
Cancer patients are being denied drugs, even with prescriptions and insurance - hedora
https://www.fresnobee.com/news/local/article232478212.html
======
tasty_freeze
One entirely maddening thing is that the ACA was labeled as having "death
panels" that would decide who lives and dies. That phrase was powerfully
effective in making large group of Americans strongly oppose the ACA. Even if
they knew nothing else about the ACA, they knew they didn't want death panels.

But as this article demonstrates, if we care to use the inflammatory "death
panels" label, we already have them.

It makes me despondent that we can ever get to a place where our politicians
can make rational, informed decisions about complex issues requiring multiple
trade-offs. Cheap political rhetoric is not only easy to sell, stoking fear
and tribalism is a winning strategy to getting reelected. 30 years ago most
voters didn't bother to read a paper and were simply uninformed; now most
voters are actively misinformed.

~~~
cheeky78
"But as this article demonstrates, if we care to use the inflammatory "death
panels" label, we already have them."

It's not inflammatory when it's true. When the government runs our healthcare,
choices are removed and someone else gets to decide if you should get surgery
needed or not...and many times this is life or death.

At least now, if a cancer patient gets denied drugs, they can go to another
doctor or get a second opinion.

All of my elderly relatives live in Canada and come over the border for any
major surgery. This is mostly because the wait times are sometimes in the
years..when they can just get private care in the US and get it done in a
matter of weeks.

Doctors are also usually maxed out when it comes to patients, so individual
care is lacking and they usually just want to try to push you out the door.

I also feel like I should have a say in someone's behavior, if I'm paying for
their healthcare with my tax dollars: smoking, drinking, risky behavior, etc.

I've lived in countries with universal healthcare and the quality is sub-par
compared to the US/private care. Sure private care can be improved, but it
shouldn't be ripped out and replaced.

~~~
hestipod
>I've lived in countries with universal healthcare and >the quality is sub-par
compared to the US/private care.

My experience has been the exact opposite. America's healthcare business
ruined my life. As a result I have no insurance and have lost the "privilege"
to BUY said American healthcare. I struggle with low income options and
programs, all insufficient. The only good care I ever got was in Europe. My
experiences with social hospitals and doctors was much better than in the USA
where it counts. Places weren't often as fancy looking, but the care was
superb. Even the private systems in those countries was far more affordable. a
few hundred for an MRI etc rather than a few thousand.

Healthcare and education in America can bankrupt you. That isn't something
people in countries with social options have to fear...despite any drawbacks
since no place is perfect. I don't know if Americans who are so opposed to
doing things like the rest of the first world just need to believe it's always
better here so they ignore the benefits...or if they just haven't had to face
this issue personally and are incapable of caring until they do. But I do know
I had a future and now I do not...and there is no net to catch me or care.
Whenever I see comments like yours I just get so upset realizing how it's an
unwinnable battle in this country because of these ingrained beliefs.

~~~
monetus
To add to your anecdote: I have a bill laying around where the asking price
for the mri was $21000.

~~~
hestipod
Yeah I was quoted 3500usd cash price recently and that was with the "generous"
cash pay/uninsured discount of 10% and a lower income community hospital.
Needless to say I did not get the scan. That's how it goes here. I only paid
about 150usd in a Central European nation for a more advanced 3d version, and
that was in the PRIVATE for-profit system there. American healthcare is a
tragedy that I don't see changing sadly since so many people fight any
positive change.

------
imglorp
I'm having exactly these problems, with exactly these companies: CVS and BC
Anthem. Doctor writes prescriptions; some are limited in doses, some delayed,
some with no copay, some priced barbarically, and some flat out refused. Then
the doctor's office has wizards that help advocate and sometimes that works,
sometimes there's a delay, and sometimes never.

In all cases, the patient suffers. They are already facing a medical
condition, maybe serious, plus stress from missing work and home life, stress
about the future, stress for paying for it all, and then along comes these
sharks who will double it all with more stress and worry and anger. Then on
top of that they don't get all the types and amounts of medicine their doctor
actually wants, based on science and experience, so they will get inferior
treatment in every way.

Yes we need to cut the price gouging. Adding friction at this interface is not
the way.

~~~
Gibbon1
Was talking with my endocrinologist. She said insurance companies are now
limiting the amount of insulin she can prescribe. She'll have a patient who's
been doing fine with 30 units a month and the insurance company will cut it to
25. And then to 20.

My theory is specialists, hospitals, insurance and drug companies are trying
to swipe everything that isn't nailed down before it all blows up.

~~~
zaroth
FYI, a 10mL vial of U-100 insulin is 1000 units. I don’t think you can buy
less than a 3mL vial (300 units) which is a pen cartridge and I think even
those are only sold as 5-packs.

I’ve never heard of an insurance company trying to reduce an insulin dose.
They definitely pushed back on the number of test strips they would cover
(e.g. 5 strips/day vs 7/day) where a prior auth was needed to get coverage at
the higher quantity.

------
pacaro
This happens across the board.

I have psoriasis and psoriatic arthritis. The barriers to getting a
prescription for an effective (and expensive) biologic medication can be
crazy.

When I've been forced to use a "specialty pharmacy", they require that the
medication be shipped overnight (it has to be refrigerated) which is clearly
more expensive than picking it up at a neighborhood pharmacy, that shipment
has to be arranged every month, which means a phone call, waiting on hold,
passing a quiz on my condition, surviving attempts to upsell supplies I don't
need. They also won't ship "too soon", which inevitably means that the monthly
refills slightly more slowly than once a month

I've also had insurance demand that I take ineffective but cheap medication
for 3 months before I can get the stuff that works -- ostensibly they want to
see if the cheap methotrexate (daily nausea, waves of fatigue) is effective.

In the 11 years since my diagnosis I've managed to be regularly on an
available effective medication about 60% of the time, mostly because of this
nonsense. 40% of the time I'm in pain

~~~
qrbLPHiKpiux
A patient was on Humira then went on medicare. Medicare would not cover Humira
and this patient had to go on Remicade.

The difference? Humira is able to be given by self at home. Remicade requires
an infusion by a nurse.

~~~
rosser
I was once dating a woman who had vertically contracted Hepatitis C during her
birth. We had an accident before I had completed my normal vaccination course.
The first-line treatment in those cases is a dose of immunoglobulin containing
the relevant antibodies.

My insurance gave two choices: pay $800 out of pocket for the drug at any
pharmacy that carries it (zero coverage offered, no recourse), take it to my
doctor's office by hand, and get it injected there; or go to the ER and have
it done one-stop there (at a cost of $300 to me and at least $3000 to them).

Fine, guys. It's your money...

~~~
alistairSH
_Fine, guys. It 's your money..._

Except it's not their money. It's all of our money, as the whole point of
insurance is pooling resources to hedge against any individual risk. Not that
I blame you - the implementation of some policies is completely asinine.

~~~
someguydave
The only fair way to distribute rare goods is to the highest bidder

~~~
ShroudedNight
This is landing squarely in Poe's law territory.

Notwithstanding, this is only possibly true under a model where everyone
initially has equal opportunity. A weak requirement that is almost certainly
insufficient, and yet one we have already failed miserably at.

~~~
someguydave
Distribution of rare goods and services to the highest bidder is fair because
it puts everyone on an even playing field with the same rules. What other
method of distribution achieves this?

------
mevile
If you're an employer in California and want to choose a provider that will
not have to deal with this you might want to consider offering Kaiser to your
employees. There's benefits and drawbacks, but one of the big benefits is that
they're vertically integrated and the doctors, labs, pharmacies are all part
of the same organization. I would think that would help avoid this specific
type of situation.

The big drawback is that your employees would need to live near Kaiser
facilities. In the Bay Area they are everywhere though and easy to get to.
Making use of any doctor or service outside of the Kaiser network is probably
not covered.

~~~
threezero
Kaiser’s system works better than a lot of others, but for me having to drive
40 minutes for a prescription is outrageous when I have 20 other pharmacies in
a 15 minute radius.

~~~
tzs
If the prescriptions are just for fairly routine drugs (diabetes, blood
pressure, cholesterol, etc), I've found that most of them are cheaper paying
the cash price at Walmart than the insured price at Kaiser, or paying the
GoodRx price at Safeway.

What I do now is have my Kaiser doctor give me an old-fashioned written
prescription on paper, take it to the Kaiser pharmacy that is in the same
building as the doctor's office, and ask them what my out of pocket cost will
be. While they are figuring that out, I look up my non-Kaiser options in the
GoodRx app on my phone. When I get the cost from the Kaiser pharmacy, I can
then decide where to actually have it filled.

It was similar before I had Kaiser. The Walmart cash price or the GoodRx price
was often less than my copay with Premera or LifeWise if I used insurance.

------
sorokod
Can't wait for the US health system to make it to the UK.

~~~
DanBC
Something similar used to happen here with NICE guidance not recommending use
of the meds, which is why the cancer drugs fund was set up.

After spending a billion or so on meds we found out that they mostly don't
increase length of life and also cause nasty side effects.
[https://www.bmj.com/content/357/bmj.j2097](https://www.bmj.com/content/357/bmj.j2097)

~~~
sorokod
Can you explain in a bit more detail how NICE guidelines are similar to what
is described in the article?

~~~
Scoundreller
UK has a set of standard guidelines for how to treat diseases with proven
drugs, and only pays for those (like the insurance company in the article
being rigid about its guidelines).

People complained that their doctors weren't allowed to go off-track and make
up special treatments for their special patients that went against guidelines
(like the patients in the article).

Because it's political suicide to deny "What the doctor thinks is the best"
when it comes to dying cancer patients, the UK government set up a special
fund of money to let doctors go against the guidelines. It accounted for
~1/6th of all cancer drug costs.

It turns out that this special fund was largely a waste of money, the
guidelines were fine all along, and patients were harmed by getting treatments
that don't work.

Despite having our hearts in the right places, patients were harmed, and funds
were taken out of some other (proven) part of the health care system. But
because we tried to help, we won't bring this up very often.

~~~
sorokod
And this relates to the article how?

Ultimate, what is described is an insurer tying to minimize the payout on a
claim same as they have been doing from the dawn of time except here it's
particularly nasty as people suffer and die.

~~~
Scoundreller
The beef in the article seems to be "We're not paying for it, because it's not
in our guidelines" vs. "Doctor thinks this patient is more special than the
guidelines"

Where in the article says that the insurance provider was trying to minimize
the payout on the claim?

Insurance companies _really_ hate paying for things that don't work (or have a
low likelihood of working). Even more than paying for something expensive that
works.

The article is really annoying, because Treatment A didn't work, and they
wanted to skip Tx B and go right to Tx C. Tx C worked, but the article never
named any of the drugs, so we can't evaluate the validity of this guideline.
We just have one anecdote of one event where doctor was ultimately right
(because nobody runs to the LA Times when they were in-the-wrong).

~~~
sorokod
> _" “So we get a phone call here to my staff saying that the pharmacist – not
> the doctor, but the pharmacist – to the PBM called and said they are denying
> the drug.”

The reason given: The patient should have surgery to remove his kidney
first."_

~~~
Scoundreller
Notice that the doctor didn't disagree with that being a course of treatment
for this disease. Their response was that the patient was too ill for that
surgery - a detail that wasn't known to the PBM.

Either the issue is:

1) Kidney removal shouldn't be a course of treatment (unknown based on the
details provided). Keep in mind, the same insurer would be paying for this,
and it isn't cheap, so it's not as ridiculous as it sounds.

2) Patient status with regards to surgery wasn't communicated to the payor,
but should be a part of that process. Or it was a part of the process, but it
was omitted.

3) Kidney removal should be a course of treatment, but the doctors didn't want
to go through with it anyway, and made up some reason after-the-fact to
continue to support their beliefs.

~~~
illumin8
> Notice that the doctor didn't disagree with that being a course of treatment
> for this disease.

Yes, but having a PBM tell a doctor that their diagnosis is wrong and try to
change their professional recommendation, without ever having seen the
patient, and with unknown qualifications, is downright evil and probably
malpractice.

We have doctors for a reason. They took a hippocratic oath to do no harm, and
allowing unqualified people who took no such oath to tell someone to "just
take out the kidney" is abhorrent.

~~~
DanBC
You place a lot of trust in doctors.

Knee arthroscopy is a good example where doctors _knew_ for a fact that they
were helping patients until we ran trials using sham surgery and we found out
it doesn't help some patients at all.

[https://www.painscience.com/biblio/fascinating-landmark-
stud...](https://www.painscience.com/biblio/fascinating-landmark-study-of-
placebo-surgery-for-knee-osteoarthritis.html)

[https://doctorskeptic.blogspot.com/2012/08/placebo-
surgery-4...](https://doctorskeptic.blogspot.com/2012/08/placebo-
surgery-4-knee-arthroscopy-in.html)

PBMs are probably bad, but we need some organisation to look at the evidence
and say whether something works or not.

------
4ntonius8lock
The fact that you need a prescription at all for many of these drugs is crazy.

I don't agree with drug laws related to addictive substances. But at least
they make sense. Even laws related to antibiotics. There's potential for
abuse, so the controllers at least have a logical (if not reasonable)
argument.

But what possible purpose does it serve to require a prescription for insulin?
Or chemo drugs which have no pleasant effect?

The blatant racket isn't even questioned when things like this happen.

We should be lobbying to remove the need for prescriptions from most drugs and
to remove liability for drug sales from pharmacies and other third parties.
This way, they don't have a say. And they shouldn't.

America is a place where the 0.1% probability there is a negative reaction
means 25% of the population can't access medications. And they have the
chutzpah to say it's for our own benefit. Legislative capture at it's worst.

------
roberte3
I have a really rare cancer, and it didn't get detected until I hit stage IV
and it started shattering my bones. Thankfully I lived 2 miles from a cancer
research hospital that actually has a specialist in this type of organ cancer.

My current treatment regime is based on a research paper. My insurance
initially denied me treatment based on "an expert in the field" and stupidly
listed the doctors name. I looked her up and she was a podiatrist...

For the most part, my treatment is dialed in and mostly working. But I had a
solid three months of fighting with the insurance company to get all of the
medications, and I do the monthly phone calls to three different specialty
pharmacies to get all of the various things that keep me able to walk.

Its a crazy hard problem because one of my medications is a "failed" cancer
drug. Tens of millions of dollars worth of R&D, several clinical trials, and
it turns out it doesn't work on most common cancers. (And even on cancers it
does work on, its usually used as a Hail Mary play, at EOL because it might
give someone a few more weeks, maybe). It costs roughly 40k a month, and I
might be stuck on it for the rest of my days.

~~~
Scoundreller
Anecdotes are great and all, but we still don't know if the textbook treatment
would have worked better or not.

Certainly those that failed with the exotic treatment plans won't be around to
complain about it.

------
charles_f
The American health care system is a perfect system.

Its product is perfect, the only alternative the customer really has is to
live in discomfort or die.

Its prices are fully unregulated.

The care providers are fully utilized and can therefore practice pretty much
the prices they want.

The insurance companies are consolidating and can therefore practice the
prices they want, while providing an ever dropping level of service.
Consolidation with pharmacies even give them a way to control the distribution
and a way to recover some of their disbursement.

Pharmaceutical producers are protecting their markets through patents that
give them monopolies, which combined with a total absence of governmental
overlook lets them practice the prices they want. The more the patient needs
the medicine, the pricier drugs can get. The incentive is then that the
deadliest the disease is, the priciest the drug gets.

The only balance that should exist with insurance weighing for lower treatment
costs ends up being lower reimbursement and more borderline control on the
patient.

Truly this is a perfect system, ever more efficient at extracting money from
people suffering. All the incentives are in, just not weighing in the favor of
patients.

------
ElDji
Can we agree to flag all those sick health insurance stories with a [US]
prefix in the title ?

------
hondo77
Just because they assume their Blue Cross policy is "the best" doesn't make it
so. Multiple medical professionals during my current cancer journey (in the
Fresno area, as it turns out) actually referred to Blue Cross as "the worst"
for the reasons given in this article. My insurer, Cigna, has been great.
Also, isn't it possible that the cCare doctor really was not following the
right protocol and prescribing things improperly? I'm not going through cCare
because I didn't like what I saw there.

~~~
caymanjim
I'm absolutely not defending the PBMs or what happened in this case, but
$500/mo for that age group is the junk end of the insurance market. It's
unfortunate, but they certainly don't have good insurance.

------
WalterBright
Having a national health care system administered by the government is the
ultimate monopoly. It necessitates a gigantic bureaucracy, which will decide
what you get and what you don't get according to their standardized rules.

Since it will be impossible to provide everyone with the best health care,
it'll get allocated according to bureaucratic rules, not what you or your
doctor want.

These allocations will inevitably be done based on political decisions, and
how politically connected you are.

~~~
calgoo
As someone who lives in a system with national healthcare I can say it’s not a
problem like you state. We have both private and public healthcare, and You
can use both or just the public one. If you have a life threatening illness
then you get priority treatment over illnesses that are more of a
inconvenience. It’s not perfect, but it’s a lot better then having admin
people deny you treatment based on cost alone.

~~~
WalterBright
Let's say you need surgery. No two surgeons are alike. Who gets the best one?
Who gets the worst? Who gets neither when they're all booked up?

In national healthcare, it isn't you who decides.

------
refurb
This is nothing new and is the process by which insurance companies reduce
drug costs.

Insurers come up with formularies that favor less expensive drugs first. If
those don’t work, the patient can get the more expensive drugs.

Manufacturers negotiate formulary agreements. They might offer a rebate to
move their product to first line use.

In therapeutic areas like psoriasis, the rebates can exceed 50% since it’s
such a competitive class with more than a dozen products.

~~~
darkerside
What's new is the application of step therapy to cancer care. Per the article,
this was introduced into Medicare by HHS under the Trump administration.

~~~
refurb
That’s true, cancer was generally unmanaged in the past.

However, some control is needed. I was talking to an insurer once and he
mentioned a doctor who had prescribed a drug for patient where there was no
evidence it worked. When he asked the doctor why, he said “well I have to give
them something”. This was a $10,000 per month drug.

------
iamleppert
Instead of fighting them like they did, why not just go along with them and
order the medications, throw them out just to get escalated to the right one?
When I had to deal with CVS Caremark I frequently had to order things I didn’t
need because it was part of their “protocol”. Rather than fight them, I would
just go along with them because I knew fighting a company like CVS is
pointless. I just threw out the stuff I didn’t need so I could get what I
needed out of them.

When navigating systems like these you have to find ways of looking like the
90% even if you’re in the 10%. Any exceptions to their protocols will be met
with resistance and delays as you have to make your way to some review board
vs. dealing with the mindless lower level staff who have no decision making
ability.

It’s what happens when you have executive management with MBA’s that have come
from running customer service, consumer finance and call centers running
health care.

~~~
yumraj
But won't that cause a delay, even if you ignore the cost, since I'm sure they
won't give the subsequent medications unless the time period in which you are
supposed to do the previous treatments had passed?

That delay is what can be the difference between life and death for some.

------
mnm1
These PBMs need to be eliminated along with the insurance companies that deal
with them. The blame is two fold and this can be seen as a conspiracy to
commit murder. Maybe not legally, of course, as these companies (pharmacy and
insurance) are clearly allowed to murder people without consequence. Insurance
companies whole business plan is based around this notion of providing the
absolute minimum care when a patient is really sick and needs it the most.
Who'd have thought there is another way to die in America just so pharmacies
save a few dollars? It's widely known about insurance companies. What other
companies have such legal power of death, I wonder?

------
xvilka
It would be very funny if the managers or their relatives who promote these
policies will meet cancer themselves. Then they will feel the human price of
their profits increase.

~~~
hestipod
You are getting backlash because it seems mean to wish suffering on anyway,
and never funny, but honestly I have learned this is the only way most people
acquire empathy, though personal suffering. Even then a large number still
find a way to blame others.

------
mirimir
This is called "preauthorization" aka "preauth".

Not only does it damage patients' health, but it increases physicians' non-
reimbursed costs.

~~~
mirimir
Oops, I was brain dead. It's "prior authorization".

------
patientplatypus
[https://www.reddit.com/r/PoliticalMemes/comments/cla50g/medi...](https://www.reddit.com/r/PoliticalMemes/comments/cla50g/medical_bill_meme_this_is_why_im_voting_for/)

------
devoply
> pharmacy benefit managers

The qualifications to become a pharmacy benefit manager include a bachelor's
degree, at least five years of experience as a pharmacist, and five years in
health plan pharmaceutical management.

So a bozo pharmacist can trump a doctor's judgment.

~~~
lotsofpulp
A pharmacy benefit manager is not a person, it’s an organization. In this
organization are usually doctors and pharmacists (who have doctorate degrees
also), who review medicinal claims based on the policies set forth by the
payer (sometimes an employer, sometimes an insurance company, sometimes the
government).

They also don’t “trump” a doctor’s judgment, they simply state whether or not
the claim for medicine is covered under the plan rules.

~~~
erentz
> They also don’t “trump” a doctor’s judgment, they simply state whether or
> not the claim for medicine is covered under the plan rules.

I think it’s incorrect to say they don’t trump the prescribing doctors
judgement just because they have a company policy they’re following. They also
have the ability to override the policy. This means they are making a decision
and when they default to what the policy says, if that goes against the
doctors judgement then that is a decision they made to trump that doctors
judgement.

This kind of “just following orders” logic is used a lot by people who want to
absolve themselves of the responsibilities of their choices.

~~~
lotsofpulp
>They also have the ability to override the policy.

From my understanding, they do not. At least not outside of a certain margin
of error, since the payer (for example a state government or employer) would
then blame the PBM for approving payment something it wasn't supposed to
approve payment for, and hence seek reimbursement from the PBM or cancel its
contract and go with another PBM.

~~~
erentz
I’ve had specialty medicine approved that very clearly goes against policy at
different phases of the review process (including immediately) on different
insurance plans. So they do seem to me to have this power.

~~~
lotsofpulp
I can't answer for why they would violate the policies they are supposed to be
enforcing, but I do no know PBMs get audited by governments and penalized for
improperly approving medications for Medicaid recipients.

