State of Denial

When you submit an insurance form for coverage, have you ever been denied?   What should you do if you’ve already received a denial of service or medication?

Here are examples of denials that may happen:  

• Your health insurance company won’t let you be seen at a hemophilia treatment center (HTC) for comprehensive care because the HTC isn’t “in-network.”

• You can’t go to an HTC because you’re in a health maintenance organization (HMO). Your managed care company doesn’t have any physical therapists in-network experienced with bleeding disorders.

• Your HTC doctor prescribed a brand of factor replacement therapy, and your insurance company won’t approve it.

What can you do about these denials?

Typically, people tell me they’ve just accepted the insurance company’s decision and denial. But you need to be proactive. Did you or your healthcare provider ask the insurance company to reconsider? Did you file a complaint? You have a right to challenge the decision. You’ll likely get help from your provider, and you may enlist the help of your local hemophilia organization. Consider asking for an appeal even if you have Medicaid. Sometimes, people with Medicaid feel they are getting “free” healthcare and don’t want to rock the boat. No matter what type of healthcare coverage you have, you have the right to ask the company to reconsider.

Is this “appealing”?

Here are some ideas on getting what you need, if you need to appeal:

• Insurance companies are in the business of providing care that leads to good medical outcomes for their members. If you and your healthcare providers can show why something is medically necessary, your chances of getting the insurance company to cover it will increase.

• If an HTC isn’t in-network, ask the insurance company to make an exception. When you call the number on the back of your insurance card, be prepared to tell them why you need this service. You’ll probably have to ask the HTC or provider to write a letter to the insurance company. If the insurance company still says no, you can file an appeal.

• If your insurance company doesn’t agree with the treatment plan that you and your healthcare provider have agreed on, you may need a letter of medical necessity. For example, if your treatment plan includes a prescription for a different factor replacement therapy than you currently use, a prior authorization may be required. If the insurance company still doesn’t approve it, you can appeal that decision.

• You’ll need to follow the processes for complaints and appeals that your insurance company requires, so keep good records of phone calls and correspondence (emails, letters, forms).

• You can get the details on the company’s process by calling the number on the back of your insurance card or going to the insurer’s website.

Bottom line: If you and your healthcare team think that you’re not getting medically necessary treatment approved, you’ve got to speak up!

Timeless Advice on Healthcare Insurance

It’s hard to know where to begin to discuss what’s happening in healthcare insurance now… and what will become of the advances made with the Affordable Care Act (“Obamacare”). Right now, consider some great advice from a young man with hemophilia who had to fight for what he needed. We might all need to do this if repeals on the ACA are made. (Taken from PEN’s Insurance Pulse newsletter 2015)

When Goliath
Insured David: How to Get What You Need When the Giant Doesn’t Listen
James Lynch
The rules seem to keep changing even though I’ve had the
same insurance plan for several years. How do I make sure I don’t get any
unpleasant surprises in January?
Anyone with a bleeding disorder knows that navigating the
healthcare system can be extremely difficult, and sometimes a downright
nightmare. Unfortunately, our community’s size—or lack thereof—puts us in a
vulnerable position; there simply isn’t enough education or understanding about
our needs, and this happens on the medical side (hematologists and nurses) as
well as on the business side (insurance and reimbursement specialists).
            I have
severe hemophilia A. In early 2014 I needed a new insurance plan. I’d moved
from New York to California. I didn’t know much about the healthcare culture in
California, so I contacted a navigator—a person trained to assist people
seeking health coverage through the Affordable Care Act’s Marketplace. I knew
she’d worked in hemophilia, and thought her expertise would help me select a
plan. She pointed me toward a plan with Sanitas Healthcare*, and I enrolled.
Healthcare works differently than most health insurance companies. For one,
it’s not just a health insurance company; it’s an integrated delivery system
(IDS), a network of healthcare organizations operating under one umbrella. The
IDS model is one example of a managed care system that’s grown more popular in
recent years as a means of making healthcare coverage cost-effective for the
insurance provider. Sanitas is not only a health insurance provider, but the
company owns the hospitals its patients must visit under their plans, employs
the doctors its patients can see, and controls the pharmacies where its
patients receive medication. In lay terms, Sanitas controls everything. It’s
gigantic, with over 9 million patients across eight states plus Washington, DC.
Sanitas has over 174,000 employees, and in 2013, it reported $53.1 billion in
revenue. Yup, billion. Sanitas is the
largest managed care organization in the United States.
with Sanitas I felt safe. Unfortunately, Sanitas turned out to be a terrible selection
for someone with hemophilia, especially an adult patient—something my navigator
friend was not aware of because she’d worked in pediatrics.
Member Services: How Can I Not Help You?
The first problem emerged immediately with the wrong information
from Member Services. I was told I was unable to schedule an appointment for the
first five weeks following registration. This included not being able to order
factor until a Sanitas doctor wrote me a new prescription. Multiple customer
services agents confirmed that there was no way around this protocol. Yet I
found out later from a Sanitas executive that what I’d been told directly
contradicted company policy: new patients are
able to fill an active script from another doctor when they first enroll with
Sanitas to ensure continuity of care.
these five weeks, I made numerous phone calls to Member Services; I was
repeatedly disconnected, shuffled through a seemingly endless phone tree, or
left voicemails that were never responded to.
            When I was
finally able to make appointments, I was told by Member Services that in order
to see a hematologist, I first needed a referral from a primacy care physician
(PCP). I argued that I have hemophilia, a chronic bleeding disorder, and have
records from a PCP visit within the last six months. This argument was
fruitless; I had to see a PCP first. Later, I again learned that this is not
Sanitas policy.
            When I saw
the PCP, I learned it would be at least another week until I could see the
hematologist, and then another five days until the factor prescription written
by this hematologist would be ready at the pharmacy. I asked if the PCP would
write my prescription, but he wasn’t comfortable with that. When I stressed
that I was running out, he wrote a “holdover prescription” for one week’s
Got Factor?
When I tried to pick up the holdover prescription a few days
later—because I’d already been told many times that Sanitas didn’t provide home
delivery—the pharmacy could not find my factor. One pharmacy employee actually
said, “We lost it.” I was shocked, but because the hematologist appointment was
only a few days away, I decided to wait. My supply continued to dwindle.
            At my
hematologist appointment, I found myself in the role of teacher, explaining
microbleeds, trough levels, and so on. The hematologist repeated many of the
same procedures the PCP had done, checking my blood pressure and heart rate He
didn’t measure or closely examine my joints. For a company that prides itself
on its data, I was surprised that this hematologist didn’t measure anything. As
the appointment ended, I received my full prescription for factor.
            Days later,
a pharmacy employee called. She had my factor, but she said that because my
policy expired on March 31, 2014, she would not release it. I told her she was
incorrect because my policy didn’t even begin until April 1, 2014. She
forwarded me to Member Services. After the phone rang for a solid five
minutes—I’m not exaggerating; I timed it—I was disconnected.
I made over 50 calls, spent over 400 minutes on the phone, and spoke to dozens
of employees who gave me incorrect information about Sanitas’s policy regarding
newly enrolled patients, receiving chronic medication, home delivery options,
the ability to see a specialist for a chronic condition, my account status, and
my payment records.
Do I Have Your Attention Now?
Fortunately, I documented my entire experience, so when it
became clear that I needed to take more aggressive action, I had detailed
notes. I wrote a pointed, aggressive, but professional open letter to Sanitas
and posted it on my Stop the Bleeding! Facebook page, then shared the post on
my Twitter account and with my email list. In less than 72 hours, my letter
received over 8,000 unique reads. A senior staff member at Sanitas contacted
me, and I requested an in-person meeting with various senior staff to discuss
the litany of problems I had experienced.
            The meeting
was granted. I met with the medical director, pharmacy director, COO of
clinical operations, and head of hematology/oncology. It was a semi-productive
meeting. The senior staff heard my complaints and informed me of changes they’d
already made to their “onboarding” new-patient enrollment process to better
account for new patients with chronic diseases. The pharmacy director changed
certain internal policies and implemented some education for her staff as a
result of my complaints. She also agreed to put in writing that home delivery
of factor for people with hemophilia was available on request. On the clinical
side, I insisted that the overall quality of care was nowhere close to that
offered by an integrated comprehensive care model such as an HTC, but it was
clear they weren’t interested in making clinical changes. Instead, they
insisted that the comprehensive care they offer is on par with an HTC’s. When I
insisted that the care was simply not equal, they agreed to “look into it,” but
nothing ever came of that.
Getting White-Glove Treatment
It’s been roughly one year since that meeting. I’m receiving
a tremendous amount of attention from Sanitas. Clearly, I’m the “problem child”
and receive white-glove treatment so I don’t cause any more PR headaches. Many
flaws remain in Sanitas’s system for people with rare, chronic conditions, not
the least of which is uninformed Member Services reps who are often the first
contact for new patients. Fortunately, a focused effort is being led by two
strong advocates in our bleeding disorder community who are collecting stories
and organizing an action plan to effect reform at Sanitas.
            Here are
five guidelines everyone with a bleeding disorder should follow when engaging a
new healthcare company or medical service provider:
You are the expert. It can be tempting to
relinquish control and responsibility to an authority figure such as a doctor
or pharmacy director, but you can’t afford to. You must be an expert on
yourself. It’s your body. It’s your life. Own it, take responsibility for it,
and fight for what it needs.
Log everything. Many large companies and
institutions have myriad people who answer phones or respond to emails; these
people often work with minimal information, minimal accountability, and minimal
incentive to go beyond the basic call of duty. Keep track of everything: names,
dates, times, badge numbers—even the simple act of asking reps for this
information subtly informs them that you are to be taken seriously, and if
needed, you’ll have a record of your experience.
Follow up again. And again. And again.
Unfortunately, people don’t always say or do what they claim they will. Keep at
them. Don’t allow uninformed or unmotivated employees to compromise your
healthcare. Keep to your agenda until you receive the positive outcome you
Use our community. The bleeding disorder
community is lucky to have empowered and educated advocates. I was overwhelmed
by the number of people who offered to help me during my crisis. In this
community, when you reach out, people will reach back. Don’t be ashamed to ask
questions and ask for help. We’re here for each other. We are each other’s
Stay positive and solutions-driven. No matter
how noble the fight, nobody likes a rude, angry, or unprofessional fighter.
It’s important to be assertive, aggressive, and diligent, but it’s unacceptable
to be cruel or to behave inappropriately. If the system is broken, point out
the flaws, and offer what you can to help fix it. We can’t view these companies
and their staff as enemies; they’re not! They’re our allies. But a lack of
adequate education coupled with laziness, defensiveness, or irresponsibility
can create catastrophe.
My experience facing a true, personal healthcare crisis was
eye-opening, but I knew my own personalized healthcare needs, documented
everything, stood my ground, and was able to articulate my needs to the
company’s executives. Being your own advocate is not an easy process, but it’s
manageable, empowering, and necessary. Always keep in mind that advocating for
yourself is also advocating on behalf of everyone in our community.
Patrick James Lynch, 29, has severe hemophilia A. He is
co-founder and president of the digital content agency Believe Limited, through
which he created and produces the award-winning hemophilia comedy series Stop
The Bleeding! 
( and the inspirational speaker series Powering
Through He’s the 2013 recipient of HFA’s Terry Lamb Award 
and the 2014 recipient of NHF’s Loras Goedken Award. He
lives in Los Angeles, California. Read an in-depth account of his experience at
* The company name
has been changed for anonymity.


Your New Secret Weapon

For me, documentation has always been key, and I’ve kept everything from my past. 
Actress Diane Keaton

I can’t say I’ve kept everything from my past, but I’m pretty good at recording things. Part of that is the journalist in me, part of it is the economist I used to be. When my first child was born with hemophilia, it seemed natural to me to use a spreadsheet to record every single bleed and outcome, log in every single vial of factor with lot number and assay size, and record every single doctor’s visit. I thought everyone did that. Data is valuable.

Data and documentation may also be your secret weapon in the new health care environment. None of us really knows yet how the new administration will affect the Affordable Care Act, but it’s trying to repeal it. While we wait for the dust to settle, the single best thing you can do right now, if you are not already doing it, is document everything. Every bleed. Every vial of factor. Every doctor’s visit. Every Explanation of Benefit  (you are receiving them, right?). Every insurance paper. And above all, every phone call to your insurance company.

As someone who never documented phone calls, I learned the hard way how important this is. About 12 years ago some unsavory characters (not from the hemophilia community) had a business run-in with me and it required legal mediation. As my lawyer and I sat across from them and their lawyer, I was shocked, annoyed and impressed that they had documented every single phone call we had ever made, and were even quoting me! Even while I fumed, I thought, What a great idea. Note to self: document all calls.

And so I do. It’s been helpful for recalling details, promises, and problems. It impresses people. It frees me up to not try to remember everything later on.

You don’t need to document to impress people, but you will be glad if you document your insurance calls. You may one day need these notes to waive a fee, to get a reimbursement, or to file a complaint. Something tells me we’re in for a lot of patient complaints down the road!

Hemophilia Federation of America has made documentation easier. Their Patient Insurance Log Book has pages already set up for you to log in calls. And at the end of the book is a complete glossary of insurance terms, and even the procedures to file a complaint for each of the major insurance companies! 

So get your secret weapon ready: order a Patient Insurance Log Book and record everything regarding insurance. It can save time—and money—someday.

Order the Patient Insurance Log Book at or call 800-230-9797.

Choice: Once Upon a Time

By Chris
Chris Ingram and family
There was a
time when we could choose a specialty pharmacy that not only could obtain the factor
brand we needed, but understood hemophilia, knew us personally, and gave us the
best customer service we had ever received. How did they understand hemophilia
and its challenges so well? Maybe someone at that pharmacy or their loved one
had hemophilia. We were always connected by the common diagnosis. To me, it
seems like those times were just a fairytale.
Now specialty
pharmacies are being chosen more often by the insurance company, run by
healthcare professionals who claim to understand hemophilia. I am here to tell
my story about how much of a nightmare it can be to have a specialty pharmacy
that does not “get” hemophilia and our needs. I hope in the future no one ever
goes through what I did just to get factor.
The hemophilia
specialty pharmacy I had been using for two years, operated by people with
hemophilia, closed. I decided to try another one (I’ll call it “Hemophilia
Pharmacy”), also operated by people with hemophilia. I found out that they were
not in network and my insurance company (I’ll call it “Big Payer”) wanted me to
use their own specialty pharmacy (“Payer SP”). Hemophilia Pharmacy started
getting contracted with Big Payer, which is a lengthy process. In the meantime,
I still needed a specialty pharmacy.
I called “Salud
SP” here in Arizona.  They started
the process to get the precertification so they could service me. They were not
in network. So that is now two pharmacies I have looked into with no luck. On
to the next pharmacy.
I then decided
to contact “National SP,” which knows hemophilia well and is contracted with my
plan. By this time I was running really low on factor; I had only three doses left
and just had oral surgery two weeks prior. National SP could not get my factor
brand! I guessed it was due to my using a new factor brand that was only recently
made available. National SP told me I had better use “Pet SP,” the payer’s specialty
 So that was the third specialty pharmacy that I had struck out on!
Every time I tried
to use a specialty pharmacy that knew hemophilia, I was told that Big Payer
wanted me to use Pet SP. So I called Pet SP and start the
enrollment process with them. I also told them that I need the factor to be
processed under the medical benefit
not the pharmacy. They told me that they bill under the pharmacy, unless it does
not get approved (then they will bill under medical). Under pharmacy, I would
be responsible for 50% of my factor
My out of pocket cost would be $45,000 every month. I did get
transferred to a representative who listened to me, and said if I ask to
process under medical, then they will do that first. Then he told me something
unbelievable. Pet SP cannot get my factor
I must use Pet
SP but it cannot get my factor! So Pet SP told me to use their sister specialty
pharmacy, “Sister SP.” I called Sister SP, related my story, and asked about my
factor brand. They told me I was given wrong information. They ended up calling
Pet SP, and asking them why I was told this information when it was false.
At this point
I was furious. I called up Big Payer; I told them I want answers. Why is it no specialty
pharmacy can obtain my medicine? They said they would look into it, an answer I
thought was unacceptable. I firmly told them they have until tomorrow to give
me an answer or I will be calling the state insurance commissioner to step in
and I will also be calling a lawyer.
 When I hung up I began researching different
lawyers and trying to get a consult to see if I have a case. I had been working
with Big Payer for three weeks with no solution; I felt like I was being
neglected. I did not hear anything from Big Payer the next day. The following day
I took the day off of work to make more calls. The state insurance commissioner
called back to learn more, and two different lawyers called who were interested
in the case. The supervisor for Big Payer called, and said she was going to
make sure this got taken care of. By now I was out of factor.
Several hours
passed by and I finally got a call from the Big Payer supervisor. She found a
specialty pharmacy in California that could get my factor to me the next day.
I told her
this was unacceptable; I needed factor today– no exceptions. I had told them
that Salud SP was in Arizona and could get me my factor brand within hours of
getting an approval. The situation escalated to involve Big Payer’s medical director,
who approved a one-time, 30 day authorization for Salud SP. I had my factor two
hours later!
This is not
the first time I’ve had an issue with my insurance company, but this is the
first time it involved my factor brand accessibility. Is choice of specialty
pharmacy—and maybe factor brand—just a fairytale now?
Chris Ingram is a certified professional coder (CPC) who
currently works at UnisLink. He’s worked as a medical
and coder for the following medical specialties:
urgent care, pain management, gastroenterology, internal
medicine, pediatrics, ob/gyn, orthopedics, and trauma
He has also taught medical billing and coding at two
In his spare time, Chris loves attending car shows and
car detailing for family and friends. Chris has severe
A and lives in Arizona. Contact Chris


Pulse on the Road in Baton Rouge

Zoraida and Kelly before the presentation

Just a 90 minute drive northwest from New Orleans, the “Big Easy,” Pulse on the Road brought a sense of urgency to the 80 attendees in Baton Rouge, state capital of Louisiana, of our latest presentation on insurance. Over a warm lunch of chicken, potatoes and greens, we provided the history of insurance reform in the US, particularly as it affects people with chronic disorders like hemophilia and von Willebrand disease, and how payers continue trying to cut costs… and why.
Laurie Kelly and attendee
Shawn Whelan
As we did two weeks ago, I opened with the brief history of escalating drug and medical costs, showing how imperative it was that insurance companies find ways to cut costs. Michelle Rice, vice president of public policy and stakeholder relations at NHF and recognized insurance “guru” of our community, then educated about how payers would go about doing this. Restricted networks, higher co-pays, specialty tiers, prior authorizations–sound familiar? And each of these methods at best will impact your bottom line and at worst could impact your access to certain therapies you might need.
Speakers Michelle Rice (NHF), Kelly
Lynn Gonzales and Laurie Kelley
Finally we closed with an emotive and inspirational story by the indomitable Kelly Lynn Gonzales of Nevada, a woman with von Willebrand disease who fought tenaciously for her daughter’s right to treatment–and won! Not only the treatment for her daughter, but treatment for all with VWD in Nevada… and tremendous respect from the medical and insurance community.

Said Carl, an attendee with hemophilia, “I’ve heard and read lots of testimonials from people and their problems with insurance, doctors and hospitals. But these ladies really opened my heart on how some people are really neglected.”

Donnie Akers, former board member of Hemophilia of America, told us that this was one of the best presentations he has seen in the last few years. Thanks to all who made this a success, including the Louisiana Hemophilia Foundation, and Baxalta, for sponsoring this event.That concludes our year of Pulse on the Road! 
Laurie and Jan Hamilton,
founder of HFA
After the event, Zoraida and I drove to New Orleans to enjoy the sights, sounds and tastes of one of our greatest American cities. Admiring the Spanish wrought-iron balconies and old architecture, the “voodoo” shops, the jazz music pouring out of every street corner bar and the smells of Cajun cooking, New Orleans is like no other place in this country! We capped our day with a “Haunted Houses” tour in the dark. New Orleans has a rich history of hauntings, and the stories vary from when pirates roamed the streets, to Nicholas Cage’s purchase of a $5 million house, not knowing its gruesome history! He soon sold it.
We end the year with a pep talk! Read your insurance policy annually, document your insurance inquiries and treatments, watch for hidden costs, and put aside an emergency fund for unexpected escalating costs and to help pay for hospitalizations. Be vigilant!
See you next year! 

Voodoo Shop!
Louisiana Riverboat

Andrew Jackson Statue

Most famous haunted hotel: The
Andrew Jackson!

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