Rx for Post-Inauguration Healthcare Uncertainty

To live in freedom, one must grow used to a life full of agitation, change and danger. — Alexis de Tocqueville

The inauguration is over and we have a new president. The day after the inauguration, mass protests for women’s rights occurred in major cities across America.  There’s a predominant feeling of fear and uncertainty in America now, perhaps more so than with any other new president that I can ever remember. Some of it is reflective of the times we are in: wars in the Middle East, radical terrorist groups, manufacturing decline and job outsourcing, dictators with their fingers on threatening global weapons and a seeming hatred for America. Uncertainty clouds our future look at the economy, international stability, and above all for families with bleeding disorders, the fate of the Affordable Care Act.

I recall in 2008 we hit the road to present our symposia “Pulse on the Road” to several states each year, to alert our community to the coming insurance reform. In 2009 so many audiences we met with had no clue what was about to happen. Insurance caps, copays, tiers, PBMs, formularies, Medicaid changes, preauthorization—this was all new stuff. Around 2011, we noticed a marked change. Audiences were picking up all the terms and concepts. Why? They were beginning to experience the changes. Some of the changes were brilliant: no caps! You could get as much factor as you needed. No pre-existing conditions! Really, anyone with hemophilia should be able to get insurance. And limits to out-of-pocket costs. The Medicaid expansion gave people in some states eligibility. Millions of people accessed healthcare that didn’t have it before.

But the “affordable” in Affordable Care Act was always suspect to me. Who was going to pay for these changes? No annual caps and no lifetime limits meant we could get the drugs we needed, a blessing for those with chronic disorders. The parents of children with hemophilia who burned through $1 million of coverage in a few years would have had to change insurance or change jobs even. Some parents simply couldn’t do that. Now, no longer, thanks to the ACA.

But we saw that insurance companies—payers—were being hit with the skyrocketing costs as a result. Their countermove was not surprising: cost-shifting to consumers. This manifested in different ways: restriction of choice. You suddenly couldn’t get the specialty pharmacy you wanted. Next came restrictions of drugs to a formulary. You could get factor but maybe not the one you want. Higher copays—way higher. Higher premiums. The benefits that seemed so great suddenly had a consequence that bit into our disposable income while restricting access to some of the therapies we wanted.

The ACA became a double-edged sword. Payers were fighting back.



President Trump, as he pledged, on his first day on the job, issued an executive order addressing the Affordable Care Act, basically seeking repeal of it. Now, nothing can happen overnight. The administration needs heads of the departments of Health and Human Services, Treasury and the CMS Administration and IRS Commissioner to be confirmed in order to act on this executive order. This will take time.

While we wait, the best advice our Pulse on the Road team kept giving our audiences in these truly uncertain times:

1.     Read your insurance plan every year at enrollment time. So much is changing so fast, and you must know the print, and the fine print. Don’t ever assume that just because you have the same employer, same insurer and same plan, things are staying the same.
2.     Calculate annual out-of-pocket costs. You need to have a few thousand saved up just to cover rising coinsurance, copays and deductibles.
3.     Sign up for your factor manufacturer’s co-pay assistance program. They all have them, and from what the manufacturers tell me, a lot of people in the bleeding disorder community are not taking advantage of them. Big mistake!
4.     Sign up for a free factor program. You can get limited free trial doses of a different product from what you are on; or your factor manufacturer may have a compassionate program to keep you, the loyal customer, with factor until you can get insurance to cover you.
5.     Talk to your social worker at your HTC and/or your state hemophilia organization to get up-to-date information about what’s happening in your state, with your plan.

It’s going to be an uncertain time for a while, but the bleeding disorder community is one of the best medical patient communities for advocating for its needs, and for keeping informed. Sign up at www.hemophilia.org or www.hemophiliafed.org for current news about the ACA, and health care reform and repeal as it relates to bleeding disorders.

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?

Pulse on the Road in Sunny California

Speakers Michelle Rice, Kelly Lynn Gonzalez, Laurie Kelley

Warmer than the
California sunshine was the greeting the Pulse on the Road speakers received
when visiting Buena Park on May 13. Executive Director of the Hemophilia
Foundation of Southern California Michelle Kim opened the Friday night event by
welcoming the large audience, who had just finished a delicious meal, and
introducing me, Michelle Rice (vice president public policy and stakeholder
relations, NHF), Paul Clement (science editor, PEN), and Kelly Gonzalez, person
with von Willebrand disease and mother of a child with the same.

See all photos from the event here.
Volunteers Patti Huerta, Linda Clement and
Randi DeSantis
Intro by Michelle Kim

The focus this time was
on access to product choice. Michelle Rice opened the event by speaking about
the many ways payers might choose to block choice of product—and why. Skyrocketing
drug costs combined with a plethora of new biological drugs, and not just in
hemophilia, are breaking the budgets of states and insurers. To contain costs,
payers are looking for ways to streamline contracts with the various
pharmaceutical companies. Payers might attempt to restrict brands under their
formulary. This means you must read your formulary to see if your brand is
covered. They also might attempt “step therapy,” which allows you to keep your
brand, even if it is not on formulary, but only after you “fail” at the
approved brand. What does fail mean? The drop fails to stop your bleeding. This
approach seems quite risky for those with bleeding disorders.

 
My talk followed
Michelle’s and I focused on what you need to know about product choice in order
to challenge your payer to keep the drug you want. Kind of like a Hemophilia
Products 101. We started with the basics: plasma-derived versus recombinant. Safety
versus purity. First, second and third generation drugs. Prolonged half-life
products. And what’s in the pipeline… and that was at once exciting and scary!
You can see that if you are a payer, you will soon be deluged with new
products. I asked the audience to guess how many factor VIII and IX drugs there
are currently on the market. They replied, six? Ten? How about 24! And more to
come.
The evening finished up
with Kelly Gonzalez’s riveting take of how she took control of her own health care
in the face of apathetic payers who did not understand VWD or her needs or that
of her daughter. Kelly’s story is a model for anyone looking to achieve success
in securing products and services. It’s dramatic, gut-wrenching and
inspirational!
When we finished, we had
the audience choose by applause where they’d like a donation from Pulse on the
Road to go, and the Emergency Fund won. POTR gave $1,000 to the HFSC in recognition
of its advocacy and great work for families. Michelle Kim has turned heads with
her new leadership and we look forward to more great things from this vibrant
chapter!
I recalled I first visited
this chapter in 1992, where I first met Paul Clement and wife Linda, who are
now my long-term dear friends, and also colleagues. Paul, as you may know, is
an extraordinary writer and researcher for us at LA Kelley Communications. And
I saw so many others I met here long ago. It was great to see everyone.

Thanks to Michelle and
her team for hosting us; and thanks to Baxalta for supporting this event!

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!

Dealing the Hand Your Dealt: Pulse on the Road in Las Vegas!

I’m in Henderson, Nevada, a suburb of Las Vegas, the day after we gave another Pulse on the Road symposium about health care insurance. The air is dry and cool, the sky a perfect robin’s egg blue, and I’m surrounded by red and purple mountains. What an enchanting place to visit!

Whenever I am here, I think of my dear friend and colleague, Renee Paper. Renee was a champion of those with von Willebrand disease. She became the face of those with VWD, and advanced care for it, and for Nevada, like no one else. Nevada has an HTC thanks to her; Nevada has an NHF Chapter, thanks to her. Trailblazer, activist, she was also an emergency room nurse who had VWD and her personal story, how she was given a hysterectomy in her early 20s to stop her excessive bleeding and thus became childless, led her to become a VWD Warrior when she was later properly diagnosed as having VWD. She vowed no one else would suffer as she had.

Rewarding a partipant for a correct answer!

It seems we might have another Renee in our midst! We invited Nevada resident Kelly Lynn Gonzalez to speak at Pulse on the Road, upon recommendation of Michelle Rice, vice president of public policy and stakeholder relations at National Hemophilia Foundation. Good gamble. Kelly has VWD, as does her daughter Jacey. Kelly is the mother of 5 (yes, 5!!) and also worked in education, and now works for a specialty pharmacy. She participated here as a mother, to share the story of the birth of her activism.

In a nutshell, it was the struggle to get a diagnosis for Jacey, who suffered terrible bleeding, and who missed 47 days of school in one year, after doctor upon doctor told her it was one thing or another. Jacey had already fought off cancer, and now faced more health problems. Dealing with the multiple needs of her many children, Kelly still was able to fight the system, honor her maternal instinct which told her the doctors were wrong, and push and push not only to get a proper diagnosis, but also then health care coverage! Her insurer would not allow her to use the HTC!

Kelly Lynn Gonzalez implores
the audience to advocate and never give up

Well, that changed eventually.

Kelly is a powerful, emotive storyteller, and her presentation had many in tears. The energy level in the room, even following two hours of insurance lectures, was palpable. Kelly inspired many, I am sure, to rise up and become better advocates for their children. The audience was 60% families with VWD; an anomaly for us!

I thank everyone from Nevada who came to this symposium. Executive director Kelli Walters and her team did an amazing job handling this event. Thanks to our own Zoraida Rosado for organizing, shipping and set up. Thanks to Michelle Rice of NHF, and also thanks to Baxalta for sponsoring this!

Michelle Rice, NHF, speaks about
preserving healthcare options

Above all, thanks to every single audience member. Michelle and I agreed, from the podium, that in 7 years we have never seen a more attentive, engaged audience. (Well, Alabama was a close second!!) In appreciation, LA Kelley Communications is going to make a donation to the chapter for the wonderful audience. When you are a speaker, an attentive, receptive and engaged audience is everything.

Laurie Kelley with Renee Paper
in Puerto Rico, 2006

Renee used to tell me, “It’s not the hand you are dealt, it’s how you play that hand,” using an analogy fitting for a Las Vegas lady. In other words, you have VWD (or hemophilia). So what? The important thing is what are you going to DO about it? Renee was a no-nonsense, fix-it-now kind of lady. She never engaged in self-pity, and didn’t exactly coddle others. But she was compassionate. Not intimidated by anyone, she took the hand she was dealt (VWD and losing her ability to have children) and turned it into a national and then international crusade for better health care for those with VWD, especially women. Sadly, Renee passed away in November 2007 due to health complications. She is terribly missed. I feared for a long time there would be no one to fill her shoes; who could ever speak with that fiery passion? Who would have that dedication?

People like Kelly Gonzales give me hope.

Click here to learn more about Renee Paper, RN.


Amazing Book I Just Read


The Witch of Lime Street: Seance, Seduction and Houdini in the Spirit World  [Kindle]
David Jaher

It’s fitting to have read a book about Houdini on a plane ride to Las Vegas. We all know he was the master illusionist (much like David Copperfield, who I will see tonight at MGM, is today). But who knew the rest of the story? It’s fascinating! Following World War I, families were so grieved by the tremendous loss of life, they turned to seances and “spiritualists” to help them contact their deceased loved ones. One outspoken believer in contacting those in the afterlife was Sir Arthur Conan Doyle, the author of Sherlock Holmes! He traveled and spoke widely about spiritualism. It became such a hot topic, with so many engaged in it, that Scientific American decided to hold a national contest to see if anyone could prove that spiritualists could really communicate with the dead. On the committee was Sir Arthur’s good friend, Harry Houdini, who did NOT believe in spiritualism. As a master illusionist, he believed everything could be explained as a deception. And he successfully debunked many who claimed to have contact with the dead. But the hardest case was little sweet Mina Crandon, who lived on Lime Street in Boston, the wife of a very successful surgeon. She wasn’t a publicity seeker and didn’t want the prize money. And no one could seemingly detect how she was able to levitate a table, conjure spirits that spoke, command items that flew around the room. Without giving away this fascinating and sometimes lurid tale, this case destroyed the friendship between Sir Arthur and Houdini, made Houdini more famous, and yet reviled by the spiritual community, embarrassed the esteemed Scientific American publication, and brought to light even more bizarre facts than anyone expected! It is a riveting page-turner, extremely well written and informative, full of wild characters and celebrities, and the ending is a shocker. Read it! Five/five stars!

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