Blog Archive

Monday, October 07, 2013

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!



























1 comment :

nissanbrown said...

Wow you are a wonderful hemo mom. I'm hoping to start visiting other places and learning more about hemophilia. My three year old has severe hemophilia A. Sometimes it can be hard, but I'm trying to educate myself more and more each day. I just began a blog myself http://nissanbrown.wordpress.com

thanks so much for your inspiration

 
Bayer