National Hemophilia Foundation

Sunny Skies at NHF’s 65th Annual Meeting

Manufacturers set up large booths to view new
programs and products

I’m
still in Anaheim, about to enjoy the sunny California weather for two more
days. I’ve already 

enjoyed the past five days with my bleeding disorder
community at the 65th annual National Hemophilia Foundation meeting,
with about 3,000 colleagues, patients, families, corporations and friends.
These just keep betting better and better!
Consumers get to browse many booths
The
theme was “United in Progress,” aptly named as all the divergent groups in our
community work together to push our agenda through obstacles such as funding
cuts and insurance threats. While I could only attend a couple of sessions,
they were powerful.


Stakeholders’ Meeting
Laurie Kelley with Kevin Shaughnessy 
The
first was NHF’s Stakeholder Meeting, a comprehensive three-hour session that brought together
key opinion leaders in the US.
Laurie Kelley with Debbi
Adamkin of the Florida Chapter
Dawn
Rotellini of NHF first discussed the need to establish conflict of interest
boundaries and policies for chapters working with industry (pharmaceutical
companies and specialty pharmacies). There’s even a need to define “industry,”
as HTCs, half of which sell factor, don’t like to be included as industry. 51
chapters have different guidelines so there’s a need to standardized policies
to industry. A lively debate ensued about how to create a template and work with industry’s legal system to approve this.
Laurie with Julie Birkofer and Jan Bult
of the PPTA
Next,
we had a federal update from Ellen Riker, of MARC Associates in Washington DC.  As we all know, the federal fiscal year began October 1. And there is no
appropriations bill for health programs or agencies. So now there is an extension
of current funding levels, with a sequester likely to occur again in 2014. I was
amazed at the low level of funding for HTCs. HRSA/MCHB funding remains flat at
$4.9 million for HTCs and coordinating centers. The CDC receives approximately
$7 million (not a lot) for hemophilia for surveillance, research, outreach and
education (grants to HTCs and patient organizations, all impacted negatively by the 2013
sequester). Most alarming is that the head of CDC doesn’t think chronic disorders
should be in CDC to begin with! So new cuts are a threat. Ellen reminded us
that we would not have gotten through our HIV days without CDC; we need each
other.
An
update on HR 460 Bill, which NHF is supporting: this prevents private insurance
plans from requiring cost-sharing for drugs on specialty tiers. Only 14% of
health plans using specialty tiers; specialty drug spending represents only 2%
of overall health plan spending. NHF wants to prevent insurance plans from
putting factor in the specialty tier, where copays could be astronomical.
The legendary Barry Haarde!
Michelle
Rice gave an update on the Affordable Care Act “Marketplaces”—those websites
that will allow consumers to compare health care plans to find the right one at
the lowest cost. We learned that the Marketplaces went live just the day
before, and many crashed as huge numbers of consumers logged in!  Her own staff
went on the federal site and it was confusing. Michelle presented a great spreadsheet
that will help breakdown the Marketplace by level (denoted by “metal”—platinum,
bronze, etc), by state, etc. This will be a vital and helpful guide for those with bleeding disorders using the Marketplace. Glitches in the Marketplace include: some had navigators but called them different things, which was confusing. Some organizations
are putting up tools based on what feds said would be there but the tools
aren’t right because the feds haven’t followed through with what they said they
would provide!
Laurie Kelley withAndy Matthews
and Chad Frederickson
The
primary message was: be patient. We all have until December 15 to pick a plan for
January 1. Wait before accessing the Marketplace so the bugs can be fixed.

Laurie with hemo moms Elizabeth Pulley
and Julie Heinrich
Uniting the World
Laurie with friends from Nigeria
Another
session I attended was about the twinning program of the World Federation of
Hemophilia. Present was Megan Adediran,
my friend and colleague from Nigeria. Megan is the president and cofounder of
the Haemophilia
Foundation of Nigeria, and mother of
two boys with hemophilia. She was present with husband Thomas and another
mother of a child with hemophilia. She gave a fiery speech about the importance
of the twinning program with NHF, to close the gap between two countries, two
worlds, two different approaches to hemophilia. She related how hard the HFN is
working to reach its people in need. Nigeria is a huge country, where only
about 150 people with hemophilia out of approximately 10,000 have been
diagnosed, and where thousands more wait to be identified and helped. It could
take a lifetime to find them, but the twinning assures that we are in this
together for the long haul, United in Progress.
Laurie Kelley with the
lovable Tater, who has hemophilia
It
was a great meeting, with sessions on social media, von Willebrand Disease,
hepatitis C updates, gene therapy research, obesity, pain management and even
dating when you have hemophilia. There was something for everyone.
We’re really grateful to NHF also for allowing Save One Life, my nonprofit that sponsors children with bleeding disorders in developing countries, a table to help us gather more sponsorships. We did pick up a lot of new sponsors, hopefully helping us to reach 85 new sponsorships before December 31. Go to www.saveonelife.net if you can sponsor a needy child in poverty with a bleeding disorder!
With Debbie de la Riva, former ED of
Lone Star Chapter
It
is always wonderful to meet up with families I’ve known for so long, going on
23 years for many. One special visitor was 25-year-old Emmanuel, from Ghana,
Africa. I’ve known “Kofi” for about 5 years, when I first went to Ghana, and
now he is attending college in UC Riverside. Living so close, he was able to
take a bus, and was invited in as a guest of NHF. He has factor VIII
deficiency, and is bright, articulate and energetic. It was wonderful to have
him here, especially as he could meet the Nigerians! But I always wish more of
our own US families could attend this remarkable event. I’d like to see a way
to spend less on booths, and more on airfare and hotel for as many families as
possible, to make this truly a community event.
Laurie and Patrick Schmidt,
CEO FFF Enterprises and sponsor of
88 children with Save One Life!
NHF
did a splendid job as always of organizing this mammoth event, and we thank
everyone involved, including sponsors and supporters, for mailing this
available. See you in Washington DC next year!

Rich Pezillo, Sonji Wilkes and
Jane Smith
Laurie Kelley with Laurel McDonnell
and Paul and Linda Clement
Janie Davis of Baxter with Emmanuel
of Ghana
Laurie and Chris Bombardier at
Save One Life table
Ellen White, RN, who first “discovered”
Ghana as a country in need of our help

Save One Life sponsors gather
for coffee 
Factor Support Network displays
our books!
Bayer booth
With long time friend
Barbara Chang

Laurie Kelley with
Reid Coleman of NC
Laurie and Zoraida taking
a break
Yeah, I met Iron Man!
No trip to California
without visiting Jim Morrison in
Venice, where it all began for
the Doors!

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
hemophilia

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!

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