Wednesday, November 7, 2007

NHF Postmortum

Disclaimer....these are my opinions. And the opinions of my family. And a few friends I queried. I also know that blog posts with NHF, Hemophilia, HemAware, etc....are monitored by someone affiliated with NHF because I see the sitemeter stats. So, I'm also inviting any of the criticized to contact me for any clarification. I'm pretty sure they know who I am.

The Annual Meeting of the National Hemophilia Foundation is a big deal in the hemophilia community. Not only are consumers (patients, patient families) in attendance, but we also have at hand the foremost researchers present. Gene therapy researchers, hemophilia treaters, pioneers in the fields of social work, nursing, etc... It's truly an amazing chance for patients to interact with the professionals charged with shaping their care and their future. I'm not sure any other "disease state" has the same access.

So, why has this meeting become so lack-luster? Why am I meeting parents and patients who say they don't attend ANY of the sessions? They tell me that they only go so they can see friends and talk with other families. Well, hey, what a concept. Seems we could shape some sessions around THAT, huh? How about those "Rap" groups?

We didn't go to the parent rap session because it was listed as being for parents of 4-12 year olds. As much as I love meeting parents of young kids, I didn't want to sit in another session of horror stories. We've moved past that. We would've liked to talk to some other parents of tweens, though. Or parents who are getting their kids ready for college.

Why did NHF have that group all in one session? What the heck? How about a session for newly diagnosed? 0-3 year olds? 3-6 year olds? Etc..... Word is that these sessions don't yield a big enough group on their own so they split them up. But what's accomplished by putting them together? No one learns anything. And trying to moderate a session like that is impossible.

New parents need to share their horror stories. We need to hear from others who have been there. But THEN we need to move on. Diagnosis story upon diagnosis story upon diagnosis story doesn't help a family who is 3,4 years out from the diagnosis.

That's just the tip of the iceberg for me. I went to a session that said it was about "Transitions" but it was about passing out checks to chapters for their efforts in moving advocacy forward.

Where was the prophylaxis session? Port session? Self-infusion session? Co-Infection?

And I actually met a woman whose husband and son had to miss lunch because they had to go to URGENT CARE in ORLANDO to get their son infused!!!! This is just too much. This lady was in a hotel with hundreds of specialists who do nothing but treat patients bleeding disorders. She paid over $100 bucks to come to the meeting. And no one there could poke her kid for her? Or keep a lunch aside for her husband after he spent hours in the E.R.??? WTF. At least I think I convinced her that home infusion should be pursued PRONTO.

So, yeah. Not so much impressed.

But hey, those drug company and homecare company booths were stellar. And we all went to Universal for a big party on Saturday night. Except the walkways were really dark...have you ever seen a hemo with bad joints try to walk? In the dark? Uh, yeah.

And what about the layout of the meeting? Does anyone with bad joints actually visit the meeting site and think about how these people are going to get from one place to another? Damn...MY feet and knees hurt and I've never even HAD a joint bleed! How many patients inched a few thousand dollars closer to their lifetime cap because they had to infuse to 100% after the NHF meeting? DOH!

I was also disappointed that, while my kids had fun at the theme parks, they had ZERO opportunity to further their education with regards to their bleeding disorder. If this happened, it wasn't memorable to my kids, they said they didn't do anything like that. Did they get to talk about bleeds? Did a social worker do some play therapy? Did they learn about exercise and joint health? How about self infusion?

Uh no.

But hey, those families that presented on Friday morning sure were smart, funny and good looking.

You know, all I hear is "there are families out there who are clueless. They just don't know what they need to know; they are uneducated about insurance, factor pricing, 340b programs, Homecare."

Well, NO WONDER THEY DON'T KNOW! When are they supposed to learn? How can we teach them if the only time we get them together, we don't even take the opportunity to tell them about the history of this community? It's like the 80's never even happened!! That AIDS quilt shouldn't be in a corner. We need to see it front and center. Every time.

I'm really thinking I'll just skip NHF from here on out and go to HFA....that's The Hemophilia Federation of America. http://www.hemophiliafed.org/

Maybe that'll get the Fed. a few more hits. Did you know the Federation offers each vendor EXACTLY THE SAME size booth space? No more or less. Isn't that a great idea? Then we don't feel like their are more vendors, pharma and industry people at OUR meeting that consumers! I love that the Federation does this. Biting the bullet and allowing industry in was a biggie for them, this is a good way to keep things in check.

I hope the Federation will also work hard to make the meeting food allergy friendly. Several families are unable to attend NHF because NHF does not make concessions for this group. And given the number of inhibitor patients with serious food allergies, you'd think this would be happening. But it's not. Oh well, how long did it take for us to get infant and young childcare at the NHF meeting? YEARS!!

NHF....I'll be waiting by the phone.

**Oh, and don't get me started on the fact that someone from my kids' HTC made a rude comment about me to a member of a support/advocacy group with whom I'm closely aligned. Don't these people know we talk to each other??***

***I know some of my non-hemo friends are reading this and using Google to figure out our acronyms, I'll fix that. I'm just gettin' myself all worked up at the moment.

3 comments:

survivor said...

I think it says a lot that most of your complaints are about things that do not directly effect you.

thank you

Exblick said...

I think all of this affects all of us. We're only as strong as the weakest among us. And if it wasn't for survivors, my kids wouldn't be where they are. So, really, thank you.

mama o' the matrices said...

Hmm. Never made it to the NHF, but never really considered the HFA, either. And they do have a family-friendly reputation...

Exb, good points. Who on earth would lump 4 year olds in with 10-12s? Good grief, I know 4 year olds who are just getting their first big joint or muscle bleeds - it's a completely different world (she says arily, mother to a nearly six year old veteran of joint and muscle bleeds). I agree - let's group them more tightly by age, or at least by goal.

We could have the Freaking About the Diagnosis chat group, the Ready for Reality group, the School and (insert cute alliteration here) group, etc, etc, etc. Why not?

And jeez, louise, yes. Bigger - and farther apart - is not better. Clearly a good thing gotten out of hand...something like all of those glossy ads in the magazine.