I
feel like I should have written these entries as part of a series: I
should have named them all the same thing and then given them an
episode number. But I didn't. Who knew it was going to become such a
saga?!
If
you are just now finding out about my struggles to stay on Praluent,
due to my insurance denying my refill last year, then you must read
the previous entries. They are, in order:
- The Struggles to Stay on Praluent. And They Are Not What You Might Think: http://livingwithfh.blogspot.com/2016/12/the-struggles-to-stay-on-praluent-and.html
- Between a Rock and a Hard Place with the Praluent Refill Authorization: http://livingwithfh.blogspot.com/2017/01/between-rock-and-hard-place-with.html
- Refill for Praluent APPROVED: http://livingwithfh.blogspot.com/2017/02/refill-for-praluent-approved.html
I
suggest that you would read them in successive order, just to
understand the whole story, as it progresses. First, I was denied
when I needed to refill my prescription (please keep in mind the word
“refill”: I had been approved by my insurance to take Praluent;
but when the authorization needed to be renewed, after 6 months, I
was denied); then, my nurse appealed the decision, to no avail – I
got denied again; and lastly, I appealed their decision one last time
and they eventually approved the refill, 6 weeks from my original
request for a refill. All the details of what happened are in those
three entries. If you are riding this roller coaster, as well, please
read them and maybe some things will be helpful for you. But also,
read on …
Just
to be clear: patients of FH for whom statin therapy is not enough, or
Homozygous FH patients, or FH patients who are allergic to statins
depend on drugs like Repatha or Praluent (PCSK9 inhibitor drugs) to
keep their cholesterol levels low. To some of us, this can be the
difference between having a heart attack and avoiding one. So, if
these drugs work for you, you want your insurance to keep them on
their formulary and you want them to keep giving them to you. They
are insanely expensive, so the insurance's help with paying for these
drugs is paramount to being able to continue the therapy.
After
my insurance approved my refill, I thought that was the end of my
interaction with the insurance company and with the Specialty
Pharmacy which is the entity that actually manages the filling of the
prescription. But I was wrong.
As
I mentioned before, the FH Foundation (https://thefhfoundation.org/)
has reached out to me and wanted to investigate further into what
happened with this refill. They work with various insurance companies
to smooth out the process for patients that need these drugs
I
can tell you I was not alone: several people that read the FH
Facebook post mentioned that they had the same experience as mine,
where they get approved the first time, and then the refills are
problematic. My own cardiologist said that about 80% of his patients
get denied for a refill and he cannot figure out why.
Well,
after talking with the FH Foundation folks, they put me in touch with
a person from my own health insurance who was investigating how they
can improve this process for us, FH patients. He emailed me, and
asked me a few basic questions about my account (name, date of birth,
etc) and then he dug up my file and my history of requesting a
refill. After several weeks of digging, he and a manager from the
Specialty Pharmacy (you are always dealing with the reps from the
Specialty Pharmacy when you fill this prescription) had a conference
call with me to talk about what happened.
I
went over the story, but it was fast apparent to me that they knew
what the story was: I called in for a refill, was told that one would
not be allowed without a pre-authorization; my nurse was required to
fill out a form to require pre-authorization, and that was denied.
Twice. Then, I filed one last appeal, and the insurance magically
pre-authorized me for my refill.
To
my surprise, the insurance company person as well as the pharmacy
manager admitted that what happened was a series of mistakes on their
end. The whole time I was calling and placing the order for a refill,
they were treating me as a new case, not as a pre-approved case who
just wanted a refill. When they did that, they also faxed the wrong form
to my nurse: they faxed a form where they ask for all complete
records that prove that I have FH. My nurse was half-completing
that information, because she was assuming (like me, too), that she
had already filled all that information out the first time she asked
for the first approval and that the insurance company already has the
information they need. But they needed that whole information
thoroughly completed again, because in their mind, I
was a new patient. This was a mistake made by the people working with
my doctor to file the request for the pre-authorization.
According
to both the insurance company and my Specialty Pharmacy, when you
file for a refill, they require one form with just two questions
on it: what was the LDL before therapy and what is the LDL now?!
If they see that it dropped (and in my case, significantly), then
they approve the refill, because they think the drug must be working.
If not, they won't approve it. They don't need any of the previous
information, about your family history, or your own history of CVD,
or your previous and current medication, etc. They just need the
doctor's office to tell them those 2 LDL levels and based on the
trend of the numbers, they stop your therapy or continue it.
The
people I spoke with apologized profusely and thanked me for being
willing to help them “discover gaps in their process and training”
so that they can fix this and so that no other patient should
encounter this problem again. They also told me, quite surprisingly,
again, that their full intent is to keep people like me on
therapy, and not make them stop
or skip the therapy. If you think about it, as expensive as these
drugs are, they are still cheaper than paying for a heart attack or a
stroke. So, it is in their interest, too, to keep us on the drugs.
I
asked them what made them approve my last appeal and what made them
investigate this case in particular. They said the appeal was
approved because with the papers that I sent and the clear letter
explaining my plea, they could tell right away that the Specialty
Pharmacy reps were not listening to me. I asked if my doctor
intervened more, and they said: “No. The only thing that approved
your pre-authorization was your paperwork, that you submitted with
your appeal.” In that, I added tons of documentation to prove my
condition, medical history, my history with them, and I clearly
stated that this was for a refill and not for a first time approval.
When the appeal department got that, they approved it right away. You
can read in this blog entry
(http://livingwithfh.blogspot.com/2017/02/refill-for-praluent-approved.html)
what all the papers were that I sent in with the appeal.
This
conference call was the first time in my life, possibly, when I was
not frustrated and exasperated, after talking with an insurance
company. I was really grateful that they took the time to investigate
and they discovered the mistakes in the process, and owned up to
them. Hopefully, lots of people like me will have better experiences
in the future.
My
next pre-authorization is required again in August (after 6 more
months since last time), but after that, it will only be required
once a year, instead of every 6 months. I will definitely report back
with how that next step will go. So far, all the monthly refills have
come in pretty painlessly.
Another
thing that I found was that the Praluent manufacturer is actually
paying my copay, as I have yet not gotten a bill for this year's
refills. They explained that sometimes, before they bill me, they
look to see if the manufacturer offers a copay card. If they do, they
apply it to my balance, and it just so happens that what they offer
covers my balance. The manufacturer has never reached out to me, nor
has it sent me any notification that they would be doing this. This
has been completely behind the scenes, between the manufacturer and
the health insurance. They mentioned that my insurance does not
accept a copay card from all manufacturers, but they do from the
maker of Praluent, as this is a preferred drug for my health
insurance.
They
also told me that when there is no copay card, and they must cover a
significantly expensive drug like Praluent they go next to various foundations. Some foundations might cover the copay partially or fully, after a screening process. This was not my case, because the manufacturer's copay card was accepted.
Both
the insurance liaison as well as the pharmacy manager shared their
contact information with me, so that I can contact them directly
should this happen again. As I mentioned before: this has been an out
of the ordinary experience with a health insurance company. So far, I
have been pleasantly surprised by this follow-through and attention
to details. Let's hope this holds and not just for me, but for
everyone else struggling to get through to these institutions.
Please
comment if you want additional information on what I have submitted,
or if you have more questions about my interaction with the insurance
company, the FH Foundation, or anything else. I'd be happy to help.
Easy
journeys to all of you, and to all: much health!
