week's healthcare news headlines.

Robert Johnson (4m 33s):
In your health news, as the world races to vaccinate as many people as possible against COVID-19, there's a new focus on Britain's approach, giving one shot of a two dose vaccine while delaying the second so more people could get at least some protection from the Coronavirus. Today, it looks like the plan is working as the number of new virus cases has fallen more than 90% since peaking in early January. Many European countries over the last several days have pulled back on the AstraZeneca vaccine over fears that it causes blood clots. But now, the drug regulator says the formula is safe. The number of clots reported was very small with no confirmation the vaccine caused them.

Robert Johnson (5m 16s):
After the pause, worried nations now are planning to resume their vaccine programs. President Biden's nominee for HHS Secretary, Xavier Becerra, won narrow confirmation this week in the US Senate. The vote was 50 to 49, the closest margin for any Biden cabinet member approved so far. Finally, a group of House Republicans want the National Institute of Health to investigate the origins of the Coronavirus, saying such a review would be of paramount importance to public health and biosecurity. Next week, the World Health Organization is set to release a report resulting from an international mission it sent to Wuhan, China last month. That's your health news update for this week, I'm Robert Johnson.

Terry Wilcox (6m 3s):
This week, we're introducing a new segment called The Last Word. Each time our friends at the Institute for Clinical and Economic Review, otherwise known as ICER, release a final report, we will post our last word blog at accessandaffordability.org, as well as have a brief interview with Dr. Langley on his final take of the report. They recently released their final evidence report on several new therapies for cholesterol and their policy recommendations could have huge ramifications for high cholesterol patients attempting to access these new treatments. To help us to understand the report and what it means for patients, we're joined by Dr.

Terry Wilcox (6m 44s):
Paul Langley. Now Dr. Langley, as a professional health economist and adjunct professor at the University of Minnesota, you've long been a critic of the way in which the Institute for Clinical and Economic Review, otherwise known to our audience as ICER, arrives at its recommendations for pricing and access. Now, why is this?

Dr. Paul Langley (7m 5s):
It's because they failed the standards of normal science. They are developing simulations which have no credible claims and none of their claims can be evaluated. Essentially, it's pseudo science. It lacks the required analytical standards. And to put it briefly, it's nonsensical.

Terry Wilcox (7m 23s):
Now why do you think given all of that, this has been accepted?

Dr. Paul Langley (7m 28s):
It's been accepted because it's their business model. They rely upon an audience in Medicaid, Medicare, other government agencies, such as veterans affairs, health insurers, and health systems to believe what they say. The majority of that audience lack the forensic skills to recognize the limitations on assumption driven imaginary simulations.

Terry Wilcox (7m 54s):
Now a few days ago, ICER released its final evidence report on therapies for high cholesterol. Do you believe the same criticisms apply here?

Dr. Paul Langley (8m 3s):
Yes, in spades and not just for this report, but for their earlier report and recommendations for PCSK 9 inhibitors. Both evidence reports are not to be too gentle about it, a complete sham, as far as the modeling and recommendations for pricing and access are concerned. Unfortunately, they are believed by those who should know better, both in pharmaceutical manufacturing companies and by health system decision-makers

Terry Wilcox (8m 35s):
Do you believe that patients have been adversely affected by this?

Dr. Paul Langley (8m 40s):
Undoubtedly patients have been adversely affected, although known as yet evaluated the cost to patients and their caregivers of ICER's recommendations. ICER has over the past 10 years, much to account for in recommendations that lacks scientific merit and have potentially adversely impacted patients and caregivers.

Terry Wilcox (9m 4s):
What do you consider the major shortcomings of ICER's overall approach?

Dr. Paul Langley (9m 9s):
In one sentence, the complete lack of understanding of the scientific method. We need progress in discovering new facts about the impact of new therapies, a point which is actually made obvious in the ICER report, where they admit to limited clinical data to support therapy impact in high cholesterol. Although they go on regardless, the lack of evidence has never stopped ICER making recommendations. So rather than proposing a research program to discover new facts in high cholesterol patients, they recycle assumptions and literally invent evidence to support formulary decisions.

Dr. Paul Langley (9m 52s):
The lack of high quality clinical and other evidence has never deterred ICER from inventing evidence. Unfortunately, there are a lot of people who support ICER. This is the approach taken in health technology assessment over the past 30 years.

Terry Wilcox (10m 10s):
This is the biggest area for us, is what about the patient and caregivers, there any place for that in their methodology? I know they give a lot of lip service to it, but does it actually pan out that way in their reports?

Dr. Paul Langley (10m 21s):
No, the quality of life concept that ICER supports, the utility school, is purely clinical. It's judged by clinicians. It's assessed by a community sample. Nowhere does the patient have a voice which is relevant and taken into account by ICER. It's no good talking about health-related quality of life defined in terms of clinical symptoms, because these symptoms or the possible improvement, may have no relevance to the patient. The clinician might feel that the patient has improved, but the patient may not feel they've improved at all.

Dr. Paul Langley (11m 3s):
In other words, I see our neglects completely, the patient voice. The question is whether patients needs are satisfied and not by how much with new therapies, clinical symptoms may be irrelevant and any way should be considered separately. And indeed we have multiple measures of needs fulfillment focused on both patients and caregivers. These have been around for 20, 25 years and they have been used in multiple occasions in multiple countries, but ICER seems blissfully unaware of these measures. In fact, the scores that I see ICER use to capture utilities, seem designed to minimize the patient voice.

Dr. Paul Langley (11m 47s):
They have five symptoms and three levels. If few of those are relevant to patients, then any improvement of quality of life will be minimal. So I see a loads the game against the patient and the caregiver.

Terry Wilcox (12m 2s):
So, we're launching our blog on the patient access and affordability project website today. It can be found at accessandaffordability.org. As the last word, Dr. Langley, what is your overall response to this high cholesterol report?

Dr. Paul Langley (12m 19s):
Find a shredder.

Terry Wilcox (12m 22s):
There you go. You had it right there folks. That is the last word from Dr. Paul Langley. Thank you very much.

Dr. Paul Langley (12m 28s):
You're very welcome. Thank you.

Terry Wilcox (12m 37s):
Thank you, Dr. Langley. We have more details in the show notes regarding ICER's high cholesterol review, as well as the link to the blog at accessandaffordability.org. So be sure to check those out. So one of the things that's happening coming up, our favorite folks in Boston, they're going to be reviewing lupus medications. They just came out with their draft evidence report, which is their final report before the meeting, I believe.

Dr. Bob Goldgerg (13m 2s):
Kidney deterioration as a result of lupus, yeah.

Terry Wilcox (13m 5s):
Exactly. So they're saying so far that they think the cost will be within their thresholds, but how do we know what the costs are? I mean, do we know what the costs are?

Dr. Bob Goldgerg (13m 16s):
Listen, they are a highly political organization. Their business model is changing. They're getting more of their money from pharma and they are under pressure to show that they aren't, you know, especially with lupus nephritis, which there is a greater risk of it in African-American, Hispanic, they're very, very careful not to portray themselves as blocking access during time when health equity and health disparities are a very important issue front and center. So there were a lot of weasel words in it. I do know, just from our conversations with the people that the companies themselves and some of the advocates were very pleased with the results.

Dr. Bob Goldgerg (13m 56s):
Time will tell. I haven't dove into it as much again, because there's no consistency with what ICER does. For example, in the upcoming myeloma study, they estimate based upon the price of the drug, how many people could have access to the drug based upon their budget limit. Well, in the ICER report for lupus, they didn't say anything about budget limit.

Terry Wilcox (14m 16s):
Yeah. It's in some reports, the budget impact section is very prime. And then in others, they sort of bow out of that for reasons that you and I have discussed.

Dr. Bob Goldgerg (14m 27s):
Yeah. And again, I just think that ICER is all over the place. They don't use the same methods for establishing qualys. It really is a systematic subjectivity, which of course, which is what a qualy is in any event. Qualy does not come down from Mount Sinai. And they're in. So the bottom line is people won't complain and they like ICER if they'd like the results.

Terry Wilcox (14m 50s):
Well, exactly. Now, Bob, when it comes to healthcare legislation, one bill in particular has made some huge waves. President Biden signed the American Rescue Plan into law, a massive $1.9 trillion Bill that provides support to vaccine distribution, public health measures, and a slew of other health issues. But for our listeners, there are several line items that we want to dive into that will really shape affordability and accessibility of healthcare for chronic disease patients. What did you read? I know you and I talked a little bit about this prior to the show, you kind of really looked in at how this was going to affect patients.

Dr. Bob Goldgerg (15m 30s):
Yeah, well, I think the two major changes, the first one is that if you lost your job because of COVID or any other reason, and you're on Cobra, the government will provide subsidies income based to pay for those premiums. That's number one. Number two, they've raised the income level for individuals and for households to be eligible for subsidies to reduce the monthly premiums and exchange plans. So the new legislation allows people, I think up to $150,000 a year, to claim a portion of the credit with the goal of maintaining, basically making sure that people don't pay more than 8.5% of their income in premiums.

Dr. Bob Goldgerg (16m 19s):
That's a major expansion of the Affordable Care Act that is supposed to expire, but you know, the conversations on the Hill suggest that both the Cobra proposal initiative and the increased enhanced subsidies will try to be made permanent. The other thing that they did is that they expanded the Federal match to Medicaid programs that have expanded access to individuals under the ACA, not every state has done it, but they've increased the Federal match. They boosted another 5% to bolster participation in that program as well.

Terry Wilcox (16m 55s):
That's pretty huge because it used to be for a family of four it was roughly a hundred, what did we determine $104,000 a year was the threshold, 400% of the poverty line.

Dr. Bob Goldgerg (17m 7s):
And that, which is, you know, for a family of four is like a $100,000, but now there's really no cap on the subsidies. I mean, in the sense that there will be some modifications based upon income level, but you will get some kind of tax credit.

Terry Wilcox (17m 21s):
If you go into the exchange is what you're saying?

Dr. Bob Goldgerg (17m 23s):
Yes.

Terry Wilcox (17m 23s):
So even if Warren Buffet went into the exchange, do you think he would get something?

Dr. Bob Goldgerg (17m 28s):
Well, he's Warren Buffet.

Terry Wilcox (17m 29s):
Well, I know, I mean, he doesn't need the exchange, but I'm just talking about like.

Dr. Bob Goldgerg (17m 32s):
No, I'm saying he would figure out a way to get it. No, I think he would actually.

Terry Wilcox (17m 36s):
Yes.

Dr. Bob Goldgerg (17m 37s):
He gets Medicare just like I do.

Terry Wilcox (17m 40s):
Yeah, but even Medicare has, I mean, don't, you pay more based on what your income level is in Medicare even. I mean, it's not just free.

Dr. Bob Goldgerg (17m 47s):
Yes, that's right, so like your part B premiums and your part D premiums are income adjusted, means tested so to speak. Whereas, the new expansion, there really is no cap or a much higher cap on tax credits for people under the new bill.

Terry Wilcox (18m 5s):
Well, so in addition to what we are talking about with the Cobra expansion and the subsidy expansion for ACA plans, there's additional funding, I think we read for tele-health, yes?

Dr. Bob Goldgerg (18m 18s):
Yes, for telehealth. What's happened there is that the waivers that allow doctors to send in to be covered for tele-health from out of state, still stay in place, there's still payments for that, and then they extend the waivers which allowed doctors to treat patients and then send bills later as well. So again, I think everything that they've set forth, you know, are pretty much things that they want to make permanent. And obviously there's additional money for COVID testing, vaccine distribution, they're buying more vaccines, some additional mental health block grants.

Terry Wilcox (18m 54s):
So there is quite a bit of help. I mean the big talking point coming out of this is that 9% of the bill has to do with COVID, but I'm assuming that means specifically with vaccine purchasing, distribution, allocation, et cetera, not all of these things that we're talking about here.

Dr. Bob Goldgerg (19m 11s):
Correct. Right. And by the way, I just want to clarify one thing about the tax credit. So for two years, people that are above 400% of the federal poverty level on a sliding scale are eligible for credits and anyone between a hundred and 150% of the federal poverty level, they get their premiums covered a hundred percent. And then people with incomes above 400% of the poverty level will have their premiums capped at 8.5% of their income with the credits on the sliding scale.

Terry Wilcox (19m 42s):
That's interesting. Maybe we can come up with a little chart for that. I bet we could put that up because that would kind of help people visualize. So one of the things that we talked about this week on my interview with Glenn Kantor was we really dove into a ERISA and not the pension part of ERISA because there's two separate parts, which, you know, but we really talked about how it relates to employer health benefits and how this can impact obviously patients with chronic disease. We talked about disability claims that they may need to file at work. Anyway, we covered many broad topics in this space and we talk about ERISA all the time, but I feel like we haven't really had an interview that dives into the explanation of what it does.

Terry Wilcox (20m 29s):
Here is my interview with Glenn Kantor. He's the founding partner at Kantor and Kantor. We have a great in-depth discussion about ERISA law and what patients should know. So welcome Glenn. Thank you for joining us today.

Glenn Kantor (20m 43s):
My pleasure.

Terry Wilcox (20m 44s):
From an ERISA standpoint, what are the major issues that come up, you said individual as well as classes. Now I know some of the groups, at least from looking at your website and talking to some folks on your staff, lupus, MS, chronic fatigue syndrome, those are some of the larger groups of patients that you've represented. What are the major issues that come up for them?

Glenn Kantor (21m 8s):
I run our disability and life section, and as far as disability goes, I'm there to help people who are trying to get their disability benefits paid and often they have chronic conditions. MS, lupus, it can be a severe back condition that's so painful they can't work. And if you're asking what are the troubles they run into? Now I could speak on that for hours. Typically, it's the insurance company says we are not satisfied that the objective evidence you've presented to us convinces us that you can't work. What's really going on, and this could take a while to explain, is that they use ERISA as a sword and a shield.

Glenn Kantor (21m 54s):
What I mean by that is before the Supreme Court of the United States took on its first really important ERISA case in 19, I think it was 89, the Supreme Court said, yes ERISA was really a pension statute, but it also encompasses other employee benefits such as employer provided health, life and disability. So if you have a dispute or a lawsuit about your employer provided benefits, it's not governed by your state law. And if you're like in California, where you have wonderful remedies that you can sue for extra contractual, damages, pain, and suffering, and even punitive damages under a ERISA, you can only sue for really one thing, which is the benefits you're owed.

Glenn Kantor (22m 43s):
And you can also get sometimes discretionary attorney's fees. So the carriers to then this be a wonderful weapon because you know, it's hard to find lawyers there often isn't a huge amount of money at issue. And without the threat of punitive damages or extra contractual damages insurance companies could deny claims left and right with impunity, I don't have data. There's no hard data, but I would tell people if a hundred people with disabling MS made claims and the insurance industry denied all hundred, some percentage are going to give up and just walk away. And the insurance company has won that percentage right then.

Glenn Kantor (23m 25s):
Under ERISA, before you can file a lawsuit, you are obligated to ask the insurance company to reconsider the denial and you only have 180 days to do it. And the typical lay person will not know what it is they're supposed to do, or they won't do it timely, or they won't know how to get their doctor to help and they'll do it on their own. And the insurance company will then deny it again. First, many people will do nothing. Another percentage, 10, 15, will give up, they don't want to find a lawyer. They think they can't afford one, not knowing that most lawyers who do this, do it on contingency. And so they'll give up. So now you've got another percentage of people who have just walked away.

Glenn Kantor (24m 9s):
And then you've got to find a lawyer for the ones who don't. And the lawyer like myself may look at it and said, Oh wow. You know, I don't think your case is winnable anymore because of the way you handled your own appeal. You should've come to me to do the appeal. But even if we say, yep, you know, you did a good enough job, or it's a strong enough case, we'll take it on. And we'll litigate before you get to a trial. The court is going to mandate that you try and settle the case. And if the insurance company would have owed you over time, let's call it $200,000. And they offer the insured 150. And we say, you know, you have a tough judge.

Glenn Kantor (24m 50s):
She's on the conservative side. You might want to consider taking this. And often the case is settled for less than full value. Once in a while, maybe five out of a hundred or less, we go to trial and win and the insurer gets everything they should. But you know, this is a long process. And if you look at the data, the disability carriers know full well that if they just deny, deny, deny

Terry Wilcox (25m 15s):
Oh yeah. I mean, you're going to lose patients each time through that denial process. I mean, I've always said that there's a great business model in there. I mean, 50% of people who are denied, not even just for these larger things or disability benefits, but overall just like don't really do anything immediately or if ever, I mean, it's an easy thing. It's a business model that works. And so therefore the denial is always to be expected.

Glenn Kantor (25m 40s):
Absolutely. Now we see less of them of people walking away in the disability area because this is their lifeline to keeping a roof over their head and food on their table. In the health arena, it's much worse. You know, if somebody ends up with a thousand dollar medical bill that is completely valid, but it's denied, how many people are going to go try and find a lawyer over that, or their insurance company says, we're not paying for that medication, we'll give you the generic. You don't like it, sue us. You know, nobody's going to sue and the insurance companies know it and they take advantage of it.

Terry Wilcox (26m 18s):
In this day and age we've shifted many, many companies have shifted away from the pension. So the actual pension part of that is not even necessarily as large a deal as it was in 1974. We've moved more to 401ks and other things. Is there still a great need for ERISA in that context?

Glenn Kantor (26m 39s):
I think there still is a need for ERISA to protect pensions because there is a pension deficit in this country, which is mind boggling that so many pensions are underfunded, but for the most part, you know, here, we're not dealing so much with pensions as the expansion of ERISA into the everyday health, life, and disability, not the a hundred billion dollar issue of the IBM pension plan, but a hundred thousand dollar issue of Jane Doe who has MS, cognitive deficits, severe fatigue and the insurance company says, well, just because you have MS doesn't mean you can't work.

Glenn Kantor (27m 19s):
Oh, you're a NIC unit nurse and you're taking care of critical care infants. it's okay. We're not worried about that, baby. You can go ahead and work. That's the kind of thing that I see. And that's where, as I said, ERISA is a problem. So your listeners understand ERISA exempts government workers. Government workers are never governed by a ERISA, but they do get the same benefits often. They get health insurance and disability insurance, and typically government entities such as, you know, school districts or cities will go out and purchase group insurance for their employees. And if an insurance company denies one of them, in California, we sue for bad faith and we've recovered multiples of the amount of money the insurance company has denied because of the bad faith.

Glenn Kantor (28m 12s):
And so the insurance companies have to be much more careful about when they deny non ERISA governed benefits, but with a ERISA, they can basically kind of thumb their nose at you and say, okay, yeah, we've denied it. We're in litigation, but you have to understand you might lose. So we expect you to take in settlement less than the value of your case. And not only that, there's other things about ERISA which nobody understands or the lay people don't.

Terry Wilcox (28m 40s):
I really would love to get, you know, your top three or four tips for things that patients who either become disabled or may have a disability going into a work situation needs to think about or know regarding ERISA and regarding their employment and what they need to document or look for. Are there things that you can give us like that?

Glenn Kantor (29m 4s):
Absolutely. The first thing that comes to mind is if you have a condition such as MS or Lupus or a really bad back, don't keep it a secret from your employer. You don't have to spread it around to your coworkers, but you need to at least tell your supervisor and HR if you're struggling, because if you're fired one day, you know, I've had clients five years of great work performance and great work reviews, and then everything goes downhill and they get terminated. Well, the reason they were terminated is because their chronic condition flared. It could be MS. It could be Lupus, whatever, but if they haven't told the employer, the insurance company will say, you're just saying this because you got fired and you want us to be your unemployment insurance company.

Glenn Kantor (29m 54s):
Well, it's not true. But if you hide that fact from your employer, it's hard for us to use it against the insurance company. The other thing is don't hide things from your doctor. People go in, this is just anecdotal from reading claim files and reading medical records, the doctor says, well, how are you? Well, I'm fine. I'm doing okay. Because people are, are strong and they're brave. But in reality, they need to be telling their doctors the truth. You know, I'm here because I'm fatigued, having cognitive issues, or the pain is so bad that I get home at night and just collapse. I can't take care of my family.

Glenn Kantor (30m 34s):
I'm having to take narcotics to get through the day at work and it's affecting me. So don't keep secrets from your doctor or from your employer that could result in you're not going to make a successful disability claim. The next thing is, if you do need to make a claim, consult with an experienced ERISA lawyer. I get calls all the time from people and I'll tell them, you know what, hearing your story, you probably don't need me. Go ahead, make your own claim, and if there's a problem, call me. But if somebody has been denied and they say, well, I'm thinking about doing my own appeal.

Glenn Kantor (31m 15s):
I'll tell them, you know, just be careful. I'm happy to advise you, kind of give you some suggestions, but if you don't do it right, you can sink your case. And if you do find a lawyer, make sure they don't dabble ERISA. Find a lawyer who does it on a pretty much a full-time basis.

Terry Wilcox (31m 34s):
You've given advice to our patient audience out there. We have a lot of advocates. We're actually training right now in our masterclass advocacy training program, almost 80 advocates across 30 States. And we're trying to educate them across the board on a variety of really interesting topics and ERISA is one of them because it's something that affects a lot of patients out there. So if you were talking to patient advocates, what would you suggest? How can they talk to their representatives about ERISA? What can be done to make it more pro patient?

Glenn Kantor (32m 9s):
Well, one thing in particular, if you're talking about advocates who are advocating in Washington, D C with Congress, is to amend a ERISA to eliminate what is called discretionary review. In 1988, the Supreme Court was faced with a question of deciding when a judge looks at a denial of a claim governed by ERISA, what standard of review do they use?Because just as a quick aside, remember, ERISA cases are always decided by judges. Juries are not allowed. In fact, in most cases, witnesses aren't even allowed. They just look at the, the medical records.

Glenn Kantor (32m 49s):
That's all the judges look at. But anyway, the Supreme Court was asked to look at the standard of review and there's really two standards. One is de novo, which means the judge just weighs the evidence. Does the plaintiff have better evidence? Or is it the defendant? Is the person disabled or aren't they? And that's the appropriate standard. But Supreme court said, that's the fallback standard because the statute doesn't talk about it so we will apply de novo. And here comes the caveat. Unless the benefit plan, which is often that the insurance policy, gives the decider of who pays the benefits, either the administrator or the insurance company, discretion to decide benefits.

Glenn Kantor (33m 34s):
If they have given themselves discretion, then we will only reverse it if it's really unreasonable, if there's no basis at all for the decision they made. So you can imagine what happened in 1989, is that all of the benefit plans and the insurance companies said, well, look at this, we can give ourselves discretion. And they started to do it across the country. Every self-funded plan, every insured plan, they all started putting discretionary language in their documents.

Terry Wilcox (34m 5s):
Wow. That would be huge getting rid of that then.

Glenn Kantor (34m 7s):
Right. About 15 years ago, there was a movement in many of the States to ban discretionary clauses in insurance policies issued in various States. I was very deeply involved in California. We had a very sympathetic insurance commissioner at the time, and we got a bill passed almost unanimously. Bi-partisan just no opposition in our state legislature and it went to the governor, Governor Schwarzenegger at the time, and he vetoed it saying this isn't necessary. He was completely wrong. We came back the next year. Once again, got a hundred percent support in the legislature and it passed again.

Glenn Kantor (34m 49s):
But this time our new Governor Jerry Brown signed it, and there was a change in litigation because now the discretionary ban is in place and all new denials are required by the courts to be looked at De novo. So it's fair. You know, we talk about the insurance companies have their thumb on the scale when they're making decisions and the judge allowed it, but under De novo, they just weigh the evidence. A study was once done that the insurance company or the plan win 75% of the cases, if it's arbitrary and capricious, but the plaintiffs win 75%, if it's De novo. That tells you how important it is.

Glenn Kantor (35m 30s):
So if Congress would just say, we're not going to allow insurance companies to have discretion, we're going to make them go to the same standards as anybody else, if they're right, they win. If they're wrong, they lose. That's what results from a De novo standard. So tell your advocates, that's what they should be pushing in Congress. Here's another advocacy point that your folks might mind me talking about. Congress has passed and President signed into law, it's called the Mental Health Parity Act, sets that under in health insurance or health benefits plans, can't discriminate against mental illnesses. If they provide a benefit for surgery, they have to provide basically an equal benefit if somebody is mentally ill.

Glenn Kantor (36m 17s):
And that's great. However, in the disability insurance context, that is not the case. So it is almost uniform that disability insurance policies limit mental health benefits to two years. So somebody who is schizophrenic and going to end up homeless unless they get benefits, will get two years of benefits along with a bad back might get benefits for 20 years. Now I'm not denigrating the person with a bad back. They need benefits, but the person with schizophrenia probably needs it more.

Terry Wilcox (36m 53s):
And this is another thing, when you get down to benefit design and you have to weigh. I mean, there's so much to weigh in these situations like this. I can understand the pushback when something is, you know, it looks like an expensive avalanche could come your way from a business standpoint. I do get that, but it's where you need to sit down, I think, and think about how you can design the benefit and work with public and private sector folks to make these benefits a reality for people like this, because you're right. Somebody who's schizophrenic only being able to get mental health benefits for two years. It just doesn't pair out. As we might say.

Glenn Kantor (37m 30s):
Right. And you know, this is a case where the employer who does want to provide quality benefits to their employees, doesn't always understand what it is they're buying. You'll have company A who might charge a dollar less a month per employee than company B. But in reality company B is offering far better benefits. Company A may have all kinds of conditions, which it limits the two years, chronic fatigue, fibromyalgia. They've called them neuro musculoskeletal conditions are limited to two years. What is a neuro musculoskeletal condition?

Glenn Kantor (38m 12s):
I don't really know. I think it's anything that doesn't involve the blood, because just about everything involves your nerves, your muscles or your skeleton, but some companies will put in limitations so that anything that's not going to kill you within two years, they stopped paying within two years. And large employers, if they would talk to a lawyer like me and ask me, what are the provisions we should be looking to? I could tell them in five minutes, but in my, I started my practice in 1992, I've never had that call from an employer. In fact, I haven't had an agent come in to sell insurance to me and I asked the questions. Does this have discretion? I don't know what discretion is was the answer.

Glenn Kantor (38m 53s):
Oh, that doesn't matter. You don't have to care about that. Does mental health have limitations? Oh, why would they have limitations?

Terry Wilcox (38m 60s):
Oh, they don't really know. A lot of times those people coming in your office, trust me, from I mean, you can only imagine the number of horror stories I've heard.

Glenn Kantor (39m 9s):
Listen, I tell people, you know, you sound so negative about insurance companies. And my answer is that's because in 28 years, nobody's walked through my door and said, you know what? That insurance company was great. They paid my claim with no problem, will you please sue them? What I'm getting are the, the horror stories. And, you know, we do have to remember that they pay billions and billions of dollars of claims, but they deny billions and billions of dollars of claims. And you and I are hearing about the horror stories.

Terry Wilcox (39m 39s):
Well, I really appreciate your time today and for joining us. I think this will be a really interesting interview for a lot of our listeners and our patient advocates for sure. You know, ERISA is one of those complicated Rubik's cubes that we talk about a lot. And often we don't understand all the many sides of it. So I appreciate your explanation and some enlightenment on a few of those sides. And I hope you'll join us again.

Glenn Kantor (40m 3s):
I'd love to anytime.

Terry Wilcox (40m 11s):
This episode of the Patients Rising podcast is brought to you by Patients Rising Concierge, a new service from Patients Rising that helps patients and caregivers find the resources they need to find stability and support throughout their healthcare journey. From finding a professional advocate, to help with insurance challenges, to legal and tax counsel, to local caregiving resources and so much more, our team is standing by to help you navigate the healthcare system and connect you to the services you need. To learn more, visit patientsrisingconcierge.org, or email us at askusanything@patientsrising.org.

Dr. Bob Goldgerg (40m 55s):
Thank you for bringing us that interview, Terry. Up next, Patients Rising Field Correspondent, Kate Pecora brings us another patient story. Take a listen.

Kate Pecora (41m 9s):
So today I'm talking with Kaitlin Kerr who's been spreading awareness about social security administration restrictions that apply to marriage of people with disabilities. Kaitlin, it's great to talk to you today.

Kaitlin Kerr (41m 20s):
It's great to be talking to you too, Kate.

Kate Pecora (41m 22s):
Let's start out about talking about how you got to this point right now and realizing all of these challenges would eventually apply to you. So what are your diagnoses? How do they impact your daily life? And then eventually we'll get into how they impact your prospects of a married life.

Kaitlin Kerr (41m 39s):
So my diagnoses didn't "catch up to me" until I was in my early thirties. I had issues since birth and slowly accumulated diagnoses, but was not considered disabled by the government until my early thirties because I was still able to work. By diagnoses now that I found out over time, the best primary one is Ehlers-Danlos Syndrome and I have the hypermobile types. So that's a genetic connective tissue disorder, and it affects merely every body system, right? So the most basic summary of Ehlers-Danlos Syndrome or EDS is that due to faulty collage and production in the body, so your ligaments and tendons are too loose causing your joints to partially dislocate or dislocate that results in muscle spasms, pain, joint damage.

Kaitlin Kerr (42m 27s):
The primary thing that affects my life and my quality of life is pain. So I don't look disabled. I have what many refer to as an invisible disability, but I struggle with pain in a lot of body systems, but I got through it. I've had several other surgeries related to that, but I also have several autoimmune diseases. I have Rheumatoid Arthritis, Crohn's Disease, they suspect I have Lupus, but they kind of go back and forth on that one, and two things that often go with Ehlers-Danlos Syndrome, which are Mass Cell Activation Syndrome and Autonomic Dysfunction Dysautonomia, or Pots.

Kate Pecora (43m 6s):
Talk to me about, you know, how they begin to progress with the medical bills really piling up. And then with that, you know, that you had some very kind of enduring battles, right? That you were forced to spend any money that you were able to make on your healthcare services. And then eventually, you know, you reach a point where you're qualified for stuff like social security, insurance, and Medicaid. So this transition period is really difficult for a lot of people with disabilities and I want to know how that played into your life more recently.

Kaitlin Kerr (43m 36s):
Yeah. So as my health worsened, I completed degrees in English and Nursing and my Master's in Nursing. So if I use some medical terms that I don't explain, I apologize, so call me on it. I worked as a nurse first in orthotrauma and surgery, and later in oncology as a nurse manager and it was my passion and truly I miss it so much it hurts, but I was able to manage many of my body's idiosyncrasies until following a trip to Peru. I became severely ill with a parasite. And then after that, it was kind of like a, just avalanche of pain and injuries.

Kaitlin Kerr (44m 20s):
And my life after that point became a blur of pain, doctors, tests, procedures, and eventually having to leave my career entirely. And at that point, the diagnosis began to fall into place, but I was still very sick. I eventually had to sell my house. I lost most of my life savings on medical treatment. And I can go into this later, but eventually when I realized that Medicare wasn't enough to cover my expenses, and in fact didn't really make a difference in my expenses, once I qualified for social security disability, which in and of itself was a two and a half year process, I had to liquidate all my assets.

Kaitlin Kerr (45m 8s):
I had to divest myself of my retirement account, put it in a special needs trust. And that was the only way to qualify for the Medicaid program that I'm on, which is medical assistance for workers with disabilities. The reason that I am a worker or work is if I didn't work, which probably would be the most manageable thing for me right now, I still wouldn't have enough money to afford my medications and basic living expenses even though I share them with another person and I receive SSDI payments. So it's criminal, how much my medication costs are on a monthly basis.

Kaitlin Kerr (45m 49s):
They are in excess of what my mortgage was by probably twice.

Kate Pecora (45m 57s):
So you eventually reached a point where you and your partner, you want to be married, but social security has these penalties in your way that make marriage a real pitfall for your economic and your financial situation. Right. So can you explain how this all works, right? Like what is taken away from you when you would decide to go get married and how would those things being taken away from you impact your life?

Kaitlin Kerr (46m 21s):
Yes. So at one point we thought we'd just be able to, you know, have a ceremony and simply not get legally married. And that's usually the first question people ask us, right? Why don't you just have a wedding and not get legally married? But there is legal precedent of a history of people losing benefits simply because they appear to be married. We now know that if we even shared a picture of a commitment ceremony, you know, picture of rings, introduced ourselves as husband and wife or acted as married. The legal term is holding out for any purpose, I could lose my health care. And some people risk these things.

Kaitlin Kerr (47m 0s):
The penalties are very inconsistently enforced. So you will see people doing this, but you will also see people who do this and lose everything or are forced to divorce. Right? So what that essentially amounts to is that even if a disabled person and their partner are not legally married, and this is out in the open on the SSA website, if "evidence exists" to the contrary that the couple may be holding out as married, they, the couple, their friends, their family can be interviewed to determine if they're acting like they're married. So if it's determined that they are, the disabled person stands to lose any and all health insurance benefits from the government and SSA employees are actually instructed to obtain physical evidence of holding out if it's suspected in order to prove that this couple is trying to evade the marriage penalties.

Kaitlin Kerr (47m 55s):
So it seems impossible to miss how essentially immoral this is and the invasions into disabled people's lives. And it's very inconsistent. They affect some disabled people, not others. And some people will say like, Oh, I know disabled people who got married or I'm disabled. I got married. And, you know, like I said, it affects different types of disability in different programs differently. So if someone receives SSDI for example on their parents' work record, as opposed to on their own, marriage will affect them differently than someone who just has SSDI and nothing else. The penalties also affect someone on SSI differently than someone on SSDI, and so on.

Kaitlin Kerr (48m 37s):
So the range of effects varies. And in some cases, marriage would just result in a lower monthly check. If someone just receives SSI as monetary payment. And in other cases, it can trigger loss of health care benefits or insurance, which for many, is far more damaging than the loss of monthly income and healthcare for people like myself, which is a majority of people who are disabled, who live at or near the poverty line, it's not adjusting case insurance policy, it's necessity to live. So the strict regulations are pretty outdated. The income limits and the asset caps have not been raised since 1984.

Kate Pecora (49m 16s):
So while he was on the campaign trail, Joe Biden, he recognized this as a problem for the disability community and a lot of other, you know, people who are on Democratic ticket also did. And so he made this quasi commitment to working with SSI to change their rules. You know, I say quasi because it was very limited right. In what he would say, and it wasn't like a complete overhaul of the program. So how could this reform potentially benefit you and why doesn't it go quite far enough?

Kaitlin Kerr (49m 47s):
I think it's not so much a question of not going far enough, but of not having all the information. So this is a complex issue, as I've said before, and it's crucial for legislators to have disabled people of diverse backgrounds and on different government programs and in different financial situations, working with them on this legislation. As we've seen, you know, more clearly than ever in the past year behind so many other isms flies classism. And if we don't consider, include, and even center those with the least financial means in making our laws, they will necessarily be discriminatory by nature and their benefits will be inaccessible.

Kaitlin Kerr (50m 33s):
So that being said, President Joe Biden has written into his platform, the goal to reform the SSI program so it doesn't limit beneficiaries freedom to marry, save, or live where they choose. And his website says that he will work with Congress and the disability community to do that and raise the asset limits. However, what his platform does not address is those living as the adult disabled children on SSDI or receiving SSDI on their parents' work record. And they're basically once they get married, they become the burden of their spouse, quote, unquote, as opposed to the burden of their parents. And I would have had the privilege if I were just on SSDI because it was on my own record, of marrying if I so chose, that's not affected by spousal income.

Kaitlin Kerr (51m 19s):
This group of people would still not be able to get married under Biden's current platform. I am only hopeful that this administration will tackle the issue if they have comprehensive and correct information backed by real life stories of disabled people. And this will only happen if we make our voices heard. And like I said before, like that's a risk for some people to say, because they are afraid of being called or seen as holding out as married, but we need to make our voices heard and we need allies and disabled people are tired. We're so tired. We need other people to work with us to help realize some of these basic human rights so many of us have long gone without such as the freedom to save money, the freedom to afford basic medications and treatments, and the freedom to have the human right of marriage if we so choose.

Terry Wilcox (52m 16s):
Thank you, Kate. Now it's that time of the show where we get to hear directly from members of the Patients Rising community. Here is this week's patient correspondent.

Megan Claire (52m 28s):
I'm Megan Claire, a breast cancer survivor from the Sixth Congressional District of Georgia. I want the health insurance industry to lower the age for preventative tests like mammograms. I was diagnosed with stage two, an invasive lobular breast cancer two months after my 39th birthday. Why should women have to wait until they're 40 before giving a mammogram? I am one of the many people who were diagnosed with cancer under the age of 40. These age parameters are outdated and need to be changed, or you've been denied a multitude of tests even after my cancer diagnosis, because I am still considered too young.

Megan Claire (53m 13s):
My breast cancer treatments rapidly age my body. More importantly, my cancer has made me more susceptible to other illnesses, potentially another type of cancer. I truly feel that once a person has a cancer diagnosis, any, and every test their medical team orders should be approved and covered.

Dr. Bob Goldgerg (53m 40s):
Hearing your stories and we want to highlight even more of you right here on the podcast. So you can become a patient correspondent by sending an email to me and Terry at podcast@patientsrising.org that is podcast@patientsrising.org

Terry Wilcox (53m 56s):
As always, thank you so much for joining us for today's episode. If you have just a few seconds, we'd love it if you could leave us a rating and a review. This helps us reach more listeners and allows us to continue bringing you the latest in health news.

Dr. Bob Goldgerg (54m 9s):
And don't forget to follow the Patients Rising podcast on your favorite app. You'll get the latest episodes delivered right to your phone.

Terry Wilcox (54m 17s):
We'll be back next week with another new episode. Until then for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox, keep your distance and stay healthy.