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NPF Capitol Hill Day Training - Shared screen with speaker view
Carin’s iPhone
52:50
FYI: My audio is off. It’s very loud where I am
Lucy Laube
57:40
We can't hear it Will
Leah Howard
01:03:41
The NPF is so lucky to have Sarah joining us in the coming weeks! Thanks for joining us tonight, too, Sarah!
Matt Werbach
01:04:10
Welcome aboard Sarah. Looking forward to working with you.
George Gondo - National Psoriasis Foundation
01:04:34
Welcome, Sarah!
Brian Lehrschall
01:04:45
Welcome Sarah
Sarah Buchanan
01:04:48
Thank you! I'm very excited to be joining such a great organization.
Jennifer Pellegrin
01:04:55
Yes welcome Sarah!
Jason Harris
01:12:33
almost 1/3 of the senate!
Michelle Strangis
01:15:49
These slides are helpful - could you send them to us?
Diana Cordio
01:16:06
QUESTIONS:1 - are the HR bill number and SB numbers the same or have they changed from previous years?
Jason Harris
01:16:08
Of course!
Diana Cordio
01:16:23
2 - are there plans of getting a CBO score?
Brian Lehrschall
01:16:54
I didn't think there was a CBO Score on Step Therapy bill
Jaime Lyn Moy
01:17:22
Do you have a list of the cosponsors? How will I know if my rep or senator has signed on?
Lucy Laube
01:17:52
Jamie - we will be sending out that information to each individual advocate!
Michelle Zimmerman
01:18:05
I looked up the bill cosponsors online to see if my members had already cosponsored.
Tami Seretti
01:18:08
If you go to Congress.gov and search the bill, there is a list of cosponsors there.
Christina Tom
01:18:21
When we meet with Congressional leaders, we cannot “ask”.
Diana Cordio
01:18:38
sorry - what does that mean, to get a markup?
Brian Lehrschall
01:18:46
https://www.congress.gov/bill/117th-congress/house-bill/2163/related-bills?r=1&s=2
Brian Lehrschall
01:18:53
https://www.congress.gov/bill/117th-congress/senate-bill/464/cosponsors
Brian Lehrschall
01:19:07
Markup means to give the bill a committee hearing
Jason Harris
01:19:08
The committee will hold a hearing and discuss the bill, including "marking up" the bill text or language
Diana Cordio
01:19:47
thx Jason
Howard Chang
01:19:49
If they cosponsored previously, but not currently, do we need to go through the information again, or should we go straight to ask to cosponsor again?
Jason Harris
01:20:25
Thank them for their past support and ask for cosponsorship again!
Tami Seretti
01:20:25
I also make sure to let the reps know that step therapy is not limited to psoriasis, but is in virtually every chronic disease.
George Gondo - National Psoriasis Foundation
01:20:50
YEs, great point, Tami
George Gondo - National Psoriasis Foundation
01:22:00
Some offices may have even assisted a constituent work through an issue with step therapy for another chronic disease. It is common in the oncology/cancer community.
Steven F.
01:24:28
or your biologic is stopped suddenly, which occurred to me
Tami Seretti
01:25:45
It's not even just biologics anymore...my CAAP charges the same monthly for Otezla now as it does Enbrel or Humira.
Brian Lehrschall
01:26:05
https://www.senate.gov/general/committee_membership/committee_memberships_SSHR.htm
Michelle Strangis
01:26:11
Why does the patient stop getting copay assistance?
CatK
01:26:20
McEachin is our House rep! 🙌
Lucy Laube
01:26:38
Michelle sometimes the copay assistance program has a maximum where it runs out
Steven F.
01:26:59
Every co-pay assistance is structure differently, in my case it capped out
Michelle Strangis
01:27:03
Thank you
Brian Lehrschall
01:27:21
https://edlabor.house.gov/about/membership
Tami Seretti
01:29:20
Is it okay to refer our reps to contact reps from the state who are both committee members and cosponsors of the bills? This came up in the state day I just attended.
Shelley Jeltema
01:29:52
This EHB is very critical and hits people very hard. My ACA plan is hitting me hard on this. The labs required for my medication are NOT covered until the out-of-pocket-maximum is met. That is $700 at a shot.
Jason Harris
01:30:57
Tami - we can discuss that offline!
Jason Harris
01:31:15
Great point Shelley. It is very important.
Jaime Lyn Moy
01:31:26
Is there a list of states that have passed similar copay accumulators legislation?
Tami Seretti
01:31:43
Thanks Jason!
Jason Harris
01:31:53
Yes @Jaime - we'll provide that for everyone
Mollie Carman
01:32:06
great question Jaime!
Sam Cox
01:32:08
AZ, AR,CT,GA,IL,KY,LA,NC,OK,TN,VA,WA,WV
George Gondo - National Psoriasis Foundation
01:32:21
• Washington• Arizona• Oklahoma• Louisiana• Arkansas• Illinois• Kentucky• Tennessee• Georgia• North Carolina• West Virginia• Virginia• Connecticut• Puerto Rico
Brian Lehrschall
01:32:37
Thanks George!!!!
George Gondo - National Psoriasis Foundation
01:33:20
I got the list from Lucy for our upcoming survey
Jaime Lyn Moy
01:33:41
Dang it! I thought the work I helped with last year in Michigan led to legislation. Grrrrr
George Gondo - National Psoriasis Foundation
01:33:57
In addition, not all providers feel comfortable prescribing biosimilars.
Sam Cox
01:35:05
Jaime, we are working very hard on HB 4353 in MI. A lot happening. Let's touch base offline. There's still hope!
Michelle Zimmerman
01:38:25
Our power is in our stories. Sharing my stories and making these issues related and real is what will influence my lawmakers.
Jason Harris
01:38:49
Perfectly said
Brian Lehrschall
01:39:52
One tip for everyone. I have been going to these Capitol Hill days for 20 years. The first question I always ask is Do you know about psoriasis or do you know someone with psoriasis? You'll be surprised what you might learn.
George Gondo - National Psoriasis Foundation
01:42:32
https://www.psoriasis.org/capitol-hill-day-volunteer/
Diana Cordio
01:42:41
here here Rick
Sam Cox
01:42:50
Thanks George!
George Gondo - National Psoriasis Foundation
01:43:58
And individuals with disability who receive SSDI.
Brian Lehrschall
01:45:56
I am on disability and SSDI and this is a huge issue for me
Jason Harris
01:46:24
Thanks George and Brian - really important point.
Mollie Carman
01:46:28
I'm sorry Brian. 😞
Mollie Carman
01:46:40
This makes me crazy
Christina Tom
01:51:30
Can soapbox provide us with the staffer’s name from last year CHD? I am meeting with the same offices
Jason Harris
01:55:47
We'll check with them Christina - I think so.
Jason Harris
01:56:31
May be biased - but I think the shirts came out amazing.
Michelle Zimmerman
01:56:35
Will someone cover a meeting if I can't be in one that has been scheduled?
Jason Harris
01:57:06
@Michelle - yes - we can confirm that over email to make sure we have coverage!
Michelle Zimmerman
01:57:21
👍
Brian Lehrschall
01:57:21
Make sure you ask before you do that. Not all staffers or members will approve that
Mollie Carman
01:57:27
I really like the t-shirt Jason!
Erin Kearney
01:59:06
Last year I remember each team member was dedicated to talking about one specific issue in each meeting. Will it be that way again and if so, how do I know which topic I will cover?
Steven F.
02:02:22
are visuals permitted, as they speak louder than words, as long as not gory
Sarah Buchanan
02:02:35
Great point about sharing your story, Will! I hear from staff all the time that want to know how these policies (or the status qou) actually impact real people.
Will Hubbert
02:03:07
Erin- great question! We will breaking down issue by advocate. Stephen- depends on the visual aid- let's talk later?
Erin Kearney
02:03:36
Thank you, Will!
CatK
02:03:43
THANK YOU to our NPF Advocacy Team for all your hard work on our behalf -- we appreciate you! 💙🙏🧡
Tami Seretti
02:04:04
What Cat said!
Diana Cordio
02:04:22
☝️
Mollie Carman
02:04:27
I didn't vote mine in 😢
Mollie Carman
02:04:53
just being funny
George Gondo - National Psoriasis Foundation
02:05:01
Sometimes they can surprise you on these issues, though.
Shelley Jeltema
02:05:01
But they still work for YOU!
Jordan Ellefsen
02:05:02
The staffers want to make a name for themselves. Be a resource!
Mollie Carman
02:05:11
just a joke
Diana Cordio
02:05:13
but also, don't mention that in your meeting
Leah Howard
02:05:16
Steven, we've had a number of advocates over the years show photos of their disease when it wasn't as well managed. This has been helpful and you are welcome to share photos like that of yourself.
Diana Cordio
02:05:17
LOL
Mollie Carman
02:05:20
hahaha
Mollie Carman
02:05:27
just kidding
Mollie Carman
02:05:31
omg
Shelley Jeltema
02:06:01
I didn't vote and won't vote for my Senators. But I still work with them on other issues.
ksouthwick
02:06:13
the virtual happy hours are a great idea!
Mollie Carman
02:06:27
omg- I was being silly
Mollie Carman
02:06:34
wow
Steven F.
02:07:05
ok, will figure it out with those in charge,
Diana Cordio
02:07:22
Stephen K - I think there's something wrong with your mic
Diana Cordio
02:09:41
RE: Soapbox - I may have missed it, but when I get to the start page, I see this: "Type your Mobile Code in the box below, then press the Get Schedule button."Where do I get my Mobile Code?
Jason Harris
02:10:07
Kevin from Soapbox will present right after this... and im guessing will have an answer for you!
Will Hubbert
02:10:18
Great question Diana! I'm going to defer on that, because the last thing set for this evening is a breakdown of Soapbox staff
Will Hubbert
02:10:32
*from Soapbox staff, sorry!
Diana Cordio
02:10:58
ok, I just saw some folks referring to their scheduled in chat, so thought I may have missed something previously covered...in an email? 🤷‍♀️
CatK
02:12:10
@ diana -- look for email from Soapbox. mine came today!
Diana Cordio
02:12:47
will do!
Steven F.
02:13:01
Two ways, on computer I used link and code was already filled in. I just hit enter I also had a code emailed for a link to mobile platform
Diana Cordio
02:14:26
Doggie is having zoomies time!
Michelle Zimmerman
02:15:19
Will NPF/Soapbox provide us with information for sending post meeting thank you notes to those we met with?
Will Hubbert
02:15:49
Hi Michelle- we will facilitate those follow-ups
Michelle Zimmerman
02:15:59
👍
Diana Cordio
02:18:54
No emails, and also just entered my cell with and without hyphens. No dice. 😟
Mike Kammer
02:21:44
I've got the same problem as Diana. I haven't gotten any e-mails from Soapbox. Thanks!
Mollie Carman
02:21:52
since there's no time- to the group: I apologize for my joke. I have done this a lot and I take it very seriously and I have been meeting with my representatives locally for a very long time. I started meeting with Sen. Crapo right after my diagnosis in 2002. Now here I am facing open heart surgery at 60. The spondylitis that I have is known to cause valve disease. It is Psoriatic axial spondylitis. Life is too short to not laugh. Keep it light, it doesn't mean you don't care. Again- I apologize.
Michelle Zimmerman
02:22:00
Does HLA by a person you are meeting with mean health legislative assistant?
Diana Cordio
02:22:47
Yes Michelle
Jason Harris
02:22:49
Meeting feedback is so important!
Michelle Zimmerman
02:23:02
Thank you, Diana.
Jason Harris
02:23:53
Mollie! No worries at all!! Don't feel bad. We were just clarifying :)
Will Hubbert
02:23:54
Hi Mollie-- we completely understand. Please know that we didn't take offense, just wanted to clarify for first-time attendees that their vote isn't something that should come up in these calls!
Lucy Laube
02:24:21
^Exactly what Will said
Diana Cordio
02:24:27
Be mindful of your background...as in if you have a virtual background (like I often do) that may not be meeting appropriate
Mollie Carman
02:24:58
thank you Lucy, Will, and Jason 🌻❤
Jason Harris
02:25:09
And Sam!
Jason Harris
02:25:12
Thank you Mollie
Tami Seretti
02:25:53
Will we be able to stay logged in for all meetings, or do we need to log in individually to each meeting?
Erin Kearney
02:27:26
Thank you, Kevin!
Diana Cordio
02:27:33
Diana Cordio
Tami Seretti
02:28:02
Yay! Thank you!
Mike Kammer
02:28:14
Michael Kammer from New Jersey. I don't have my code
Michelle Strangis
02:28:19
Thank you NPF staff
Kevin Schultze
02:28:28
If anyone has troubles with practice session, call Soapbox Help Desk at 202-362-5910
Mike Kammer
02:28:32
thank you
Kevin Schultze
02:28:44
Michael, I’ll type your code here.. coming up
Kevin Schultze
02:29:06
Michael, go to www.sboxmobile.com and plug in your code: HH730452
Diana Cordio
02:29:22
Diana Cordio CA - have not received my code
Kevin Schultze
02:29:32
Diana Cordio: HH730440
Diana Cordio
02:29:54
Thank you Kevin - I'm in!
Will Hubbert
02:30:00
If you need a cheat sheet to see the asks, talking points, and more during your group meeting, please refer to the materials on this page: https://www.psoriasis.org/capitol-hill-day-volunteer/
Kevin Schultze
02:30:06
Diana, it’s my pleasure. You go to www.sboxmobile.com and plug in that code
Mollie Carman
02:30:29
thank you Jason, Will and Lucy