Healthcare Reform

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.


Get to Know Your Ex

The word “exchange” is a funny one. It’s Latin root “ex” means  “out of, away from” like “exodus” or “exorcism.” It also means “without, not including” like ex-dividends. Or “former” as in “ex-husband.”

In health insurance, it means “confusing, convoluted, complicated comparison.”

Of course, I am only half-kidding.

But all the more reason why parents of kids with hemophilia and patients 18 and older need to start reading about and preparing to engage in the coming state insurance exchanges. These are part of the Affordable Care Act, passed by Congress and being enacted in phases with most of the changes beginning in 2014. These include the exchanges, a virtual “marketplace” (basically a web site) where people can shop and compare to buy the healthcare insurance that best suits their needs and budget. Michelle calls them the “Travelocity” of health insurance. 

But with presidential elections looming, and some states suing the government to repeal the ACA, it’s still a Wild West health insurance show out there.

On Saturday, I attended a great presentation by Michelle Rice, director of public policy at NHF about state exchanges. NHF has been holding webinars to train the community’s top advocates. Michelle reported over 85 people attended the first webinar! 

Here are some snippets of what I learned Saturday from Michelle:

1. State exchanges will be like “one stop shopping”—a gateway to coverage for 30  million people who need insurance (and don’t forget the ACA will mandate most everyone have health insurance). 

2. The exchanges allow comparisons on four levels of benefits. They provide federal subsidies for premiums and out-of-pocket (OOP) costs for people below 400% poverty.

3. There’s funding for states to set up IT development, as the websites will need to be sophisticated to help the millions who will be tapping into them. 

4. There are minimum standards for all exchanges to allow easy comparison:

5. 4 coverage tiers based on patient OOP costs; 

6. Essential health benefits (being defined at the state level)

7. There will be “navigators” to help people use the exchange,  multiple ways to enroll in person, online, phone), and one simple application

8. In 2014 all high risk pools will go away and these people will end up on exchange.

 9.   2 states, Louisiana and Arkansas,  won’t operate their own

10. 15 states already established the exchange (which doesn’t mean they can actually do it!)

11. 3 plan to establish (California, Colorado, Maryland)

12. 19 states are studying options 

13. 12 states have taken no significant action

Things are moving quickly, and if you have a chronic disorder like hemophilia, you must have insurance.

Want to learn more? Go the NHF’s website and download slides from the last webinar. Get EXcited about learning more about insurance exchanges and EXcel! The more you learn, the better you will be able to handle the coming changes. 

Good Book I Just Read

Funny Blood: The remarkable
story of my daughter Ros
 by  Juliet Batten, 2011 

This is the very sweet and easy to read story of a young English woman who in 1974 adopts a beautiful baby girl, named Rosamund (“Ros”) who later is diagnosed with von Willebrand disease. The book, while no where near as in-depth and educational as Journey by the Massies, nonetheless paints a picture of the isolation in the 1970s and 80s of having a child with VWD, a disease not written about often or paid much attention to, given the medical demand that hemophilia/HIV provided. Juliet gives a heart-wrenching testimony of her daughter’s suffering and her stoic nature, as she braves so many hospital trips and procedures, and survives her first periods, which entail lengthy hospital stays. Both mother and daughter share strong character, uncomplaining nature and solution-seeking orientation. A wonderful mother and person, Juliet, and husband John, adopt Paul, a needy and active four-year-old, adding more stress and challenges into their lives, which they seem to overcome through the years with persistence and dedication.

The book is well written, interesting and inspirational. Ros succeeds beyond all odds and is now leading a successful life. My friend Richard Atwood, bleeding disorder book critic, writes, “The author did not expect to adopt a child with a major medical problem, but Juliet was capable and her Quaker beliefs provided a peaceful serenity. By necessity, Juliet learned about VWD, became a self-taught expert, and supported others; she also wrote articles for hemophilia and for adoption. Juliet, now retired, writes in her diary as Ros writes a blog; their inspiring story is insightful for living with a bleeding disorder.”

To this I would add that the book’s only flaws are the sometimes misinformation of the medical and scientific side of hemophilia, VWD, plasma and factor concentrates. For example, Juliet writes that 3% levels of factor VIII means severe hemophilia–not true. Also her descriptions of factor concentrates are a bit off-base. The book could have used more stringent medical editing. But if you look to the book for a heart-warming story of a remarkable mother and daughter, and to gain insight on what living with VWD is like in the 1970s and 80s, you will be very rewarded. I especially like how she gave such high marks and kudos to the Haemophilia Society and her HTCs. Juliet sounds like a classy lady! Three out of five stars.

Aloha Pulse on the Road!

It’s appropriate to start off Pulse on the Road in 2012 near one of our nation’s most historical sites, Pearl Harbor, as the nation this past week holds historical debates on healthcare. But let’s not predict disaster!

Pulse on the Road welcomed 35 families of the newly founded Hawaiian Hemophilia Foundation, headed by Jennifer Chun, mother of five, including two sons with hemophilia. Jenn’s done a super job of bringing the community together to learn, support one another and network.

The day began with a presentation by Jennifer Dumont of Biogen Idec, sharing the different sciences behind long-acting factor and the various clinical studies by various companies. The race is on!

The Bayer Living With Hemophilia program was presented by Kim Shaeffer, nurse at University of Davis, California and covered all aspects of raising a child with hemophilia, including nutrition and dental care.

After lunch came Pulse on the Road, our three-hour insurance symposium. This POTR started with my historical look at healthcare in hemophilia, how the US healthcare system has treated us post HIV-era (good!) and how and why it has evolved to treat us as a generic chronic disorder–not good. Next, Michelle Rice, public policy director at NHF, shared ideas on how to compare and contrast healthcare plans with your insurer, using the NHF Insurance Toolkit. Last, Jim Romano of PSI concluded by reviewing what the Affordable Care Act is, and what Hawaii can expect from healthcare reform.

We had great audience interaction with a very informal format. In fact, so much of everything in Hawaii is informal and laid back–a really nice change of pace!

The weather was great and following yesterday’s program, Michelle and I today were able to see the number one attraction in Hawaii: Pearl Harbor. What an excellent and tastefully done museum, film and viewing of the Arizona. It was breathtaking and sobering. It makes you all at once feel proud to be an American, and we were respectfully silent, knowing that beneath our feet, submerged in the shallow waters lie the bodies of the sailors who perished so quickly that fateful day, December 7, 1941.

If you want to watch a great movie on Pearl Harbor, watch “Tora! Tora! Tora!”

And keep watching the news about the Supreme Court’s hearings on the Affordable Care Act; what is decided will affect us all for a long time to come.

(Thanks to Baxter for funding Pulse on the Road and to the Hawaiian Hemophilia Foundation for hosting it!)

Great Book I Just Read

Issac’s Storm by Erik Larson
Reading about the greatest natural disaster in the US seemed appropriate after seeing Pearl Harbor today. On September 8, 1900, the seaside city of Galveston, Texas was hit with the worst natural disaster that had yet ever hit the US, a colossal hurricane that muscled its way through the Caribbean Sea. Galveston was an up and coming town that wanted to rival New Orleans one day. Monitoring the weather was Issac Cline, a seasoned and educated veteran of the US weather service. But hubris also ruled; despite the many warnings in the sky and on the ground, most notably from the Cubans, the world’s weather experts whom the Americans dismissed as inferior, the storm rolled in with a devastation of Biblical proportions. This story, masterfully told, details the players, the average folks and families, and the hurricane itself in a suspenseful and heartbreaking tale. Over 6,000 men, women and children died that fateful day; Galveston never recovered, and when oil was discovered near Houston shortly afterward, Galveston became the playground of the Houston rich. Why this book has not made it to Hollywood is beyond me: it has everything needed for a blockbuster including Issac’s petty rivalry with his brother, also a weatherman, who rightly predicted the storm would be a killer. Four/five stars.

Health Care Reform: Pulse On The Road

Making sense of insurance reform was the theme Saturday morning at the launch of our new program, “Pulse On The Road,” at the Indiana Hemophilia Foundation’s annual meeting. (Photo: HFI Executive Director Andrew Van Gordon)

With funding from Baxter BioScience, we brought expert speakers from several states to present stories, scenarios and solutions to an audience of 100 families. The idea is to bring to life our newsletter Pulse, which you can download here.

We started off the morning with Martin Addie, a man with hemophilia from Missouri, who shared his many trials trying to get health insurance. Martin had called me last year, asking for suggestions, and I learned that he is one person who did everything right, tapped every resource, documented everything, and yet he still could not get help with his dwindling insurance. You can read about his entire story in Pulse, but I can tell you the audience was struck by his determination and even more by his faith.

Next was Andy Matthews, a long time friend of mine. In the 16 years I’ve known Andy, I’ve actually never heard him speak and never knew he was such a motivational speaker. He focused on teens transitioning into adults, and what we can do as parents to encourage them to take control of their insurance and health.

Then came former executive director of HFI Michelle Rice, how gave a great overview of health care reform, along with dates when certain parts will be enacted. This was then followed by our “Community Forum,” with four panelists: Michelle Rice, now a regional director with NHF; Kisa Carter, Public Policy Director, HFA; Mike Bradley, Vice President, Healthcare Economics and Reimbursement, Baxter BioScience; and Judy Moore, social worker with Indiana Hemophilia and Thrombosis Center.

There was no shortage of questions posed to the panelists and the Q&A went for 50 minutes, and could have gone longer. Audience members wanted to know why we have to wait till 2014 for implementation of some parts of the healthcare reform bill; where can they go for more answers; will out-of pocket costs rise? All great questions.

After lunch we had a Meet the Expert table where folks could come and speak one-to-one with the panelists and speakers.

Next stop? Washington DC October 23, where we will present Pulse On The Road at the Hemophilia of the Capital Area’s annual meeting. Then look for POTR next year, perhaps coming to your state! In the meantime, keep reading about insurance and healthcare reform. Visit and for up-to-date information from your national hemophilia organizations.

Thanks to Baxter BioScience for funding this event, which received excellent reviews from the attendees! (Photo: Laurie and Kisa; Laurie with Carlita and Vanessa)

(Professional photos by Markey’s Rental and Staging)

Interesting Book I Just Read
The Time Traveler’s Wife
Audrey Niffenegger
This book was a gift from a friend, who thinks I time traveling when I jaunt off to developing countries. A sci-fi book that reads like a romance novel, about a man who can time travel (no explanation given) back to his own past, and even meets himself as a boy. More importantly, he meets his future wife when she is just a little girl. The story is compelling, and I confess I read all 500 words on a train ride to London, then on a 7 hour plane ride home. I couldn’t put it down! The writing style is very light, rather dry (but then, I had just finished Lord Jim by Joseph Conrad; gorgeous writing). This is like English fast food: yummy, filling, but not going to nourish your writing abilities or appreciation of the written English language. Still, there is a lot to say for fast food, especially when you tire of full course meals that you must digest slowly (like Conrad). A book about love, loss and patience; worth reading for relaxation. Two stars.

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