So stop-loss acts as this backstop but you know they don't want to spend any more than
they have to.
So sometimes when they see expensive treatments or expensive medications they'll threaten
to not cover it for an employer.
So that's called lasering.
And they be third-party administrator?
No, the third-party stop-loss.
So they are not connected to, so think of them as you know sort of a reinsurance product
for self-insured companies.
So they represent the company's ability to buy a level of coverage.
So for example a company might say per person we don't want to spend more than $10,000 in
medical expenses.
So once a person hits $10,000 then stop-loss kicks in and picks up.
Otherwise they might say we don't want to spend more than $500,000 or a million on all
medical claims.
So once you hit that you know pool whatever it is, $500,000 stop-loss then kicks in.
And with so many medications being expensive and not negotiated appropriately you start
to hit those pretty quickly.
And so stop-loss is paying too much from their point of view.
They'll come in and say wait a minute we're not going to cover Kevin's cancer treatment.
That's not what happened in his situation but we're not going to cover Kevin's you know
expensive cancer treatment.
So we're going to laser it out and he's on his own.
So and that may have happened to his plan earlier when before he joined and was diagnosed
because his PBM did say they had gotten hit with some expensive claims.
And even though they did not advise it the company had made the decision to eliminate
a lot of coverage for specific types of specialty medications.
Okay.
So stop-loss is basically the insurance that the private company purchases for their self-funded
plan.
Yeah.
In order to maintain their self-funded.
Now they're really big companies, J&J, they don't have it because they've got enough
assets but they also spend almost a billion dollars on healthcare last year.
Is it at all possible to kind of hold this or to the animal or to the other way or like
so?
Yeah.
Just so that my microphone is a little bit closer.
Like so?
Yeah.
Just something.
Yeah.
Just something.
It's looking too far away from here.
Okay.
Welcome with it.
Um, so it's hard to know where to start.
I was thinking to myself and I was like how do you explain the drug market?
And the simplest answer that I can come up with is add six more steps than you can imagine
and you're probably closer to the truth than you expect.
And you can check.
Yeah.
Okay.
Um, I guess how much of your story are you able to talk about, able to share?
I can talk about what's public.
Okay.
And I can certainly talk about what my job was and all of those pieces.
So, um, you know, that's, that's very open and I can certainly talk about some of the
labor issues.
I can't talk about the class action except for what's public.
Okay.
So, um, what was your job and to the extent that you can explain where you worked?
Yeah.
So I was a health policy and advocacy director.
I think the safest thing to say is for a major pharmaceutical manufacturer top three in the
country.
I worked in Wisconsin and Minnesota.
My job on paper was to help shape the conversation around drug pricing and policy.
Connect advocates with one another.
So they had more of a collective impact and inform them.
And that's a very specific term because compliance decided that educating them was beyond our
scope.
So informing them on the issues that the company cared about.
And to the extent you are able to share, um, what happened with you personally at the
company.
So I am a patient with a chronic illness.
When I started, it was singular.
It's complex and I was very open and honest about the fact that I had this condition and
it gave me a lot of passion for what I do, which is, you know, working to make medications,
especially complex medications more affordable for patients like me.
Um, I think one of the things to say is that their day on the job, the woman, the one woman
who had been on the team before my boss hired three women weren't me that he was sexist.
And one of my superpowers is observation.
So I observed three months later when he hired a man that he gave him a cash award called
an Inspire Award.
And I asked the other two women if he had done that for them, wondering because I came from
outside of the organization, if you just needed to be like inside or something like that.
And their response was no.
And so that was very early on.
It was about three months in.
And then I needed to go for an infusion.
And I put it all in, all of that.
And I got back and he told me he was not going to approve it for a sick time that I had to
recode it as personal time.
And I had done things like answer the phone and attended meeting while I was supposedly
out.
And I didn't actually have a clear time in attendance policy that I could reference.
So I asked the executive sponsors of the employee resource group, the Americans with
disabilities employee resource group.
And for larger companies, that's a group that you can join to have other people with the
same experience to communicate with.
So I had originally asked the leader of the group, hey, do managers get ADA training?
He's like, I don't know.
Let me ask.
And so I asked the questions and it was crickets.
And I felt that I needed an accommodation to move forward with this to have some structure
and predictability.
That process was incredibly painful.
We had people that we could chat with online.
No real contact for HR.
I actually got told in one message that this wasn't an HR issue.
And I was redirected to about five different places.
I finally got in touch with the right person.
My boss was displeased about my needing to go for an accommodation.
I'd actually had to connect with employee relations because I felt I was completely blocked
from accessing an accommodation.
They clarified that my boss's understanding of policy was incorrect.
And so they did an intervention with him.
And I filled out the paperwork with my primary care, got it in.
I was then told it wasn't signed by the right doctor.
Yeah.
So it had to be signed by the prescribing doctor, which I had asked originally if that was the case.
And the nurse said no.
But when she came back and told me it had been denied, she told me that her boss had taken
issue with the doctor being not the prescribing doctor.
So I fixed that.
And so that was November.
In December, I started getting really tired.
And I thought it was just a manifestation of my original autoimmune disease.
But I was in this incredible joint pain where I was not sleeping well.
I was just, I don't know how many people know when you're in chronic pain just how mind-numbing
and at the same time mind-overwhelming it is.
And so I was definitely not at my best.
Obviously, I didn't feel the company was taking care of me or allowing me to do what I needed
to do.
And then I became very stressed at feeling that there was something wrong but not knowing
what it was.
And as a patient who has had a disease that doesn't manifest very physically, I knew that
there's a lot of, a lot of gas lighting that occurs in the medical system.
You know, when people, particularly doctors, they're trained on evidence but they don't
trust or many of them don't trust the evidence that patients tell them about their bodies.
And so I did not seek care for about four more months until April.
Meanwhile, during my review, my boss told me I seemed unhappy at the company and that I could,
he could help me find a job elsewhere or back in nonprofit, which was very uncomfortable.
There were some other things that I can't prove, so I won't bring them up, but they were
threatening to me and my success.
And, but I do have evidence about the, about the back of nonprofit.
And so things just sort of continued to accumulate until I went out on medical leave.
And I had requested another accommodation, had it ready, prepared for, with the doctor
signature, tried to submit it on the day that I went on medical leave.
I was told they couldn't process it while I was on medical leave.
So three weeks later, when I was preparing to go back, I submitted it.
And I think the easiest way to say is all hell broke loose.
The nurse case manager who had had her own very bad experience with accommodation reached out to me
and said that there was a very legal ease paragraph that my boss had written essentially saying
he was not open to considering the accommodation.
I don't know how much of that is true because I haven't seen that email.
I tend to believe that she would be accurate.
And so I was not allowed to return to work after a medical leave.
And so it's actually been 18 months.
And the company I will say was very good.
They allowed me to access short-term disability at 100% pay for the first six months.
And then after that, it did make the decision that going on long-term disability was not the right choice for me
because it would limit my ultimate earning power.
And so I haven't been paid by them.
I've been trying to explore and find opportunities for pay, but it's difficult.
So after three weeks of medical leave, they said we won't let you come back to work, but we'll have you on.
So I continue to try to go back to work and there was a lot of confusion.
They actually reached out to my doctors without telling me and added additional restrictions to what was presented.
I had no idea.
And so I tried to correct it so then they were confused by the request, which makes sense.
Because if I don't know what they're talking about or speaking with my doctors about the naturally, it is very confusing.
I don't blame them.
And so I retained a lawyer and given that I actually developed full-blown anxiety attacks because of receiving phone calls for my doctors saying we've had someone so reach out, they don't have an appropriate HIPAA release.
What do we do?
I became extremely anxious.
And so in consultation with my doctors and lawyers, we decided that it was best for me to remain out of the workforce until they could resolve the accommodation issue.
And then what can you share about the lawsuit?
Yeah, so the class action, as part of my diligence as a patient, I wasn't sure that I wanted to get on their insurance.
My husband had very good insurance that had done us very well.
It was a local insurer.
So in January I called the company and I said,
what does getting on your insurance look like?
What's my cost going to be out of pocket?
All of this.
They said the cost for my infused drug would be $300.
I said, okay, that's very reasonable.
It's expensive for a lot of people.
I was making very good money at that time.
I thought that was a very reasonable request.
And I asked things like, am I going to need to go to a different location?
Oh, no, that's not part of the policy, et cetera, et cetera.
So a part of my job was to go to employer coalitions and listen to them and try to have G&J's perspective be heard there.
And so I started attending the Alliance here in town's meetings.
And the first meeting I went to was all about how the Consolidated Appropriations Act of 2021 formalized the fiduciary standards under the Employee Retirement Income Security Act or ARISA and how there needed to be reporting and how really all along there has been
a fiduciary standard that people who put together welfare plans, which that covers your 401K, your health plan, all of that, they're considered welfare plans under the IRS code and under the employee under ARISA.
And so they really had to be prudent in their purchasing.
So about three weeks later, I go to get my infusion and it's at a local hospital and I get the bill.
And I've already had kind of a run in with them.
I was like, this other bill was too expensive.
So I get the bill and the medication alone was billed at $98,000.
Now, a lot of patients will look at that and say that damn drug.
What I looked at and I said, well, that's funny because if I'm recalling correctly, the company originally priced it at $60,000 for a year.
So the medication is administered twice a year, so it should be close to like $30,000.
And I looked up what's called an average sales price file.
This is what CMS asks pharmaceutical companies to submit.
It's public domain.
And I learned that it was average sales price was about 35.
The company had allowed, I think at that point, $78,000.
So it was significantly more.
And what happens in the drug, particularly the infused drug situation is where you get your care is a huge driver of cost.
So because this was administered at an outpatient cancer clinic associated with a hospital, the billing was based on what's called a percent of charges.
So there's an agreed upon amount and typically, you know, the hospital can charge whatever they want, really.
And then they can allow, you know, a certain percent of that charges, which I'm sure we could figure out.
I don't have it off the top of my head.
Whereas a home infusion service may have a more specific amount that is agreed upon in advance rate that's usually capped.
We don't have home infusion services here in the Madison area.
I tried really hard to find some.
And then there's also an outpatient infusion center as sort of a standalone rather than affiliated with the health system.
And those have average sales price plus a margin to, you know, deal with the storage of the drug, you know, staff cost and all of that for ordering and prior authorizations.
That can run between six and 10% for really good contract is closer to 10, maybe 12.
So, I found a local infusion center here and they said that they could do the whole infusion for about $40,000.
And so we were looking at saving approximately half.
And I thought this was a good idea, particularly after hearing all of these things about, you know, fiduciary duty and standard imprudence and, you know, not having excessive charges in your health plan.
So I approached the health plan, a nurse case manager got ahold of me because I'm a complex patient. I have been sort of annoyed with them on their on their cost.
And I said, hey, listen, all I want at this point is to be able to have my in network benefits because I met my out of pocket.
Be applied to this out of network location so that I can save the plan roughly half of what is going on.
And long story short, the email I got back from that request essentially said saving money is not a reason to go out of network.
Now that was fine.
I, you know, raise some flags internally, but really didn't go anywhere.
So, as, as things sort of continued as, you know, my money situation changed and I continue to get hit with pretty high costs, I continue to think about the requirement that people act with duty and prudence and negotiations.
And a friend suggested that I seek out legal counsel and I did and they believe that I had a good case.
So we filed the first class action against an employer for breach of fiduciary duty.
So, to back up just a little bit.
Yep.
Once you, so before you switched health plans, what was your cost share?
We had a copay plan, so it was like $50.
When you would go in for an infusion.
And then when you switched to your employers, what did your cost share become?
It's 20% of the bill charges.
So part of the problem for patients is it's very unlikely.
The hospital purchased the drug at $98,000 or even 88, which was or 78 as the allowed amount.
The plan would never pay that.
And so, but my cost share was based on that really inflated price.
So in, I had a maximum amount of pocket of like $3,400, over $3,000.
Let's just say that.
So I had not had a ton of medical services.
So it was pretty close to like $2,000 to $3,000.
Okay.
And then once you hit that cap, you wouldn't have had to pay more.
So then why were you looking for a more cost effective place to have your infusion?
So as somebody who has worked in health, I mean, I've worked with my mom in health care, my dad in health care for so long for most of my life.
And the conversations about price, about the fact that I am in this small percentage of people who use most of the health care dollars.
So I am very aware of that.
And in a lot of ways, I feel incredibly guilty.
And I felt that if I could have the same treatment with the same drug at the same cost, but for a year instead of every six months, I felt perhaps my middle child syndrome was coming out.
But I felt responsible to at least try and ask and try and pursue that scenario because I'm just aware of, you know, it's a lot of money.
And if I can, you know, I'm a deal finder, my husband will tell you I'm always looking for the next good deal.
And if I can find that, why wouldn't I try and be a good and loyal employee?
And especially as somebody with a policy background, why wouldn't I try to make that happen?
And were you concerned that at some point the employer would not pay for this specialty drug?
I would say I was very lucky in I never felt threatened in that way.
So no, but I certainly know that the accumulating cost could impact other things.
And we certainly got a survey towards the end of that year that was like, what do you want?
Do you want to pay more for health plans or do you want to maybe cut it, take a cut in salary or do you want, you know, a bigger bone at like all of these things?
And I don't know, I can't speak for the company, but I would imagine cost pressures on a health plan that, you know, spends.
Hundreds of billions of dollars, sorry, yeah, hundreds of millions of dollars on services for their worldwide employee network.
And most of that likely being spent in the United States becomes a problem at some point no matter how big you are.
And can you explain what the class action lawsuit is going for and what is fiduciary responsibility?
So fiduciary responsibility, there, I'm sure there's a definition, we can probably look it up.
But in my mind means that you have to act with the best interest of the beneficiaries and their dependents.
And that's actually frequently referred to in ARISA, and you can't act against their interests.
So having things be more expensive when a reasonable process could potentially allow somebody to seek out a lower cost of care location might be a breach of fiduciary duty.
We'll have to wait and see, that hasn't really been litigated.
Most of the case law has been in the 401K space around excessive fees and all of that.
The class action alleges that they overpaid for generic drugs and did not have a prudent process for determining costs and that instead of working to address this, they simply follow the advice of their benefits consultant.
And part of the concern is that if, let's say, they didn't cover the drug at all, you would have had to pay all of that out of pocket.
Yes.
So yes, with an asterisk, if they had a contract, I would be responsible for paying what the contract is because I, or I could have done what would have actually been cheaper no matter what.
And this becomes part of the problem with how self-insured plans are managed generally is a lot of times, actually, let me finish that thought and I'll come back to that one because I'm going to get mixed up.
So according to the pricing table, self pay would have been about $50,000.
So it would have still been a pretty significant savings.
So I could have in theory said I don't have insurance and done that.
The problem is I wasn't guaranteed a reimbursement.
So I felt uncomfortable not using my insurance for such an expensive.
Like I can't afford $50,000 plus.
Like it's just that's a gamble and a risk that I'm not comfortable with.
So, and that really reveals the problem with many of these insurance contracts that employers rely on to help their employees access benefits is a lot of times.
The contract has perverse incentives to inflate costs because sometimes they can't afford it.