
How Parents Harnessed the Power of Social Media to Challenge EpiPen Prices - pavornyoh
http://well.blogs.nytimes.com/2016/08/25/how-parents-harnessed-the-power-of-social-media-to-challenge-epipen-prices/
======
refurb
The funny thing is that Epipens have been really expensive for a while. Sure
they took a 15% price increase over the past year. The price has been over
$400 for a two pack for a while.

The reason why this has come to a head is high deductible health plans. This
is where you pay the first $1000-$6000 in medical costs before insurance kicks
in. When all it was was a $30 copay, consumers didn't give a shit.

So maybe, just maybe, pushing more medical costs to patients will actually
create the pressure needed to reduce medical costs? Interesting thought.

~~~
blackguardx
The problem is that most doctors don't take treatment costs into account when
writing prescriptions. They may not even know the cost themselves. And
patients can't really be expected to keep up with the prescription drug
industry enough to request cheaper alternatives.

There are competitors to the Epipen but they don't get prescribed as much. I
would surmise that has something to do with marketing budgets. Maybe we should
join the rest of the world and ban drug advertisements? Oh, and allow Medicare
to negotiate a bulk rate for drugs rather than pay MSRP[1].

[1]
[https://en.wikipedia.org/wiki/Medicare_Part_D#Criticisms](https://en.wikipedia.org/wiki/Medicare_Part_D#Criticisms)

~~~
flukus
> They may not even know the cost themselves. And patients can't really be
> expected to keep up with the prescription drug industry enough to request
> cheaper alternatives.

In Australia we solved this by requiring pharmacies to offer generic
alternatives.

~~~
kwhitefoot
And in Norway, and I think the UK, and probably lots of other places.

~~~
throwanem
Including the US. Unless your doctor names a specific brand and includes the
phrase "dispense as written" on the prescription slip, you'll almost certainly
get a generic.

------
Animats
Mylan didn't reduce the retail price. They're giving out coupons and offering
deals for poor people. Insurance companies and schools are still paying full
price.

A comparable device, the Emerade Auto-Injector, made by Bausch and Lomb /
Valeant, sells for £26.94 in the UK.[1][2] The UK, of course, has socialized
medicine.

The company behind Emerade is more into cutting deals with other
pharmaceutical companies than bringing prices down.[3] "Valeant’s strategy is
to focus on the business of core geographies and therapeutic classes, manage
pipeline assets through strategic partnerships with other pharmaceutical
companies and deploy cash with an appropriate mix of selective acquisitions,
share buybacks and debt repurchases. Our leveraged research and development
model is one key element to this business strategy and will allow us to
advance development programs to drive future commercial growth, while
minimizing research and development expense."

[1] [http://www.emerade.com/](http://www.emerade.com/)

[2] [https://www.psuk.co.uk/everyday-items-disposables/dental-
ins...](https://www.psuk.co.uk/everyday-items-disposables/dental-instruments-
disposables/emerade-auto-injector)

[3] [http://ir.valeant.com/~/media/Files/V/Valeant-
IR/documents/v...](http://ir.valeant.com/~/media/Files/V/Valeant-
IR/documents/valeant-102315.pdf)

~~~
novalis78
has nothing to do with socialized medicine. You can buy anything on amazon,
where fierce competition keeps prices low. Try comparing prices for medical
devices or hospital prices. The healthcare "market place" is completely
disfunct and government ("social") is a key monopolizer.

~~~
jmcgough
The government is better able to negotiate with pharmaceutical companies
because of its size, which is part of why medicare pays them less than even
private insurance companies do. Individuals, in comparison, often don't have
time to do research or compare prices when they have an emergency, so the
healthcare industry takes advantage of that weakness.

~~~
Animats
No, Medicare is specifically prohibited by law from negotiating drug prices.
They can and do negotiate prices with hospitals and doctors, but not drug
companies.

~~~
cmdrfred
I've looked but can't find the rationale behind that law. I know the real
reason was to keep drug prices high but how was this sold to the American
people?

~~~
TheBeardKing
Just the usual story of corrupt congressmen and a Republican in the White
House:
[https://en.wikipedia.org/wiki/Medicare_Part_D#Criticisms](https://en.wikipedia.org/wiki/Medicare_Part_D#Criticisms)

~~~
cmdrfred
The doesn't really answer my question and from what I can tell the measure was
rather bipartisan.

~~~
danielweber
The fear is the "bargaining power" that will be used is "give it to us or we
invalidate your patent." And the fear is valid, because that's how most other
countries' governments negotiate.

~~~
cmdrfred
Thank you, that was what I was looking for.

------
alva
What a heartwarming story that completely distracts the public from the real
political scandal behind EpiPen.

[http://www.chicagotribune.com/business/ct-epipen-ceo-
bresch-...](http://www.chicagotribune.com/business/ct-epipen-ceo-bresch-
salary-20160824-story.html) [http://www.nytimes.com/2016/08/25/business/mylan-
epipen-sena...](http://www.nytimes.com/2016/08/25/business/mylan-epipen-
senate-manchin.html)

~~~
TechTeam12
That video on the NYTimes page you linked is a PR disaster for her... She did
an awful job at trying to defend a poor idea. On top of that, she kept quoting
statistics that make it seem like the EpiPen is more needed.... More needed,
but the price is staying the same! Logic is confusing there.... To go with
that, her posture/hand motion is just awkward....

This is terrible.

~~~
karmelapple
She pointed out most money spent on EpiPen has been going to getting laws on
the books (in 48 states!) to allow non-designated EpiPens to be available in
schools and other public places.

Wouldn't there be other good ways to ensure everyone has access? Eliminate the
need for a prescription for instance? How does one go about doing that?

~~~
maxerickson
She doesn't say that most money has been going to the laws. She says they have
expended resources on lobbying for those laws without specifying how much.

The CNN video that plays at this links says their margins were 9% in 2007 when
the bought the drug and 55% in 2014.

[http://money.cnn.com/2016/08/25/investing/epipen-cost-ceo-
lo...](http://money.cnn.com/2016/08/25/investing/epipen-cost-ceo-lowers-price-
mylan/)

Any business with 55% margin is a nice business to be in.

It's also kind of scandalous that they've designed a method to reach around
the insurance companies. I don't think drug companies should be allowed to
offer consumers rebates that make them more likely to utilize their insurance.
When they start from a high price, it's an accounting trick that doesn't cost
the company anything. If a company so strongly believes they've miss-priced
their product, they can simply reduce the price.

~~~
karmelapple
True statement - she doesn't say most. However, she stresses how most of their
effort is going towards laws. There was a mention of some slight improvement
to the injector, but the formulation certainly has not changed.

Going around the insurance companies is pretty insane, especially because
there are multiple types of customers: individuals, schools, hospitals, etc.
Should an individual get money back, but not a school? It's not like public
schools have a bunch of cash lying around.

------
rdtsc
> Some of the most prominent groups — Food Allergy Research & Education
> (FARE); the Asthma and Allergy Foundation of America (AAFA); and Allergy &
> Asthma Network — all have partnerships with Mylan for patient awareness
> campaigns and other programming. The groups aren’t required to disclose how
> much money they receive from the drug company, but Mylan, in its 2015 Social
> Responsibility report, lists all three groups as “allies.”

What Mylan learned here is that they didn't have enough social media presence.
I bet their had a meeting and didn't say "Yap we have been assholes about
this, let's roll back prices and appologize" but rather "People feel we are
assholes. Who is responible for our social media and marketing? Action item 1)
need to allocate more funds and hire a better PR company".

------
Const-me
What I don’t understand in this story, who and how limited the competition?

The product costs a few bucks to produce, retails for $600, and not covered by
patents: epinephrine discovered in 1901, the autoinjector is derived from
military model likely in public domain.

How comes no one in the whole US wants to earn billions manufacturing a
similar product and selling it for $50?

~~~
victorhooi
There was competitor (Sanofi) but they had a product recall, because it wasn't
delivering the right dosage.

What people don't seem to understand is - healthcare products are no laughing
matter (literally). This isn't like software, where you can release early,
release often, and where alpha quality is tolerated (to a degree).

For whatever reason, Mylan have done the FDA testing, and perfected a product
that works reliably. That is expensive. (I suspect profit factored into it
somewhere).

There's nothing stopping somebody for designing a different device (like
Sanofi) did that does the same job - the devil is in the detail, and making
sure you don't f_ck up.

Because believe me - the moment you screw up, and deliver the wrong dosage to
some kid in anaphylatic shock, and he/she dies...your company is history (or
facing a very costly recall and/or potential lawsuit).

My daughter recently had a health-scare. That moment, when I looked at her,
and honestly thought she wasn't going to make it, was heart-wrenching. So I
can tell you, as a parent, if my daughter was allergic to something, and the
Epipen was $600, and I needed one around - sure, I'd be bummed about the
money, but no, I wouldn't not pay it. And if you told me, these are the only
guys so far who have made sure it's reliable, or you can get these cheap 3D
printed copy that _might_ work 85% of the time, or she might die but it's only
$100 and realy, what's 15%?? What do you think I'm going to go for?

If this was like, say, something else that wasn't literally life-saving, then
sure, people's risk appetites would probably change dramatically.

~~~
FireBeyond
As a paramedic: So the issue isn't the epi itself (which is just adrenaline).
In fact EMS agencies around the country are moving away from the EpiPen (in my
state, all ambulance and fire units are required to carry the pen itself) to
drawing up from ampoules. In my relatively small county, Medic One throws away
$100,000/yr of EpiPens, because they have a short shelf life.

"Wrong dosage", though? Dosing epi isn't a particularly exact science - the
adult pen is 0.3mL, the junior 0.15mL. Quite often we will have to use
multiple pens on the one patient.

Underdose is entirely common - especially in civilian-administered situations.
Overdose is typically restricted to acute hypertension and associated symptoms
which can largely be managed by EMS (who should be enroute anyway for any
admin of epi, for reasons not least of which include that 'need for additional
dose').

~~~
victorhooi
Aha, fair enough - I just interpreted what I saw on Sanofi's homepage for the
recall:

[https://www.auvi-q.com/](https://www.auvi-q.com/)

> Sanofi US Issues Voluntary Nationwide Recall of All Auvi‑Q® Due to Potential
> Inaccurate Dosage Delivery > ... > If a patient experiencing a serious
> allergic reaction (i.e., anaphylaxis) did not receive the intended dose,
> there could be significant health consequences, including death because
> anaphylaxis is a potentially life‑threatening condition. As of October 26,
> 2015, Sanofi has received 26 reports of suspected device malfunctions in the
> US and Canada.

Or is it something that somebody like an EMS would probably not get wrong, but
say, a non-medically trained panicked parent could?

I've heard the shelf-life complaints about Epipens.

For me, I figured it was pretty idiot proof, even for an untrained person in
panick mode - take it out, stab it in leg, and that's it, as opposed to trying
to drain an ampoule into a syringe. Fortunately, I've never had to face that
bad situation....

~~~
FireBeyond
Certainly it's worth clarifying that saying that many people need more than
one dose doesn't mean that Auvi-Q shouldn't have to "guarantee" that their
device delivers the dose that it is intended to.

There are some things that can be done to improve the effectiveness of
EpiPen/equivalent administration - while the product is designed to be able to
be used through clothing, it is better to be removed where possible. Due to
the dosage size, post injection site massage is recommended for better uptake
from the muscles.

When to administer is also another question - arguably by the time the patient
is in significant respiratory distress, it should have been administered
earlier. This can be a balancing act between a 'sensitivity' and anaphylaxis.
Realistically, as soon as there is a deterioration into multi-system response,
Epi should be administered.

Certainly, other than cost there's no real motivator for the lay person to
need to be trained to draw up epi into a syringe. But in terms of ambulances /
medic units who stock epi (typically used in cardiac arrest), the requirement
to stock EpiPens is an unneeded redundancy, and an expensive one at that.

------
dboreham
Pro tip for anyone in the northern tier of the US: drive north to Canada where
the same EpiPen product is sold over the counter for around 120 $CAD. And
there is no rule that you must buy two at a time.

Source: my son has a severe peanut allergy and I have successfully purchased
EpiPens for him at the Lethbridge AB Costco.

~~~
lostlogin
Wonder what happens if you post them to someone?

~~~
cmdrfred
I may be able to answer this. Here in the US my asthma meds (two 100+ year old
drugs again like epinephrine) are $75 a month each (I take 2 types so $150)
with my insurance. I buy the same medicine for $20 - 25 from India (without a
prescription). From what I can tell, nobody cares that I do this as I have
received shipments every 3 months for the past 5 years or so. This results in
me not having to take off work to go to the doctor every six months so he can
say "So you still have asthma huh?" and write a script (costing me $50) as
well. I just recently signed up for my company's cheapest insurance option due
to this as the more expensive options simply were not providing value. Saving
in total a little over $425 a month or the price of my car a year.

In short: Ship 'em.

~~~
lostlogin
It looks like you can buy the pens in New Zealand and ship them to the US for
about US$100, maybe a little less if you ship several at a time. Not great
pricing but better than US pricing.

------
hoodoof
Only in the most extreme edge cases can anything be done about the fact the
the drug companies control the government which allows them overall to do just
about anything they want.

This is one edge case but the overall picture is that drug companies own the
government and ensure legislation is in place to give them astounding amounts
of government and consumer cash.

It's a silent coup.

~~~
gwright
I hope people think about this sort of thing when voting this fall. I'm
surprised at how many people will agree that neither Hillary nor Trump are
desirable candidates but will also refuse to consider Gary Johnson.

This year's election seems like a perfect time to re-think unflinching support
for the two main parties in the US.

~~~
ihsw
This would be great if it functioned like any other healthy democracy and
coalitions formed, but unfortunately there is a concerted effort to ensure
there are only two tents for people to get under.

~~~
witty_username
First past the post is a contributor to a two party system.

------
rayiner
The EpiPen thing is a really great example of two facts:

(1) It's better to be in a business where you don't (literally) save lives,
because nobody complains about how much money the Pokemon game makes.

(2) People won't actually take a lot of risk to market and develop life-saving
products without a financial incentive.

Epinephrine is not patented. The only thing stopping a competitor from
entering the market is coming up with a delivery mechanism for the drug that's
as reliable as Mylan's. Apparently that has proven difficult. Sanofi used to
make a competing device, until it was forced to do a mass recall because the
device couldn't deliver an accurate dosage.

The difficulty of getting it right is compounded by the fact that a device
that delivers epinephrine to children in anaphylactic shock is just about the
highest-risk product you can make from a potential liability point of view.
There is no market for a "slightly less good but much cheaper" product.

~~~
karmelapple
Here's a company getting it right but stuck waiting for approval:
[http://www.meddeviceonline.com/doc/compact-epipen-
alternativ...](http://www.meddeviceonline.com/doc/compact-epipen-alternative-
fits-in-your-wallet-0001)

Of course, we want strong requirements on life saving devices. Just a bummer
it takes such an awfully long time.

Anyone know the longest pole schedule item in getting a new drug/treatment to
market?

~~~
rayiner
That article says they didn't even submit an application until this summer.

------
1024core
The government should just use 'eminent domain' and seize the rights to it. A
few such cases would be enough to scare the rest of the industry to fall in
line.

~~~
Anon1096
Eminent Domain is for securing land, not seizing property. Even so, the
federal government has to pay a fair market price whenever eminent domain is
used, which in this case would be a very large number that taxpayers wouldn't
be happy to pay, because what comes after that? Does the government start a
manufacturing business? The patents are already expired, so there isn't very
much to seize.

~~~
virtuabhi
Actually, its very easy. Government makes a list of life saving drugs. Then
sets a maximum price on the drugs in the list. If a monopoly refuses to
comply, the government calls for yearly bids from companies around the world
(including generic drug makers from India). These companies fill the supply
gap and in the meantime capitalism works and a local company steps in. There
is no rocket science in manufacturing these drugs and pens - trivial once you
have the recipe.

And countries, which put people before corporations, actually do this.

~~~
nickff
Setting a maximum price does not allow the government to take the patent away.
The companies could simply refuse to comply, and the government would either
effectively ban the drug or be forced to buy the patent/license at a fair
market price.

~~~
douche
All they have to do is write the law that says they can.

~~~
nickff
There is a Supreme Court decision that says confiscation of a patent is a
constitutional taking, so they would actually have to change the constitution.

~~~
danielweber
Curse the law of law!!

------
S_Daedalus
I wonder how long it will be before our infrastructure really starts to go
south before people will wake up to what this country is becoming? I think a
few bridges need to collapse before people get the idea that this is about
"pump and dump" now, not investment in the future.

------
nprz
How do people think drugs get made? Takes a lot of effort, time, energy to get
a drug made and FDA approved. Shouldn't there be some incentive to accomplish
this task? Wouldn't there be an overall decrease in drug innovation if there
was no money in it?

~~~
JshWright
In the case of the EpiPen, the FDA approval process is _long_ over (as in,
decades ago). The price has increased several times over in the past decade,
despite no increase in the production cost (it's $0.50 worth of epi and a
couple bucks worth of plastic).

