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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.

            

Education Advantage – Scholarships for our Community brought to you by Shire

Our community is fortunate to have many different scholarships. In fact, LA Kelley Communications had the first online listing of scholarships for the bleeding disorder community! That’s how much I believe in a higher education. Take advantage of what the community is offered! Learn about Education Advantage below!

Laurie

Education Advantage – Scholarships for our Community brought to you by Shire
Since 2010, Education Advantage has awarded more than 200 scholarships to US students with bleeding disorders.

The program is open to eligible patients with hemophilia A, hemophilia B, inhibitors or von Willebrand Disease. Education Advantage is open to US students, regardless of which brand of treatment used.

Education Advantage offers three different scholarships to eligible applicants:

  • University Scholarship 
    • Up to $7,000 for students seeking a bachelor’s degree
    •  Renewable for up to 3 additional years
  •  Community College and Technical Scholarship

    • Up to $1,000 for students seeking an associate’s degree or a technical vocational certificate
    •  Renewable for up to 1 additional year
  • GED Assistance
    •  One-time $150 reimbursement for students that pass the GED test

Get started on your application today at www.bleedingdisorders.com/ea

The application period for 2017 is open now until March 17th. You can find more details about the scholarships and eligibility requirements, meet the previous year’s winners, and find out how quick and easy it is to apply at www.bleedingdisorders.com/ea

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Dave Madeiros: Remembering a Visionary Leader


One month from today I leave for Nepal, to visit the families we support through Save One Life and then to hike 9 days through the Himalayas to Everest base camp with Chris Bombardier, one of my hemophilia heroes!

Thinking of this trip and Chris got me thinking about another hemo-hero I knew once. And his legacy is so important because almost everything we worry about now regarding health insurance coverage, he warned us about back in 2003. Dave Madeiros was our Paul Revere, sounding the alarm about vast and sweeping changes in healthcare insurance coverage that would deeply impact us all. And he was right.

Dave Madeiros and his beloved
Shelby Mustang
Dave had hemophilia, HIV and hepatitis C, as did his brother Larry. Proactive positivism seems to run in the blood as well. Both men were intelligent, handsome, smiling, gregarious and outrageously charming. And Larry was already quite famous: he and his wife Carol became the first US couple to successfully employ a technique developed in Italy that would allow them to have a healthy child despite Larry having HIV. 


I met Larry at the tail end of an NHF meeting back in 1999, I believe. He was so full of passion and ideas. He wanted to try to work together with me. I met Dave later on; I can’t even recall when exactly. But he knew I had a newsletter, PEN, and knew I was well known in the community. He had a message to get out to our community.


The good times were coming to a close. All that we knew about healthcare insurance was going to radically change.

I first thought Dave an alarmist, or maybe at best, just overly dramatic. But no. Dave was a rare leader, a visionary. He knew exactly what he was saying, and sought to convince me. He invited me to come quarterly to his office in Boca Raton, Florida to have brainstorming sessions with his team. Dave was founder of the Factor Foundation of America, a nonprofit. Its mission was to provide financial support and education to the hemophilia community. He funded it through the sales of factor. He had established a pharmacy, and up to 70% of profits would be channeled back into the community.

At a time when CEOs of specialty pharmacies were getting quite rich off their earnings, and the specialty pharmacy industry was very much unmonitored by the government, Dave stood out. He was a man of his word. I met his wife Kim and visited his home. It was modest, his sole luxury a classic Shelby Mustang he adored.
His driving force was to help the community. Return profits back to it to fund programs, and most of all to alert it. At one meeting in his Boca Raton office, after he had explained to me what was going to happen, I said, “It’s like a coming storm.” Dave turned around a white board he had against the wall and on it were the very words The Coming Storm. It was eerily coincidental how similar we saw this threat to our community.

Dave educated me about pharmacy benefit managers (PBM) which threatened to take over the factor distribution business (they since have). No one at NHF had even heard of a PBM. Neither had I. He told me about coming formulary restrictions, predicted specialty pharmacy consolidation (true on a massive scale) and cut backs in reimbursement, which would cause funding to NHF chapters and programs to disappear. Insurers would question having so many products to choose from (they do now) and would seek to limit choice (a way of life now).


Dave was visionary; he saw it all. He fed all this information to me, to write a three-part series in PEN starting in 2005, about coming insurance changes and how they would impact our community.

After our articles were published, the alarm was sounded. Our advocacy groups started to plan and respond, and proactively meet with insurers to educate them about our needs, and to maintain access to choice.

Some of the happiest memories of working in hemophilia were my trips down to Boca. I recall how trusting Dave was of everyone, how open he was with his personal struggles and his dreams. How good-hearted he was to all. He adored his wife Kim. His dedication and compassion were immense: he and Kim adopted a child with hemophilia.

Dave Madeiros and son Jason
We last met on February 24, 2004, in Boca, after we spent the previous two days working together with his team. We were having breakfast, talking about next steps for his company and plans. I left to go back to Boston and two days later, one of Dave’s business partners called to say that Dave had collapsed the day after I left, and was rushed to the hospital. He passed on February 29, from liver failure. We were all devastated. Of all the people we have lost in the community, his affected me the most. He was like a brother, he was a friend, and above all, a mentor. A leader of rare qualities.

Our national and state groups are doing a superb job of engaging with the government about Medicaid and the private insurers about preserving our hard-earned coverage. But I sometimes wonder where we might be if Dave were still here, advocating for us. What would he think of the ACA? The current attempts to  repeal the ACA?

When I returned to Boca a few days later to attend Dave’s funeral, Kim said to me, “He thought the world of you.” I thought the world of him. And the world is so empty without his leadership and vision, his laughs and ideas. Kim wrote in an homage to Dave, “Dave loved his life and lived it with energy, gusto and bravado. To have known Dave is to be touched by a loving and lasting force forever.” Thirteen years later these words are still so true.


We miss Dave, but our community continues his legacy to maintain access to therapies, and seek coverage for all with bleeding disorders. Dave died while doing battle, like so many classic heroes. It’s a battle I hope we will win.

What’s Your Everest?

I was scanning through Facebook, wondering what to write about for Sunday night, and came across a post by one of my hemo-heroes, Luis Andres Aguayo. I’ve never met “L.A.”, though he wrote an article for PEN last year and we’ve chatted on the phone. He is a body-builder, and posts regularly about his competitions and more importantly about his training. 
Despite the fact that I’m old enough to be his mother, his posts inspire me; his life inspires me. His physique is incredible. He has absolutely sculpted it through determination, goal-setting, pain, and infinite number of hours in the gym. All the while, he remains humble and a joy to speak with. 
Chris Bombardier on Carstenz Pyramid, one of
the Seven Summits
I’m training too, for a mountain trek to Everest base camp in April with another hemo-hero, Chris Bombardier from Colorado. Chris also has goals, determination and infinite hours spent hiking and climbing to prepare. And… I am also old enough to be his mother!
Training is hard at age 59, even when you think you’re in pretty good shape. These two heroes have hemophilia, and when I think of what they are accomplishing in spite of their disorders, I get motivated to push harder. Chris has already summited five of the Seven Summits! L.A. came close to winning being on the cover of a men’s fitness magazine! I love mountain climbing, and I love weight training, so it’s natural I enjoy following these guys as they train.
But it’s tough for me. Even just five years ago I saw tremendous change when I worked out consistently. Now, it’s like everything takes twice as much for half the results. But I keep going!
Tonight I am aching all over from a double whammy: training at 8 am for an hour with my trainer Dan French, and later in the day running 6 miles in the 45° weather. My treadmill died last week (no, not from overusing it) and nothing beats running outside. I felt good but ouch, later on, aching knees and back.
One of my hemo-heroes!
I have 6 weeks left before the Everest trek. Here’s what a typical week is like while training:
Sunday: Day off. Recovery is very important for the body, especially at this age. I’m paranoid about getting an injury which is all too easy to do.
Monday: Yoga for 30 minutes (a MUST!). Training with Dan, upper body and abs, one hour.
Tuesday: Yoga. Cardio… either in the gym in Salisbury, Massachusetts, or at my home gym. I can ride my stationery bike while watching a documentary about mountain climbing, or throw on a 20-lb backpack and hike up and down for 90 ridiculous minutes on a plyo box over and over while watching Dr. Strange or Mad Max. Superhero movies make you feel empowered! This is a killer workout.
Wednesday: Training with Dan, lower body (tons of lunges and jump squats) and abs.
Thursday: Yoga. Cardio, maybe the elliptical for 90 minutes at the gym, excellent workout!
Friday: Yoga. Training with Dan, speed work-out. This is a killer too. Usually Dan and I chat about music, but 10 minutes into this workout I can’t talk. I even get dizzy.
Saturday: More cardio!
And food: 75% of training is eating the right food and having the right diet. Dan analyzed my diet 6 years ago when he was getting me ready for Kilimanjaro and saw I needed more water and protein, and basically overhauled how I ate. So I cut out (for the most part): soda, diet soda, fruit juice, alcohol, sugar. We don’t keep any of that in the house. No pasta, white bread, desserts. A typical day goes just like this:
Breakfast: three scrambled egg whites, cantaloupe or banana, black tea.
Lunch: (and after a workout) A protein shake with banana, pineapple (or berries), 14 raw almonds and GNC Whey protein powder. Delish.
Dinner: I don’t actually eat dinner unless I go out. Why? I don’t know how to cook and don’t even like to cook. Things burn and catch fire all the time. So I have another shake, or a salad with protein (shrimp, eggs), or a banana with organic peanut butter. I eat out about twice a week, when I’ll have fish. 
My demons? Movie popcorn and M&Ms. I love going to movies and twice I have not had movie popcorn and it was not the same experience! And Dan tells me movie popcorn is the worst thing you can eat, next to Cinnabon.
Despite having a trainer, I still get motivation from people like L.A. and Chris. As they give hope to young guys with hemophilia to reach their dreams, I hope I can inspire some moms who want to get in shape. It’s never too late to start. It helps to have a goal, a big goal, like a mountain climb. Kilimanjaro was an incredible experience, both times! And I know Everest base camp will be a dream come true. 
L.A. wrote this recently on Facebook: “Keep this in my notes! What’s your one sentence destiny? The vision you base your decisions on?” His is, “Use adversity to change others’ lives.” And Jordan Romero, the youngest person to conquer the Seven Summits, asks, “What’s Your Everest?”
I love that. Our Everest climb will put a spotlight we hope on Nepal and its people with hemophilia, who live in hardship, especially after the 2015 earthquake. We’re going to meet with the 80 people we help through Save One Life. You can follow L.A. and Chris on Facebook, and read HemaBlog to see how the training and eventually the climb are going!
Great Book I Just Read
No Summit Out of Sight: The True Story of the Youngest Person to Climb the Seven Summits
Jordan Romero
An inspirational book about the boy who summited Everest at age 13, and conquered all Seven Summits by age 15. Despite warnings from critics about having someone so young attempt something so dangerous, Jordan was well prepared, genetically-gifted and just plain lucky. He documents what inspired him, his training, his observations of the countries, people and climbs. It’s fun and interesting, and Jordan’s a marvel. He uses his climbs to motivate other children now by posing the question: What’s your Everest? A light read, but very engaging. Kudos to this remarkable young man and his family! 3/5 stars.

Discover the Brand New LivingWithHemophilia.com!

I made a pledge this year to get all of LA Kelley Communications’ books updated and back in circulation, because I love educating people about hemophilia. And information needs to be updated in this ever-changing bleeding disorder community. Please check out Bayer’s newly revised website LivingwithHemophilia.com to learn more about hemophilia and to learn about its highly effective and successful leadership program, Leadership U.  

The following content is sponsored by Bayer.

Discover the Brand New LivingWithHemophilia.com!

There is no community quite like the hemophilia community—which is why Bayer set out to create an online destination unlike any other.

Introducing the all-new LivingWithHemophilia.com, reinvented and reimagined to engage patients and caregivers like never before. This is where you’ll get the scoop on everything from the role of genetics, to information on pain management, to tips for traveling—and all things in between—with content that’s engaging, easy-to-find and relevant to you.

It’s the real talk you want, served up the way you want it. For example, the “Living With Hemophilia On Your Own Terms” video series is designed to help you understand often confusing terminology related to hemophilia—so you can feel more informed than ever.

LivingWithHemophilia.com is also home for information on Bayer Leadership U, the summer internship program for college-aged students touched by hemophilia. For more than a decade, Bayer has offered motivated, young individuals a paid, six-week internship at their U.S. headquarters in New Jersey. Leadership U interns participate in activities that sharpen leadership skills and apply these skills in a real-world corporate setting through a variety of independent projects.

For more information on the internship program, visit www.LivingWithHemophilia.com/lead. The application deadline has been extended and will be open until Wednesday, February 15, 2017.

So, that’s the story behind the all-new LivingWithHemophilia.com. Make sure you check it out!

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