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
Patrick
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.
            Sanitas
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.
            Enrolling
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.
            During
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
supply.
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.
            Throughout,
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:
1.    
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.
2.    
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.
3.    
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
deserve.
4.    
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
rock.
5.    
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! 
(stbhemo.com) and the inspirational speaker series Powering
Through poweringthrough.org). 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
patrickjamslynch.com.
* The company name
has been changed for anonymity.

            

The Mountains are Calling…

The mountains are calling, and I must go. —John Muir

What is it that makes someone crave climbing hard, cold, dangerous mountains? Is it the challenge? The view? The bragging rights?

I never knew I loved mountains so much until I was well into my 40s and took up rock climbing on a whim. And that was in a gym. When I tried it outside, on New Hampshire’s Cathedral Ledge, a 500-foot sheer drop, I was hooked forever. A combination of fear, exhilaration, adrenaline, relief, and a huge sense of accomplishment flooded me. I knew very well there was a chemical aspect of this as endorphins coursed through my blood, making me feel drunkenly happy. Welcome to my new addiction.

I also knew that the intense concentration I had just experienced for four straight hours made me completely forget the world, any worries, the future, the past. Everything was reduced to, “Find that next nub to put your toe on and hang on for your life.” It was remarkably clarifying, much like skydiving, or even playing a complex piano piece. Such intense focus actually relaxes the brain when you finish the jump or performance. It’s like meditation.

And then, there’s just something inexplicable to me about rocks. I love them. I love the sight of them, color, feel. When I see a pretty rock at my feet, I pick it up to examine it. When I drive down the highway, I scan the dynamited masses on either side and imagine trying to scale them. When I am in Utah, my rock mecca, I just gape at the surreal world of red, striated rocks that reveal the history of the earth, the mesas, the hoodoos. When I get close to rocks, I feel something; energy? I know some people swear by the healing power of certain rocks. I don’t know about that, but I do know being near them makes me feel connected to earth, to life, to the universe.

My view of Kilimanjaro August 2016

Climbing is less about the view, and more about the journey, overcoming fears, pushing yourself to extreme limits, wringing out every ounce of strength (and oxygen) in you to see how much you can handle. It’s a psychological test set among the most beautiful places on earth.

Last summer I couldn’t wait to jump out of bed once or twice a week at 4:30 am, grab my gear, and head north to New Hampshire’s Mt. Washington for a 7-hour strenuous hike. You finish utterly wiped out, starving, grimy, sweaty, and deliriously happy. That was in preparation for Mt. Kilimanjaro last August.

Now I am training again—for Everest base came, in two and a half months.

Chris Bombardier

I’ll be following in the footsteps of mountaineer Chris Bombardier, person with hemophilia B, friend, and fellow board member of Save One Life. Chris also loves mountains, and he is lucky enough to live in Denver, and grew up among rocks. Chris is attempting to complete the Seven Summits, the highest mountains on each of the seven continents. He’s completed five to date (though has “temporarily” been denied access to Mt. Vinson in Antarctica due to his hemophilia). Well, when he was denied, he thought, “I’ll show them! I’ll just climb Everest first!” So Chris will be attempting to summit Everest in early May!

If successful, Chris will become the first person with hemophilia in history to reach all Seven Summits.

He’s done five of them: Kilimanjaro (Africa), Aconcagua (South America), Denali (North America), Elbrus (Europe), and Cartstenz Pyramid (Australia). Now, just Everest in Nepal and Vinson in Antarctica remain.

You may know Chris, a rising star in the hemophilia community. I first met Chris in 2011 at NACCHO, when he was about to climb Kilimanjaro with his uncle, and I was about to climb it a few months after him as a fundraiser for Save One Life. He shared his dream and I heartily approved and told him I would help if at all possible. I’ve followed each of his summits; we helped fund one of them. When no funding seemed apparent and he would get downcast, I told him to stay positive, it will happen; nothing will stop someone with such big and noble dreams. And sure enough, the funding for Everest was daunting, for anyone but especially a young man from Denver. But luckily, I’m not the only one who believes in Chris! Octapharma, a privately owned Swiss company that manufactures blood clotting medicine, funded Chris’s fees and travel entirely!

Best of all, this historical event will be captured on film and made into a documentary by Patrick James Lynch, another rising star in hemophilia, and Believe Ltd.

Chris on Aconcagua, with picture
of Brian, a suffering child with hemophilia,
Chris’s motivation

And there is a higher goal, beyond challenging ourselves and setting records in the hemophilia community. Chris wants above all to highlight the gaping disparity in treatment between the developed and developing countries. And as you know, this has been a passion of mine for the past 20 years. I’m thrilled that Chris cares as much as I do about changing the lives of 300,000 people worldwide with no access to factor. In fact, Chris is betting his life on it: a climb up Everest is difficult and dangerous. Chris is taking these risks because his reward is that the spotlight will be put on those who suffer even more.

Save One Life has been working in Nepal for years and we sponsor over 80 people there with hemophilia. We helped provide funding to rebuild homes post-earthquake, and LA Kelley Communications has helped pay for surgeries. It’s a country dear to us all.

So why do we climb? To feel rare emotions—euphoria, extreme exhaustion, deep joy, eternal gratitude. To overcome out fears; to push ourselves to the limits; to do something with lasting impact—a historical climb, a movie about hemophilia; and hopefully to change the lives of our fellow community members who need our help.

And me? I’m going to base camp at 17,600 feet after a nine day hike through stunning vistas (with yaks!), spending two days with Chris, then descending, leaving him to prepare for the climb about a month afterwards. I’ll have some stories to tell, and prayers to leave for my friend, one of the bravest guys I know.

Follow Chris’s preparation and climb on his Facebook blog Adventures of a Hemophiliac.      

  

Putting the Fun in Insurance Education

Pulse on the Road Speakers

I enjoyed a lovely weekend in Cleveland, Ohio, a wonderful city that was enduring a collective sigh over the loss of the World Series. Still, with sunny skies we held another Pulse on the Road with the Northern Ohio Hemophilia Foundation. Program/Advocacy Manager Randi Clites invited us earlier this year and we were thrilled to finally make it.

A solid turnout of families came to hear Kelly Lynn Gonzales share her riveting personal story of advocacy. You can read Kelly Lynn’s story in our latest edition of Pulse magazine, available on our website.

Michelle Rice and Kelly Lynn Gonzlaes

I followed next, with a presentation entitled “Sympathy for the Payer,” a play on the song “Sympathy for the Devil,” appropriate as Cleveland is home to the famous Rock and Roll Hall of Fame. I believe that if we can try to understand better how payers think, we can better advocate to them our need for access to product and providers for the best comprehensive care. I compared insurance to a chess game, and it’s our responsibility to know who the players are, what their moves might be and how to counter move.

Laurie Kelley introducing Patrick James Lynch

Michelle Rice, senior vice president of public policy and stakeholder relationship, NHF, then gave a new presentation called “Don’t Get Lost in Translation,” and shared the various acronyms, definitions and concepts payers use. All this information would be useful for someone with a bleeding disorder to self-advocate to payers, as Kelly Lynn successfully did.

Finally, after lunch… who knew insurance could be fun? Patrick James Lynch, of Believe Limited, and his teammates Ryan Gielen and Rob Bradford, engaged the audience in “Factor Feud,” a new game that allowed teams to compete using the knowledge they just absorbed through our presentations. Modeled after the TV game show Family Feud, Patrick acted as game show host and asked the teams at their tables to recall answers to various questions gleaned from our presentations. We all had a laugh when he asked the toughest question: What were the nine counter moves Laurie listed that payers have made in the last few years? Even I had a hard time remembering what I had said!

Patrick James Lynch

For each question Patrick charismatically posed, the teams consulted at their tables, racing against the clock. They wrote their answers on a white board, came to the front of the room—while game show music played and Rob swayed—and ta-da! Flipping their white boards over, Patrick read off the answers. The team with the right answers advanced an extra logo on the huge Factor Feud white board. Everyone got into the game immediately and loved it!

So not only did the audience of bleeding disorder families get tons of information about insurance, they got to revisit it, recall from memory, and compete to give correct answers. What an effective and fun way to learn!

Patrick is the perfect game show host, and the fact that he has hemophilia reminded me of how much talent and passion there is in our community. After the event, Sean, a father of a child with hemophilia, approached us and thanked us deeply for our efforts. He said this was one of the best information days he had been to.

Thanks to Sean for that, thanks to Randi Clites for hosting us, thanks to Shire for funding us, thanks to my fellow presenters—Kelly Lynn Gonzales and Michelle Rice—and thanks to Believe Limited for all the fun!

Answers please!

Patrick engages the audience

Ryan tracks the teams

The Factor Feud participants
Rob loves the 70s style theme song!

Susan Moore jots her answers down

Who won?

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