Welcome to the Jungle, I mean, Marketplace

This past week I
attended a useful and interesting meeting, NHF’s Social Worker Insurance Marketplace Workshop (funded by Baxter Healthcare and Pfizer Inc; thanks guys!).
Together with about 80 social workers from HTCs around the country, and some
chapter leaders, we listened to various consultants and government
representatives speak primarily about the “Marketplace,” the website of the Affordable
Care Act that allows people to choose a healthcare plan.

We’ve all heard
about the difficulties in dealing with this website— healthcare.gov—such as the
crash, and various other glitches. The good news is that many of these glitches
have been fixed; and now it’s time to get our bleeding disorder community on
board. Healthcare insurance is mandatory now; all US citizens (with notable
exceptions) must have insurance. The website is created to help people find the
lowest cost insurance that also provides all their essential healthcare needs.
Crafty Posters were created to help us visualize; good idea,
we needed the help!

There is plenty
of assistance in navigating the website. We actually tried the website live,
and it was pretty interesting, and yes, we even got stuck once or twice! For
us, we were stuck trying to find out if our HTC hematologist was in-network.

Each website
will have on-line or Internet guides, to help you live. They are called various
names: Assisters, navigators, certified application counselors, in-person
assistance, marketplace call center, agents and brokers. Most people are used
to calling them “Navigators.” (I can’t help but think of “Engineers,” a la
Ridley Scott’s Prometheus)
Navigators, Engineers: whatever you
call them, they are here to help

Jim Romano, from Patient Services Inc (PSI), gave a
presentation about how PSI has been chosen to train qualified applicants to
become  Certified Application Counselors (CAC), to
help people navigate the Marketplace. This is truly a great coup for PSI, and I
can’t think of any other group better qualified to train. PSI will train CACs
in different states, and pay their fees (yes, you have to pay for the pleasure
to become a CAC to help people navigate their state Marketplace! One point from
an audience member who underwent the training: the training wasn’t very
hemophilia-focused, and needs to be more focused.

Jim noted that there were still some
difficulties to overcome in each state. Ed Kuebler, a social worker from Texas,
slyly asked, is the difficulty level in some states… political? This garnered
many laughs! Ya think?

There are many
marketplaces, as each state as their own. All the marketplaces have different
funding sources, based on what type of marketplace it is:

FFM: Federally facilitated marketplace
SPM: State partnered marketplace. The federal government has some role
in this.
SBM: State based marketplace and the fed has no role in it.
How many people
have enrolled since the site was unveiled in October?
Dec 28: 6 million Americans gained coverage through Marketplace and Medicaid
2.2 million of those enrolled in private plans
80% received help in paying for premiums
53 million visits to healthcare.gov and state marketplace websites
11 million calls to the federal and state call centers
healthcare plans are designated by “metal.” The more precious the metal, the
higher priced the plan, but also the more coverage. Enrollment by Metal?
are choosing Silver plans
20% Bronze
13% gold
7% Platinum
1% catastrophic plans
Ed Kuebler thinks we need more help than
navigators (kidding–a gift from a friend)

There are still
consumer problems using the Marketplace:
inability to complete application on line

get “stuck” (freeze) or lost
is not transmitted after the plan is submitted
not sure you’re insured, call insurance company (not the website) to check
you don’t pay 1st month premium by certain date, you will not get
Don’t despair! I
found it actually fun to hop on Colorado’s state Marketplace and select a plan.
Another useful
website is Marketplace.cms.gov, which has FAQs, tip sheets, paper application,
and materials in Spanish. And Healthcare.gov, which does premium estimate, on
line application. When you log on, you will see this banner!
Michelle Rice (L), Mary Garvey (R) of NHF; Tiara of PSI (C):
all great speakers and resources!

Enroll by February 15 for
coverage starting March 1
So contact your
social worker for help if you are not yet enrolled; don’t miss the deadline!
Next week I will
cover more of the NHF Social Worker Insurance Marketplace workshop.

Genotyping: Helping You, Helping Our Future Families

Laurie Kelley with Cindy Komar

I attended the excellent annual meeting of the Arizona Hemophilia Association this weekend, invited by Cindy Komar, executive director and mother of a child with hemophilia. (Cindy is an awesome exec director and lady, if you haven’t met her!) It was great to catch up with so many Arizona families I know.

I did the keynote presentation yesterday but I myself didn’t find that half as interesting as a fascinating new program for families with hemophilia: called “My Life, Our Future.” The name is a bit nebulous, but the program is important. NHF has teamed with Biogen Idec, Puget Blood Center and ATHN to create the first genotyping of families and patients with hemophilia in the US. John Indence, from NHF, and Jennifer Dumont, director of scientific affairs from Biogen Idec Hemophilia, presented.
John summed if up first: this is NHF’s most important project. One blood sample per patient will reveal vital information on the patient’s specific hemophilia type, propensity to develop inhibitors, and more. A short movie featured NHF CEO Val Bias, who stated that this will help families understand their personal genetic profile, and also help researchers learn more about the genetics of hemophilia, as the data will be pooled. Best of all, the testing will be offered at no or low cost.
John explained how ATHN currently holds the most information/data on hemophilia patients in the country. Information is supplied from HTCs, who obtain patient consent; privacy of course is key, and ATHN assures complete privacy. And Puget Sound is one of the top HTCs in the country, and one of the top genotyping centers.
Laurie with Rachel Stuart, RN

John noted that everyone in Spain and Ireland has been genotyped, and it’s time for the US too. As early as 1998, MASAC (NHF’s Medical and Scientific Committee) advocated for genotyping. IN 2008, the initiative got a boost when the Genetic Information Nondiscrimination Act (GINA) was passed, making it more reassuring for patients to share their personal health information.

In 2002, the human genome was sequenced at a cost of $3 billion; now, genotyping is much cheaper and the price per family keeps dropping. Genotyping helps uncover the causes of disorders, like hemophilia. It requires an analysis of the population, not just the individual, and the purpose of testing the individual is to aggregate the data to study the entire population. So, this new program requires the data of thousands of participants!
Jennifer Dumont then spoke and gave an excellent description of how genotyping works. She noted that 99.9% of our genetic makeup is the same! It’s the 0.1% that makes us all different. A genotype is “a description of the gene mutation that is caused by a certain condition or disorder.” A mutation is a change in the DNA sequence of a gene. It can happen in different ways: nucleic acids can be inserted, deleted or substituted in DNA, leading to a misreading of information in directing cells how to function.
There are diseases where one mutation leads to one disease, such as sickle cell anemia. Hemophilia is different: there are many possible mutations, such as missense, nonsense, frame shift, deletion and insertion. For factor VIII and hemophilia A, there are 2,513 currently identified mutations; for factor IX, there are 1,094 currently identified mutations.
Jennifer illustrated what each mutation might be like if we used a sentence as a DNA sequence (three-letter words are similar to the DNA sequence of three-letter codes): “The One Big Fly Had One Red Eye.” Each mutation makes the sentence read strangely! The body can’t figure out how to produce factor properly when the instructions are so scrambled.
After the presentation, some great questions were asked, such as will Spanish-speaking services be included in the program to help Latino families? Answer: not at the present but this is something that NHF is keenly aware of.
The majestic red rocks
of Arizona
Deena Lapinski
and Laurie Kelley
Another question: If HCPs (Heath Care Providers)  know the risks of inhibitors from the genotyping, what can be done to prevent them form happening? Will it affect choice of product or treatment? Jennifer replied that it shouldn’t affect choice of product since there is no difference in the incidence of inhibitor development with different products, but physicians may closely monitor people in the first several exposure days to factor and possibly change how they dose if there is a known risk of inhibitors.
John also mentioned that if you’ve been genotyped before outside this program, you’d need to be genotyped again. And someday NHF hopes to open the program to those with VWD and other bleeding disorders.
With the BioRX ladies!

The presentation was well done and gave rise to much discussion. The bottom line: to support NHF’s research efforts on the causes of hemophilia and its functioning, something that may help future children by our research now, ask your HTC how to participate in the genotyping program “My Life, Our Future.”

Great Book I Just Read
Gifts from Eykis by Wayne Dyer

In this fictional tale, the narrator somehow visits an identical civilization to Earth’s, in every way, though he is on Uranus. But he learns that the thought processes and psychological lifestyles of these people are strangely different. They experience positive human emotions naturally. They experience negative human emotions only through machines designed to elicit them (very creatively told!). On Earth, we create negative emotions when they don’t really exist, or don’t need to exist, because there is no external “machine” that prompts them. Jealousy on Uranus is caused artificially. The parable is that we create our own misery and can just as easily rid ourselves of it through free choice. Eykis, a beautiful Uranian inhabitant, comes to Earth to observe and then leave us her gifts of observation, in how we can take advantage of our freedom not to engage in negative thinking, such as anger, anxiety, fear, jealousy, and above all, blame. Everyone is responsible for their own emotions. Great story, simply told, easy read, powerful message. Four/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:


The Power of the Common Person: NHF’s Washington Days

Laurie Kelley with Debbi Adamkin,
 executive director of Florida chapter,
mother of a child with hemophilia (and dear friend!)

Don’t be nervous!
Ellen Riker told the attentive audience of first-timers at NHF’s Washington
Days on Wednesday, February 27. I was thrilled to be among the first-timers.
And I took a lot of heat for that. For all I have traveled the world, and been
involved with our community for about 24 years, I have never attended
Washington Days! I’m usually in a developing country, as winter provides mild
temperatures overseas. But now, I’m hooked on Washington Days and can guarantee
I’ll be back.

We are blessed to have
Ellen Riker on our side!

Washington Days originally began by HTCs in the 1970s, to
secure more funding. Many of their services were not billable to insurance,
like those for social services and physical therapy. Soon, National Hemophilia
Foundation (NHF) and the HTCs joined forces to help advocate for the HTC
comprehensive care model and in 1975, successfully secured funding. Now, groups
of patients and families with hemophilia come from all states to meet with
their representative and senators to speak with one voice about securing
funding and preserving care. This year? The largest turnout yet with over 340
people ready to lobby, from nine-year-old Peyton Brush of Texas, who has
hemophilia, to, well, people in my
age group!

NEHA ready to lobby!

The next speaker, Joanna Gray, told us “You’ll never be
alone when you lobby.” I originally thought we had to meet with our reps solo! But
we would go as a regional or state group. “And meeting with the staff is more
important than meeting with a senator.” I looked at my agenda and we would have
seven meetings in seven hours on Capitol Hill!

The next speaker Wednesday night was Travis Albright, an
articulate young man from Michigan who serves as an aide for representative Gary
Peters. He advised, “Lobbying can be intimidating, but you are the most important person there. You have a story to tell.
I would prepare facts and figures when I would lobby, but the [hemophilia] camp
stories I told made the biggest impression. Every representative in the House
represents 600,000 people. You represent your community, which is small. You
have awesome power to speak for everyone.”
Laurie Kelley: first time lobbyist!

And Michelle Rice, director of public policy at NHF, stunned
us by saying “We have 220 visits scheduled for tomorrow!”

I have met with Prime Ministers, Health Ministers and even
many celebrities. No problem. But I have never once met with my representatives
or senators, and I was feeling nervous! All the speakers put me at ease, and it
helped to know I was going with my local group, New England Hemophilia Association
(NEHA), an experienced lobby group.
That night we gathered in the Marriott lobby bar to greet
old friends, meet new ones, laugh and get ready for the big day.
Laurie Kelley with Jose de la Riva,
chair of NHF, father of son with

On Thursday the weather was sunny and brisk. You can do a
lot of running around on Capitol Hill trying to meet with your representatives.
We rehearsed how we would all present our two main concerns: Kevin Sorge,
executive director of NEHA, would introduce us and outline why we were here: 1)
To maintain the $4.9 million level of funding for HTCs from HRSA, and 2) to
request co-sponsorship of H.R. 460, the Patient Access to Treatments Act, and
more superficially, to keep hemophilia drugs from becoming tier 4 reimbursable.
As tier 4 drugs, the co-pays would be outrageously high, with patients required
to pay 25-33% of total costs, truly unaffordable for anyone. This could lead to
abandoning prophylaxis and not allowing out children to do sports or travel.

NEHA meeting with Jim Gordon of rep. Stephen Lynch
Nothing stops these guys from lobbying!

Then I would give a quick rundown on Hemophilia 101. Showing
my photos of children overseas with swollen joints or head bleeds really drove
home how treacherous hemophilia can be. Then, Greg Price, who has hemophilia, would
discuss HTCs, and share his own personal perspective on them. Diane Lima,
mother of Jonathan and Andy, would share her experiences with insurance costs and
the boys’ quality of life. She created very effective laminated cards on each
boy that were teaching tools for the high cost of care. She left behind copies
for each representative. Ian Muir, another person with hemophilia, also shared his
personal story. Finally Kim DeAngelis, Ph.D., board member,
summarized beautifully the main points and what we needed from the
representative. It all went like clockwork!

We had excellent meetings. We noted that some of the representatives’
aides were more observant, some were extremely engaged, some chatted about their
own experiences in healthcare system, but all expressed an interest in supporting
our causes. We can’t say definitely, but I think we scored a couple of co-sponsorships
for H.R. 460! I was deeply impressed by the mostly young aides: how
intelligent, poised and responsive they all were.
Mother Diane Lima explains
healthcare costs for hemophilia

It was an intense and long day. Lunch in the Capitol was
hectic, crowded and noisy. Decorated generals huddled in talks next to chatty
tables of young people. Our feet were tired and eyesight blurry by the time we were
done. We had a wonderful dinner, more speakers and then back to the bar to
complete evaluations and follow up items. Thank you emails or notes are vital.
I would be sending out copies of my book Raising a Child With Hemophilia to
each person we visited.

Laurie Kelley with NHF CEO Val Bias

I cannot praise NHF enough for their fantastic organization
of this event. It went without a hitch, and everyone worked hard and yet had a
great time. I’m hooked. I’ll be back next year. And I’ll be watching the
political fallout of the budget deficit management much more carefully, now
that I’ve dipped my toe into the political waters of hemophilia reimbursement.

NEHA meetings Joe Kennedy III

To see all the photos, go to http://lakelley.smugmug.com/Events/Washington-Days

Great job NHF!

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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