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.

Pulse on the Road in Texas!

Austin, Texas was the location of our third Pulse on the
Road in 2014. Temperatures spiking 100° didn’t stop a huge turnout for the Texas
Bleeding Disorders Conference
, co-hosted by the Lone Star Chapter of NHF and the Texas Central Chapter
of NHF. Melissa Compton, mother extraordinaire of a child with hemophilia (and
a compassionate supporter of Save One Life, I might add!) emceed the event and
introduced our team on Sunday morning at 8 am sharp, following a delicious
buffet breakfast. About 400 people attended the two-hour session, one of our
highest numbers yet!
I changed up the presentations a bit and first
delved into why did the Affordable Care Act (ACA) come to be? With a few stats,
I showed that skyrocketing medical costs, particularly in specialty drugs
(which factor is), was straining the state budgets; it was only a matter of
time before private insurers caught on. Looking to cut costs, insurers turned
to increasing prior authorizations, formularies, decreasing choice of factor
provider, and more.
After setting that stage, Tom Larmondra of
Baxter Healthcare
reviewed the ACA, particularly the benefits to those with
bleeding disorders. He reviewed the fine print, exclusions, and most important,
the Marketplace: what is it, how does it work, and how to use it.
Back to me: I next reviewed the importance of
choosing a healthcare plan, as many people may need to go on line to choose
one. Comparing it to car insurance, which we are all more familiar with, we
reviewed costs versus benefits, and in particular which costs to watch out for.
The goal? Learning the main things to consider when you compare healthcare
plans so you do not underestimate your healthcare annual budget. We want you to
save your hard earned income!
Last, we welcomed Michelle Rice, Vice president, Public Policy and Stakeholder Relations, National
Hemophilia Foundation and Marla Feinstein, Policy Analyst, NHF. Their topic, Appeals and Grievances—Making Your Case, covered
what to do when insurers reject your claims. Using the fun and sophisticated
ARS devices, audience members cast their votes for the correct answers to a
series of educational questions, while tunes played in the background
(Ghostbusters?).
The event scored rave reviews from the looks of the 60+ evaluations
turned in. Our thanks to my team: Zoraida Rosado and Elizabeth Rosado, who
planned the morning well in advance, set up displays, tables and handouts, and
dissembled everything; to Michelle and Marla for sharing their expertise and
their weekend; and to Tom, for his expertise, and Baxter Healthcare, for
providing the funding for all the Pulse on the Roads, now in our 5th
year!
We’re done for the year but look forward to visiting you and
bringing up to date information about insurance reform to your state!
Please check www.kelleycom.com by December to see where we will be in 2015!
Great Book I Just Read

Midnight Express [Kindle]
Billy Hayes &
William Hoffer
 
Much more than a survival book, it’s
the true story about an American enduring a harsh and dehumanizing imprisonment
in a Turkish jail in the 1970s. A gripping, unforgiving and frightening tale,
Hayes is incarcerated while trying to smuggle hash out of Turkey. Hayes ensured
five years of mind and physical torture, a labyrinth court system, watching the
anguish of his parents as he deteriorates and becomes a shadow of himself, until
his incredible escape. Hayes accepts that he broke the law and deserved
punishment, but it highlights the brutality apparent in the penal systems of
other countries, and the injustice of completing his initial sentence and
having the system overturn it and be given life. His portrayal of life in
prison is sobering and sad; his adjustment to the microsociety inside the
prison walls is fascinating. The excellent 1978 Oliver Stone movie follows the book for the
most part, but ends quite differently. Four/five stars.

Insurance Buyer Beware!

While catching up on some insurance reading, I came across this article, which gives some food for thought. I’ve been giving insurance symposia around the country, and we have been focusing this year on the “Marketplace” websites, but this never even crossed my mind!

“Buyer Beware: Obamacare creates an opening for confusion and
scams”

Kate Pickert
Government Bureaucrats aren’t the only ones preparing for a
key component of President Obama’s signature health care law that goes into
effect this

fall.

Health care exchanges, the marketplaces where people can buy
soon-to-be required insurance, launch Oct. 1, and experts warn that their debut
could create a prime moneymaking opportunity for illegal scammers and others
looking to capitalize on consumer confusion. “There are people licking their
chops and saying, ‘A sucker is born every minuet,’” says Elizabeth Abbott of
the consumer group Health Access California.
There are two main types of potential snares for consumers:
outright cons and insurance-like plans that give the impression of offering
more coverage than they actually provide. Regulatory agencies are already on
high alert for fraud. Both the Federal Trade Commission and the Better Business
Bureau have posted warnings about Obamacare-related identity theft. And in
Pennsylvania, one enterprising insurance broker set up a website with the
official state seal and the title Pennsylvania Health Exchange. The site was
removed after a warning for the state insurance department.
Some quasi-insurance products expected to proliferate come October
are ‘discount medical plans,” which promise lower health care costs in exchange
for a recurring fee. Many of these plans lure customers with language that
implies comprehensive coverage, but the reality is far more limited.
“The problem is, people pay the money, buy a plan, and when
they get sick, they find out they don’t’ have the financial security they
thought they had,” says Minnesota attorney general Lori Swanson, who has sued
several discount medial plans for deceptive market practices. Consumer
watchdogs are also wary of plans that reimburse consumers with set amounts for
doctor visits or hospital stays, regardless of the actual costs.
Obamacare bans some forms of skimpy coverage, but with
enforcement left to the states—some of which are less than enthusiastic about
the law—don’t count on those misleading plans disappearing overnight. “Will the
states crack down on them?” asks Timothy Jost, a law professor at Washington and
Lee University and an expert on insurance regulation. “Well, a number of states
aren’t enforcing the Affordable Care Act at all.”
Time August 19, 2013

Great Book I Just Read
Into the Abyss: An Extraordinary True Story [Kindle]
Carol Shaben

A small commuter plane goes down on a subzero night in 1984 in Canada; only four of nine people survive: the 24 year old pilot, the first Muslim politician in North America, a policeman and his handcuffed prisoner. The next 36 hours reveals each man’s character, impacts them for life, and bonds them to one another for life. The prisoner saves the lives of the other three and becomes a national hero. This amazing story, expertly told, delves deep into the minds and hearts of each man before and during the accident, and follows them 20 years later to see what has become of them. The incident helped to change Canadian aviation. The author is the daughter of the politician, one of the survivors. Five/five stars.

Pulse on the Road: Albany!

Laurie presents 

 We had a wonderful visit to Albany, to meet members of the New York Coalition of hemophilia organizations. Bob Graham, person with hemophilia, helped facilitate our invitation and arrival and welcomed us Sunday, March 10. It was a small gathering of families and some clinicians, who eagerly drank in all the insurance information we presented.

 Kelly Fitzgerald, associate director of government relations at Patient Services Inc. (PSI) gave everyone a 45-minute update on the Affordable Care Act. Key take-aways include:

• In 2014, everyone must have health insurance
• You may need to select your insurance in a “marketplace”
• You must read your insurance policy annually and carefully!

When is your open enrollment date?

I then gave a talk called “The Importance of Choosing a Healthcare Plan,” infused with humorous stories of my own son’s struggle with insurance (hint: good idea to have your insurance and medical mail forwarded from mom’s house to your place over a pizza shop!) and stressing that you must pay attention to open enrollment dates. Do you know yours??

Michelle Rice of NHF

Michelle Rice, public policy director of NHF, then gave her acclaimed one hour workshop on the NHF Insurance Toolkit. We passed out workbooks and calculators and I was so impressed by the audience’s dedication! Even the teens were busy crunching numbers to see how “John Doe”‘s medical expenses add up when comparing two plans.

Zoraida Rosado, who pulled
everything together!

And finally, we had a 30 minute expert panel, so the audience could ask questions of the speakers. I learned a lot. One nurse in the audience offered this excellent piece of advice: when using medical services, instead of asking “Do you accept this insurance?” instead ask, “Are you in network with this insurance plan”? This pointed question could save you so many hassles, time and paperwork!

Teens were even crunching numbers!

Families engaged in NHF’s Insurance Toolkit

Thanks to Bob Graham, the New York Coalition, my team, our guest speakers, and all the families who attended. Deepest gratitude to Baxter Healthcare Corporation for sponsoring Pulse on the Road. For more information about health care reform, visit:

•www.healthcare.gov
•www.patientservicesinc.org
•www.hemophilia.org
•www.hemophiliafed.org 

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 www.hemophilia.org 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.
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