Latest / OneLegUpAlex Media / DDNC Washington Representative Dane Christiansen Recaps Spring Public Policy Forum with OneLegUpAlex 3-12-25

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DDNC Washington Representative Dane Christiansen Recaps Spring Public Policy Forum with OneLegUpAlex 3-12-25 · OneLegUpAlex Media

• 0:00
  Speaker 1: Here's your host, Alex Dearren.
• 0:07
  Speaker 2: All right, well we are back here on the One
• 0:09
  Speaker 2: Leg Up Network. I'm Alex Garrett and you might have
• 0:12
  Speaker 2: heard my episode recapping the entire event that we did
• 0:16
  Speaker 2: in Washington, d C with the d DNC. Well, now
• 0:19
  Speaker 2: I have Dane from the d DNC on my show.
• 0:23
  Speaker 3: How are you, Dane?
• 0:24
  Speaker 1: I'm doing well.
• 0:25
  Speaker 4: You know, it's DC is a little chilly, but it's
• 0:28
  Speaker 4: always nice when you have advocates visiting to kind of
• 0:31
  Speaker 4: warm things up and bring some good cheer to the
• 0:33
  Speaker 4: Capitol Hill.
• 0:34
  Speaker 2: Dane Christians, if I'm not mistaken, you are the Washington
• 0:38
  Speaker 2: representative for DDNC and you have your pulse, your finger
• 0:42
  Speaker 2: on the pulse of everything going on with these issues.
• 0:45
  Speaker 2: First of all, maybe for those who don't know, why'd
• 0:47
  Speaker 2: you get so interested in this in this cause?
• 0:50
  Speaker 1: Yeah, of course.
• 0:51
  Speaker 4: So I've been doing this work since two thousand and four.
• 0:54
  Speaker 4: I've been on Capitol Hill for about twenty years now.
• 0:57
  Speaker 4: My congressman was a guy named John Porter from the
• 1:00
  Speaker 4: North side of Chicago. And John Porter led a committee
• 1:04
  Speaker 4: that funds medical research, the NIH, the CDC, public health programs,
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  Speaker 4: and you know, now I believe and has a building
• 1:11
  Speaker 4: named after him on the NIH campus. But it was
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  Speaker 4: a very exciting time. We had just mapped the human genome.
• 1:17
  Speaker 4: We were going to cure many different illnesses. Biotech was
• 1:20
  Speaker 4: a new frontier in medicine. We had moved on to
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  Speaker 4: kind of new innovations and life saving and life supporting care.
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  Speaker 4: And of course, you know, in just an example of
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  Speaker 4: how this all works incrementally, of course, when we talk
• 1:34
  Speaker 4: about mapping the human genome, now twenty years later, the
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  Speaker 4: first products are coming to market. So it's a very
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  Speaker 4: long pipeline and a very and one that you have
• 1:43
  Speaker 4: to stay dedicated to, but also one that I've been
• 1:45
  Speaker 4: interested in my entire life.
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  Speaker 2: And in this pipeline I'm guessing is the you know, research,
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  Speaker 2: all the funding and all that, and really the knowledge
• 1:54
  Speaker 2: and research that goes into all this I want to
• 1:57
  Speaker 2: bring on specifically this week because yes, they're just top
• 2:00
  Speaker 2: gap measure in place. I always thought Congress was literally
• 2:05
  Speaker 2: just kicking the can down the road when it comes
• 2:06
  Speaker 2: to some of these things. But being at your forum
• 2:09
  Speaker 2: open my eyes that no, every stop gap, even if
• 2:12
  Speaker 2: it doesn't move forward everything, it is important because it
• 2:16
  Speaker 2: keeps the funding currently in place.
• 2:17
  Speaker 3: Am I right? Yes?
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  Speaker 4: So what they're on right, So the federal government's fiscal
• 2:22
  Speaker 4: year starts October first. I apologize if any of this
• 2:25
  Speaker 4: is to Civics one oh one, But the Congress has
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  Speaker 4: the power of the purse. Only the US Congress can
• 2:31
  Speaker 4: take money out of the treasury. It can use taxpayer resources.
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  Speaker 4: They fund medical research, They fund the FBI, they fund
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  Speaker 4: the Department of Agriculture, They write something called appropriations bills.
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  Speaker 4: Congress for many years does not finish their work by
• 2:45
  Speaker 4: October first, when the fiscal year starts. They usually finish
• 2:48
  Speaker 4: their work by December twentieth, when they're trying to get
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  Speaker 4: out of town at the end of the session. This
• 2:55
  Speaker 4: last year, though they didn't finish their work, they passed
• 2:57
  Speaker 4: on October first, something called the continuing keeps the government
• 3:01
  Speaker 4: funded at the previous year's level, so everything stays the same.
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  Speaker 4: And then they now they on December twentieth, they passed
• 3:09
  Speaker 4: another one till March fourteenth. The new Congress had to
• 3:12
  Speaker 4: figure out how to deal with this. The new Congress
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  Speaker 4: is now hurtling towards Friday and figuring out what bill
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  Speaker 4: they're going to pass. They can increase medical research, they
• 3:22
  Speaker 4: can decrease it, they can do any number of things.
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  Speaker 4: They listen to their constituents. But what they're trying to
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  Speaker 4: do right now, the easiest thing, since they don't have
• 3:29
  Speaker 4: a lot of time, is probably just keep everything the same.
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  Speaker 4: But in order for them to do that, the bill
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  Speaker 4: has to pass, the House, has to pass, the Senate
• 3:36
  Speaker 4: has to be signed by the presidents. They need everybody
• 3:38
  Speaker 4: to kind of reach agreement in a very short order.
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  Speaker 2: In that very big way, not only were we fighting
• 3:44
  Speaker 2: for the future, right so we were sort of fighting
• 3:46
  Speaker 2: for these bills to be reintroduced or introduced on this floor,
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  Speaker 2: but you're also fighting to keep the current.
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  Speaker 3: It is a fight every day, isn't it, dangou Yes.
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  Speaker 4: Yeah, and they do. They add things to those bills.
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  Speaker 4: So right now, course it's how much for medical research,
• 4:02
  Speaker 4: how much for public health? And the easiest thing might be, say, well, geez,
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  Speaker 4: why don't we just leave these at the f y
• 4:07
  Speaker 4: twenty four levels. Never a great situation. You have inflation,
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  Speaker 4: of course, so you lose a little bit of purchasing
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  Speaker 4: power if you don't have an increase, and that would
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  Speaker 4: be true for everybody, you know, all programs would stay
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  Speaker 4: the same, but they also add in policy things that
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  Speaker 4: are timely. They might add in the fixed to Medicare
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  Speaker 4: physician reimbursement. They might add in extensions to telehealth so
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  Speaker 4: people can keep seeing their doctor.
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  Speaker 1: You know, these are all.
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  Speaker 2: That's so huge because people may not be able to
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  Speaker 2: get out of their house. Yeah, telehealth measures are so important.
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  Speaker 4: But the important thing is you don't need to tell
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  Speaker 4: your members of Congress do this, that or the other thing.
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  Speaker 4: If they know telehealth is important to you, they will
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  Speaker 4: look for ways to pass it, which means they might
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  Speaker 4: do an extension in this package that's coming up. You
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  Speaker 4: don't have to be the expert that says I need
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  Speaker 4: you to do an amendment or any of this stuff.
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  Speaker 4: You just need to say this is important to me.
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  Speaker 4: It's really on them to figure out how to get
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  Speaker 4: it done.
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  Speaker 1: On your behalf.
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  Speaker 2: Talk about the work that we all did last week.
• 5:00
  Speaker 2: Go in these different offices. Firstly, to have these relationships
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  Speaker 2: with the stat with the Senate, and the staffers on
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  Speaker 2: the House and the staffers. As someone who's the represented,
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  Speaker 2: must mean a lot to you because look at the
• 5:11
  Speaker 2: work that's being able to be done through these relationships.
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  Speaker 2: But I did notice they focus more on the Democrats.
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  Speaker 3: Is that.
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  Speaker 2: Why is it, because, no matter what they say, to
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  Speaker 2: always be an ear in the Democrats ears important as
• 5:23
  Speaker 2: much as the Republicans.
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  Speaker 4: Absolutely all. I think there's a couple of things. One is,
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  Speaker 4: you know, if I called them up and said, hey,
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  Speaker 4: I would love to come by and talk to you
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  Speaker 4: about this, they would say, that's great, but we're too busy.
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  Speaker 1: Can you just send me an email?
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  Speaker 4: They want to see you when you're in town. It
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  Speaker 4: means an awful lot that you flew to DC, that
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  Speaker 4: you took the time to speak with them, that you're
• 5:43
  Speaker 4: their constituent. If they they say, if you're traveling here
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  Speaker 4: to talk about this, it must really matter to you.
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  Speaker 4: They know that it's not easy, you know, for many
• 5:51
  Speaker 4: folks to get here, to spend a day walking around.
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  Speaker 4: So and this is what they're here for. It's a
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  Speaker 4: resource that not everyone takes advantage of. But the offices
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  Speaker 4: are here to accept your input.
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  Speaker 1: The reason it might.
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  Speaker 4: Seem to skew a little Democratic is, you know, lots
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  Speaker 4: of folks live in like large urban and suburban areas.
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  Speaker 4: Sure you might be close to an airport or the
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  Speaker 4: train station, and that might have more likely to have
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  Speaker 4: a Democratic member. We do have plenty of folks that
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  Speaker 4: we're visiting with Republicans as well, so it's bipartisan by cameral.
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  Speaker 4: But the important thing is the fact that you're there
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  Speaker 4: constituent is why you know they want to see you,
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  Speaker 4: and that represents both the House and Senate and Democrats
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  Speaker 4: and Republicans.
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  Speaker 2: Now, you mentioned it very interesting in our forum on
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  Speaker 2: the Sunday, which is you could hold up the sign
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  Speaker 2: even though you're not going to do that one and
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  Speaker 2: you're meet with them. We can say I'm zye and
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  Speaker 2: hold up signs, but we're not like that. So how
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  Speaker 2: does the d DNC sort of recruit those that may
• 6:41
  Speaker 2: want to protest? But I think this is a better
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  Speaker 2: way to protest or at least bring awareness, right rather
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  Speaker 2: than holding the sign, you're actually in their opposites.
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  Speaker 3: That's a better way to do it.
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  Speaker 4: Yeah, there, I mean, there's a difference between activism and advocacy.
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  Speaker 4: You know, activism might be great at raising awareness, which
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  Speaker 4: is important too, but advocacy is a little different. So
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  Speaker 4: if you even there's a process that happens, the process
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  Speaker 4: is member driven and the members are driven by their constituents.
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  Speaker 4: So if you want more money for medical research, or
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  Speaker 4: you want to prevent cuts to Medicaid, for example, talking
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  Speaker 4: to them now at certain points of the process matters.
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  Speaker 4: If you show up in October and say I wanted
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  Speaker 4: to talk to you about this, they would say, geez, well,
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  Speaker 4: I wish you would have you know, you would have
• 7:21
  Speaker 4: stopped buy in March. So there's timing to some of
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  Speaker 4: this and we help with that. It's connecting them with
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  Speaker 4: simple things like when they're working on these spending bills.
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  Speaker 4: But yes, the important thing to remember is the squeaky
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  Speaker 4: wheel does get the grease. If people come in and
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  Speaker 4: say I need you to support medical research, any office
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  Speaker 4: Democrat or Republican Senator representative is gonna say, Okay, this
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  Speaker 4: is going to be one of my top priorities because
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  Speaker 4: my constituents are telling me medical research matters and they
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  Speaker 4: care about this, and I know some conditions.
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  Speaker 1: Are quite rare.
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  Speaker 4: We would tell people if you're a rare community, it's
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  Speaker 4: all the more important that they know who you are
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  Speaker 4: and who you represent, because they can be your champion.
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  Speaker 4: But they probably wouldn't have that information if you weren't
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  Speaker 4: bringing it to them.
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  Speaker 2: All right, talk to me about the bills that we
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  Speaker 2: were advocating for down in DC. I've sort of covered
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  Speaker 2: that on my show, but I feel like I could
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  Speaker 2: only give it from the rah Rah, let's get these
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  Speaker 2: on the house poor perspective.
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  Speaker 3: You really know these bills inside and out.
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  Speaker 2: So talk about the four different bills I've been talking
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  Speaker 2: about with the Stay Safe, Step Back, Help Copes Act,
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  Speaker 2: the Food Nutrition Therapy Act, I'm not mistaken, and the
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  Speaker 2: Relabilization is very interesting also. But the bills on d
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  Speaker 2: DNC's mind that you've been going through. Talk about each
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  Speaker 2: one of them for a few minutes to begin.
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  Speaker 4: So the D D and C identifies bills a couple
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  Speaker 4: of different ways. Of course, we're a grassroots organization. We
• 8:42
  Speaker 4: have many different organizations involved, so we rely on people
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  Speaker 4: to tell us things are happening. For example, with the
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  Speaker 4: Medical Nutrition Equity Act and the Medical Nutrition Therapy Act,
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  Speaker 4: that was a grassroots phenomenon. People were coming to the
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  Speaker 4: d D and C and saying, my doctor is telling
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  Speaker 4: me I need this product or I need you know,
• 8:59
  Speaker 4: some type of assistance with tube feeding and lo and behold,
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  Speaker 4: I'm being told to pay out a pocket or I'm
• 9:05
  Speaker 4: dealing with other issues. This seems wrong, and this is
• 9:07
  Speaker 4: physician directed medical care. You know, it might not be
• 9:10
  Speaker 4: a prescription, but it's very similar. And that's, you know,
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  Speaker 4: that's how we started working on those issues, and of
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  Speaker 4: course that's the same way way Congress ended up introducing
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  Speaker 4: bills like the Medical Nutrition Therapy Act or the Medical
• 9:22
  Speaker 4: Nutrition Equity Act. We look for legislation though, that preserves
• 9:27
  Speaker 4: the patient and doctor relationship. Are you and your doctor
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  Speaker 4: able to decide what care is best for you and
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  Speaker 4: what you should be doing without interference or steering or
• 9:36
  Speaker 4: anything else, And do you have access to all products
• 9:40
  Speaker 4: and all sites of care. People aren't restricting your choices
• 9:43
  Speaker 4: or saying I think you should try this or something else.
• 9:46
  Speaker 4: You and the doctor can decide what your care plan
• 9:48
  Speaker 4: should be. They're the only one who's an expert. And
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  Speaker 4: then it's bills that tend to be bipartisan. Of course,
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  Speaker 4: the issues that are polarizing make a lot of news,
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  Speaker 4: but the only things that get done are things where
• 10:00
  Speaker 4: everybody agrees it's a good idea, and they do, you know,
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  Speaker 4: work on this regularly, even though they seem polarized right now.
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  Speaker 4: They passed a couple of bills in what they call
• 10:08
  Speaker 4: suspension or unanimous consent, where everyone just says, I and
• 10:11
  Speaker 4: they vote on it because everyone agrees it's a good idea.
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  Speaker 4: The one of the bills we work on is the
• 10:18
  Speaker 4: Safe Step Act, which has to do a step therapy,
• 10:21
  Speaker 4: and it says, you know, if you are your doctor
• 10:24
  Speaker 4: says you need a certain product, and an insurance company says, well,
• 10:28
  Speaker 4: we're going to switch this to a different product, and
• 10:30
  Speaker 4: we think you should fail on that first before going
• 10:33
  Speaker 4: on to something else. You have a right to know
• 10:35
  Speaker 4: that that's happened, and your doctor also has potentially the
• 10:39
  Speaker 4: ability to override that and say no, I'm the medical expert.
• 10:42
  Speaker 4: This could be dangerous. We're using what I said. This
• 10:45
  Speaker 4: isn't a ban on the practice. It's just guardrails. It's
• 10:47
  Speaker 4: a compromise. But that bill had two hundred and fifty
• 10:50
  Speaker 4: co sponsors in the last Congress. The House only has
• 10:54
  Speaker 4: four hundred and thirty five members, so you know that's
• 10:56
  Speaker 4: majority support. When it gets reintroduced, it should be close
• 11:00
  Speaker 4: to passing. It has enough votes to pass another vote.
• 11:03
  Speaker 4: That's another bill that's very close to passing is the
• 11:06
  Speaker 4: Help Copays Act. This has to do with co payment
• 11:09
  Speaker 4: assistance and basically it says, if someone helps you with
• 11:13
  Speaker 4: a copay card or helps you. You know, with your
• 11:15
  Speaker 4: pharmacy payments, it has to be counted to your out
• 11:18
  Speaker 4: of pocket maximum, and ensure can't take that assistance and
• 11:21
  Speaker 4: then tell you, okay, now you also have to keep
• 11:24
  Speaker 4: giving me money until I reach the out of.
• 11:25
  Speaker 1: Pocket it's double dipping. That bill had one.
• 11:28
  Speaker 4: Hundred and fifty co sponsors last time, so it's newer,
• 11:32
  Speaker 4: but it's reaching that tipping point of support. It's clearly
• 11:35
  Speaker 4: a patient care issue. And that bill was just reintroduced
• 11:39
  Speaker 4: in the Senate recently, just a couple of days ago,
• 11:42
  Speaker 4: so right after we were on the hill, that bill
• 11:44
  Speaker 4: got reintroduced in the Senate. We're waiting to see it
• 11:46
  Speaker 4: be reintroduced in the House. And another bill that I
• 11:49
  Speaker 4: think is important is one called the Treat and Reduce
• 11:52
  Speaker 4: Obesity Act, which has to do with coverage for products
• 11:56
  Speaker 4: and services related to what they call anti obesity medications
• 11:59
  Speaker 4: or ones. You can have metabolic disorders, you can have
• 12:03
  Speaker 4: a variety of issues where this might matter. But this
• 12:06
  Speaker 4: is a good example, like with medical nutrition therapy, where
• 12:09
  Speaker 4: you know, science moves forward quickly sometimes, but the regulatory
• 12:14
  Speaker 4: framework that Congress works on sometimes moves in geologic time.
• 12:18
  Speaker 4: So if a Congress hasn't passed a law and says
• 12:21
  Speaker 4: this is how coverage will work for these products, or
• 12:24
  Speaker 4: this is how reimbursement's going to work for these services.
• 12:27
  Speaker 4: They might not be covered at all, so they need
• 12:29
  Speaker 4: to update that. And now we've reached new frontiers in medicine,
• 12:32
  Speaker 4: so making sure people have proper access and coverage through
• 12:35
  Speaker 4: federal programs like Medicare and Medicaid, that then helps with
• 12:38
  Speaker 4: private insurance matters a great deal. So that's a newer issue,
• 12:41
  Speaker 4: but one that's picking up steam to.
• 12:44
  Speaker 2: I mean, you talk about all these different things, and
• 12:48
  Speaker 2: firstly those that advocate it for all these is the
• 12:51
  Speaker 2: ten pretty big, like can people who are able bodiedet
• 12:54
  Speaker 2: have friends or family obviously caregivers, but beyond that, anybody
• 12:58
  Speaker 2: seems to be encouraged to register with I find very helpful, right, yes,
• 13:02
  Speaker 2: for these forms.
• 13:03
  Speaker 4: Yeah, you don't always have to be a patient, we say,
• 13:06
  Speaker 4: tell your story, but the fact that you chose to
• 13:07
  Speaker 4: be their matters. You could be a parent, you can
• 13:10
  Speaker 4: be a caregiver. I did a hill day once for
• 13:12
  Speaker 4: a rare disease where somebody showed up that was simply
• 13:15
  Speaker 4: the neighbor of a person who had the condition, and
• 13:18
  Speaker 4: they said, I know my neighbor, they're a good friend.
• 13:20
  Speaker 4: They're too sick to travel, but I wanted to come
• 13:23
  Speaker 4: and speak on their behalf. The same thing with the opposite.
• 13:26
  Speaker 4: The fact that you did that means a lot to them.
• 13:29
  Speaker 4: They know that you have a pure self interest. They
• 13:31
  Speaker 4: know that you can really tell folks how the healthcare
• 13:34
  Speaker 4: system is working.
• 13:35
  Speaker 1: And the fact that you.
• 13:35
  Speaker 4: Care matters a great deal. So you don't always have
• 13:38
  Speaker 4: to have a patient story. Sometimes it's a provider story,
• 13:42
  Speaker 4: sometimes it's a caregiver story, and sometimes it's just a
• 13:45
  Speaker 4: friend of the community.
• 13:46
  Speaker 1: But all those voices matter.
• 13:48
  Speaker 2: Dan, I gotta ask you this. You just mentioned geologic
• 13:51
  Speaker 2: time frames of Congress and whatnot. I find that some
• 13:54
  Speaker 2: of these bills are they even breathing, you know what
• 13:56
  Speaker 2: I mean? Or are they sort of need to be
• 13:57
  Speaker 2: resurrected right now.
• 13:59
  Speaker 1: Yeah.
• 13:59
  Speaker 4: So anytime, of course that you have a Congress that ends,
• 14:03
  Speaker 4: like the one hundred and eighteenth Congress, with Congress is
• 14:05
  Speaker 4: always in session for two years ended last December, bills
• 14:09
  Speaker 4: always have to be reintroduced. They start the process over,
• 14:11
  Speaker 4: they get a new bill number, but they don't ever
• 14:14
  Speaker 4: go back to zero. If you have a bill with
• 14:15
  Speaker 4: two hundred and fifty co sponsors. Most of those folks
• 14:18
  Speaker 4: are still in Congress. It's going to start ahead of
• 14:20
  Speaker 4: the curve. It builds year over year, and it reaches.
• 14:25
  Speaker 1: A tipping point.
• 14:26
  Speaker 4: And the best example I can give is there is
• 14:29
  Speaker 4: a bill years ago called the Genetic Information Non Discrimination Act,
• 14:32
  Speaker 4: which makes sense to us, but said, if you get
• 14:36
  Speaker 4: tested and you find out that you have a condition,
• 14:38
  Speaker 4: like you a proclivity for breast cancer, for example, your
• 14:42
  Speaker 4: employer can't fire you from your job, and an insurance
• 14:45
  Speaker 4: plan couldn't say we're not giving you a policy like
• 14:47
  Speaker 4: life insurance because you're more likely to get sick. They
• 14:50
  Speaker 4: wouldn't want to disincentivize you, knowing your status and being
• 14:53
  Speaker 4: able to protect yourself. It took about ten years to
• 14:56
  Speaker 4: pass that bill, but when it passed, it passed. I
• 15:00
  Speaker 4: think the House like four hundred and twenty to one.
• 15:03
  Speaker 4: Everybody voted for it. It's time had come. It carried
• 15:06
  Speaker 4: over you know the goal line excessively. We're getting close
• 15:09
  Speaker 4: with things like the Safe Step Act and Help Copays Act,
• 15:13
  Speaker 4: other bills like Medical Nutrition Therapy and Treat and Reduce
• 15:16
  Speaker 4: OBSTI will probably be there in time. As well as
• 15:19
  Speaker 4: that support grows. But the only reason a member becomes
• 15:22
  Speaker 4: a co sponsor of supporters because their constituents reached out
• 15:25
  Speaker 4: and said, this is why you should do this and
• 15:27
  Speaker 4: why it matters.
• 15:27
  Speaker 1: They do these judgements based on who they talk too. Locally.
• 15:30
  Speaker 2: I was going to say, I feel like we have
• 15:32
  Speaker 2: to continue the conversation, not just go down to watch
• 15:33
  Speaker 2: themon Then let's do a recap, Let's do an after
• 15:36
  Speaker 2: because then someone here in this can literally call their
• 15:38
  Speaker 2: congressman or woman and say, hey, I heard this show.
• 15:42
  Speaker 3: Can you get this bill? You know, back up and
• 15:44
  Speaker 3: running again?
• 15:44
  Speaker 2: Type of thing for you, Dan, though you've been doing
• 15:47
  Speaker 2: this for how many years by the.
• 15:48
  Speaker 4: Way, twenty years now in two thousand and four or so,
• 15:51
  Speaker 4: just just.
• 15:52
  Speaker 2: Over, have you noticed that this is that walk to
• 15:55
  Speaker 2: the Capitol must give you goosebumps every year, right?
• 15:58
  Speaker 3: I mean, it must be something special to do that one.
• 16:00
  Speaker 4: It's always different challenges and opportunities, and it's really but
• 16:05
  Speaker 4: the process remains the same. And an important thing is
• 16:08
  Speaker 4: that the things we talk about are nonpartisan and non controversial.
• 16:13
  Speaker 4: The opposition isn't another group. Nobody's coming to the hill
• 16:17
  Speaker 4: and saying don't fund medical research or don't do this.
• 16:20
  Speaker 4: For the most part, it's just members that are busy
• 16:23
  Speaker 4: and probably aren't familiar with these issues.
• 16:26
  Speaker 1: They need to be.
• 16:26
  Speaker 4: Educated, They need to know how it affects people back home.
• 16:30
  Speaker 4: The enemy, for lack of a better phrase, is a
• 16:33
  Speaker 4: lack of awareness. So people being here and spreading the
• 16:35
  Speaker 4: word matters a great deal. But yes, always it's always interesting,
• 16:41
  Speaker 4: it's always a new challenge. But then the heartening thing
• 16:44
  Speaker 4: is that the process always stays the same, which is
• 16:46
  Speaker 4: that members of Congress make these decisions based on relationships
• 16:50
  Speaker 4: they have with their constituents, and that's ultimately what moves
• 16:53
  Speaker 4: things forward. And you do see progress. You look at
• 16:55
  Speaker 4: a number of cancers where the five year survivability rate improves.
• 17:00
  Speaker 4: You look at a number of conditions where you know,
• 17:02
  Speaker 4: maybe it went from being having a high mortality rate
• 17:06
  Speaker 4: to being a manageable chronic disease. It's one foot in
• 17:09
  Speaker 4: front of the other, and over time it really makes
• 17:12
  Speaker 4: a difference. And when you go to something like a
• 17:15
  Speaker 4: patient conference or an annual meeting, you see a gap
• 17:20
  Speaker 4: between you know, generationally in terms of how care is improved,
• 17:24
  Speaker 4: and it's encouraging to know that it gets better and
• 17:26
  Speaker 4: better every year. But it's a result of community input
• 17:29
  Speaker 4: and everybody working.
• 17:30
  Speaker 2: Together being of that the wide age range that seemed
• 17:34
  Speaker 2: to be there this year must be there every year.
• 17:37
  Speaker 2: How awesome is that for you to see, Wow, every
• 17:39
  Speaker 2: generation is at this meeting. This is how important it is.
• 17:42
  Speaker 4: Absolutely, And of course it's folks from all over the country.
• 17:45
  Speaker 4: You know, we have probably thirty states represented, west coast,
• 17:49
  Speaker 4: east coast, north south, and then it's different walks of life,
• 17:53
  Speaker 4: different perspectives, but everyone's there for the same reason.
• 17:56
  Speaker 1: Everybody wants to make.
• 17:57
  Speaker 4: A difference and that's what matters, and it continues to
• 18:00
  Speaker 4: matter on Capitol Hill.
• 18:01
  Speaker 3: All right.
• 18:01
  Speaker 2: So we had this round of bills right that we
• 18:03
  Speaker 2: were promoting and advocating for. Do the bills change as
• 18:06
  Speaker 2: the forums go a year up to year, Like, are
• 18:08
  Speaker 2: the different bills you're looking into to say, hey, let's
• 18:11
  Speaker 2: get this back on the docket.
• 18:12
  Speaker 4: Yes, And usually it's because something gets done and we
• 18:16
  Speaker 4: move on to something else. And I'll just give an example.
• 18:19
  Speaker 4: You know, there have been issues with prior authorization. That's
• 18:23
  Speaker 4: you know, bills are very popular. I think had three
• 18:25
  Speaker 4: hundred and fifty co sponsors, so that's almost going to pass.
• 18:28
  Speaker 4: Folks might remember we had something called the Four Pillars
• 18:31
  Speaker 4: of Patient Protection years ago, which said children should be
• 18:35
  Speaker 4: able to stay on family coverage till they're twenty six.
• 18:37
  Speaker 4: Insurance company can't deny you a policy because you have
• 18:41
  Speaker 4: a pre existing condition. These are things we all know
• 18:43
  Speaker 4: and understand now, but you know, fifteen years ago they
• 18:46
  Speaker 4: weren't the case. So you get things done and you
• 18:48
  Speaker 4: move on to the next things. Once you know, we
• 18:51
  Speaker 4: deal with stuff like safe Step and help copays, there
• 18:54
  Speaker 4: will be new challenges. There's an emerging challenge right now,
• 18:57
  Speaker 4: this newer just a couple of years old, called alternative
• 18:59
  Speaker 4: fun programs, where if somebody you know has a policy,
• 19:04
  Speaker 4: they maybe have their specialty drug coverage excluded, and then
• 19:07
  Speaker 4: someone tries to find them an alternative outside of like
• 19:10
  Speaker 4: insurance to get access to that product, maybe a short donations,
• 19:14
  Speaker 4: a short term solution. But this isn't the way it's
• 19:16
  Speaker 4: meant to work. So the situation evolves as progress is made,
• 19:21
  Speaker 4: and then of course the community needs to move forward
• 19:23
  Speaker 4: as well. But it's important to remember that, you know,
• 19:27
  Speaker 4: recently we ended surprise medical billing. We have the four
• 19:31
  Speaker 4: Pillars now, so there are issues that we were working
• 19:33
  Speaker 4: on that are done and now settled law, and we
• 19:36
  Speaker 4: move on to the next thing. But it's always you know,
• 19:38
  Speaker 4: that march one foot in front of the other.
• 19:41
  Speaker 2: You know, we had a very very i would say
• 19:43
  Speaker 2: docile group that didn't really scream in the faces. But
• 19:46
  Speaker 2: have you had those experience where like advocates go there
• 19:49
  Speaker 2: and start yelling at the at the stabblished face.
• 19:51
  Speaker 3: I find that disrespectful. But I've ran into that ever, not.
• 19:55
  Speaker 4: Usually, And the reason is I think sometimes people when
• 19:57
  Speaker 4: they first get to DC, they can fuse the offices,
• 20:01
  Speaker 4: which are policy staff with the campaigns and the people
• 20:04
  Speaker 4: that are campaigning. It's a different thing when they're on
• 20:07
  Speaker 4: TV and they're trying to get elected. You know, you
• 20:09
  Speaker 4: can say whatever you want. We have free speech in
• 20:11
  Speaker 4: this country. When you are elected and you're in a
• 20:15
  Speaker 4: policy office, you're there to make good law for your constituents.
• 20:18
  Speaker 4: So they're often they roll out the red carpet. They're
• 20:21
  Speaker 4: very accommodating. Political issues rarely come up. And then even
• 20:26
  Speaker 4: if you have a preconceived notion about somebody's politics, after
• 20:30
  Speaker 4: you meet with them, folks usually leave and say that
• 20:32
  Speaker 4: was really nice, and that staffer was really nice, and
• 20:35
  Speaker 4: they usually.
• 20:36
  Speaker 3: It does give me some kind of hope that you know,
• 20:38
  Speaker 3: government is working for us. Doesn't it give you that
• 20:39
  Speaker 3: hope every year?
• 20:41
  Speaker 1: Oh?
• 20:41
  Speaker 4: Absolutely, And it helps a lot if you do actually
• 20:43
  Speaker 4: contact those offices, you make connections with them, You talk
• 20:47
  Speaker 4: about the things that matter to you, You make a
• 20:49
  Speaker 4: clear of an expectation that they're going to work on
• 20:51
  Speaker 4: your behalf. You find that they're often trying to be
• 20:54
  Speaker 4: very accommodating.
• 20:55
  Speaker 2: The follow up seems to be very important because you
• 20:57
  Speaker 2: don't want them to lose sight of those bills that
• 20:59
  Speaker 2: we've been talking about the last couple of weeks.
• 21:01
  Speaker 3: For sure.
• 21:02
  Speaker 2: You know, Dana, I have to say this because I
• 21:05
  Speaker 2: look at all from the newsworthy perspective, and it's true.
• 21:08
  Speaker 2: We're these type of things are up against big pharmas.
• 21:11
  Speaker 2: So how do you combat that kind of uh? You
• 21:14
  Speaker 2: know that seems to be a challenge as.
• 21:16
  Speaker 4: Well, Yeah, big pharma, big insurance. The fact of the matter, though,
• 21:20
  Speaker 4: is even though you have large entities, the members are
• 21:25
  Speaker 4: ultimately and they can go in and talk about whatever
• 21:27
  Speaker 4: they want to. The members themselves are listening to their
• 21:31
  Speaker 4: patient constituents. Because someone can say, oh, the healthcare system's
• 21:34
  Speaker 4: working great, or oh this, things have never been better.
• 21:38
  Speaker 4: But the only way they can make that assessment is
• 21:40
  Speaker 4: is it working well for you? What was your time
• 21:42
  Speaker 4: to diagnosis? Did you have enough treatments available after you
• 21:45
  Speaker 4: were diagnosed where you told you had to go somewhere
• 21:48
  Speaker 4: far away for specialized care? Did you need something and
• 21:52
  Speaker 4: then you found out you had to pay out a
• 21:54
  Speaker 4: pocket for it. When you give them these personal stories,
• 21:58
  Speaker 4: it helps them plug those gaps. They can identify the
• 22:00
  Speaker 4: challenges and opportunities, and they can make sure that they're
• 22:04
  Speaker 4: passing laws or new policies that work for you. Because
• 22:07
  Speaker 4: everyone's going to say they're doing the right thing and
• 22:09
  Speaker 4: that the system is working, but they can't make that
• 22:11
  Speaker 4: judgment call unless they know how it's working for you
• 22:14
  Speaker 4: in their district that has a specific issue and needs
• 22:18
  Speaker 4: a specific set of services.
• 22:20
  Speaker 2: Any patient story that actually made you tear up over
• 22:23
  Speaker 2: the last twenty years, you've been doing.
• 22:24
  Speaker 4: This absolutely and this I won't say names, but it
• 22:27
  Speaker 4: has to do with a personal friend that passed away.
• 22:31
  Speaker 4: They were a very bold cancer advocate and you end
• 22:36
  Speaker 4: up being diagnosed with pretty aggressive cancer themselves. We tried
• 22:40
  Speaker 4: to do everything we could. I think you know when
• 22:42
  Speaker 4: you have a diagnosis like that, you have to work
• 22:45
  Speaker 4: particularly quick, and there was a lot of progress made
• 22:48
  Speaker 4: in a short amount of time. It didn't save that
• 22:51
  Speaker 4: person's life, but it did help save other lives moving forward,
• 22:56
  Speaker 4: and that's you know, heartening in and of itself too.
• 23:00
  Speaker 2: You know, it's funny as an advocate, I often think
• 23:03
  Speaker 2: of others, right because I want to go there to
• 23:05
  Speaker 2: help others live as long as I've been able to live.
• 23:08
  Speaker 2: But you know, I guess we all go in there saying, well,
• 23:10
  Speaker 2: if it can have benefit us also, that's a win win.
• 23:13
  Speaker 2: But I love that we all go down there to
• 23:15
  Speaker 2: help others, not just ourselves in.
• 23:17
  Speaker 3: That regard, you know, absolutely, Dane.
• 23:20
  Speaker 2: I was going to ask you if you had a
• 23:22
  Speaker 2: personal story to this, because obviously you're in this for
• 23:24
  Speaker 2: a reason. You're in this fight every year for a reason,
• 23:27
  Speaker 2: and that might be one of them. But what was
• 23:29
  Speaker 2: alongside your Congress report?
• 23:31
  Speaker 3: What else drug? Did you have family?
• 23:33
  Speaker 2: Did you have friends that were in this non even
• 23:35
  Speaker 2: digestive disease but disabled or something like that.
• 23:38
  Speaker 4: I think you bring up a good point, which is
• 23:40
  Speaker 4: I didn't go to I didn't end up working in biotech,
• 23:42
  Speaker 4: so that wasn't the draw For me. The draw was
• 23:44
  Speaker 4: improving people's lives and being able to help folks, kind
• 23:47
  Speaker 4: of that service oriented goal I've always that's always aligned
• 23:51
  Speaker 4: with where I've been personally, and that's why I didn't
• 23:53
  Speaker 4: take you know, other jobs on the hill or things
• 23:55
  Speaker 4: like that, because this is what I've been wanting to
• 23:57
  Speaker 4: do what's interesting to me. I won't get into specifics,
• 24:00
  Speaker 4: but I do have family members that have been affected
• 24:03
  Speaker 4: by all of these things. There's a bill right now
• 24:05
  Speaker 4: called Supplemental Oxygen Access for Form Act that has to
• 24:08
  Speaker 4: do with you know, DM and medical equipment and people
• 24:11
  Speaker 4: who have conditions that are lung related not being able
• 24:14
  Speaker 4: to get the oxygen they need it. Affected members of
• 24:17
  Speaker 4: my family, you know, the Help Copays Act, the Safe
• 24:20
  Speaker 4: Step Act. Every chronic diseases in this country are quite common.
• 24:25
  Speaker 4: Everybody has a family member who's affected by something.
• 24:28
  Speaker 2: Yeah, where seventy percent of Americans are even more have
• 24:31
  Speaker 2: at least two, which I find may mind boggling, but
• 24:34
  Speaker 2: there we are.
• 24:35
  Speaker 4: And that's when you see, you, you know, their stories
• 24:38
  Speaker 4: from Thanksgiving or just getting together, and then you see
• 24:41
  Speaker 4: the legislation coming through too that's meant to tackle the
• 24:45
  Speaker 4: exact issue you know.
• 24:46
  Speaker 2: I got a chance to be in the House gallery
• 24:48
  Speaker 2: when they introduced the resolution to honor those killed in
• 24:51
  Speaker 2: the plane crash about the Potomac, and I'm just.
• 24:54
  Speaker 3: To myself, we can be there too.
• 24:55
  Speaker 2: Our resolutions can get on the floor as well, not
• 24:58
  Speaker 2: just the news newsy things, but really on the ground, grassroots.
• 25:02
  Speaker 2: And this is the other I want to ask, because
• 25:03
  Speaker 2: someone said, well, you know, you were just lobbying. It
• 25:05
  Speaker 2: didn't feel like lobbying though, you know, I mean, it
• 25:07
  Speaker 2: felt like a real genuine conversation. So if you want
• 25:10
  Speaker 2: to do that instead of lobby lobby, I su just
• 25:13
  Speaker 2: joined d DNC because you guys do it right.
• 25:16
  Speaker 4: Absolutely, and it's not lobbying, quote unquote every American. This
• 25:21
  Speaker 4: is a constitutionally protected right. Your right to go to
• 25:25
  Speaker 4: your members of Congress and tell them what they need
• 25:27
  Speaker 4: to do for you is constitutionally protected. Not everyone knows that,
• 25:31
  Speaker 4: and not everyone takes advantage of it. Lobbying is thought
• 25:34
  Speaker 4: of as some kind of you know, fee for service,
• 25:37
  Speaker 4: or you're there for something, but anybody can make their
• 25:40
  Speaker 4: voice heard for a cause that they care about, and
• 25:43
  Speaker 4: that's more powerful than anything else. The fact that you've
• 25:46
  Speaker 4: chosen to do this that you volunteered to do it.
• 25:48
  Speaker 4: That is so much more compelling to the members, and
• 25:51
  Speaker 4: those personal stories that's why they just matter that much more.
• 25:54
  Speaker 4: But I wouldn't call it lobbying. It's definitely advocacy. But
• 25:57
  Speaker 4: it's an advocacy as we do it, and as the
• 26:00
  Speaker 4: d D and C foot patients and their family do
• 26:03
  Speaker 4: it is a constitutionally protected right and one that everybody
• 26:06
  Speaker 4: should take advantage of and.
• 26:08
  Speaker 2: The best route to do it. I mean, we're just
• 26:09
  Speaker 2: literally having an open, frank conversation. That's what it comes
• 26:12
  Speaker 2: down to, you know, Dane, I did like that the
• 26:15
  Speaker 2: registration was free. How does d DNC able to do that?
• 26:20
  Speaker 2: With all the costs that probably go into these events?
• 26:22
  Speaker 2: How do you make registration free for people?
• 26:24
  Speaker 4: There's a combination of things. One is, of course, all
• 26:28
  Speaker 4: of the member organizations chip in so that the d
• 26:31
  Speaker 4: D and C can be a thriving organization.
• 26:33
  Speaker 3: Fifty two if I'm not mistaken, Yeah, a lot dozens.
• 26:36
  Speaker 4: Yeah, and this is every corectal cancer, Crohn's disease, liver disease.
• 26:42
  Speaker 4: There was a time years ago when everybody came together
• 26:45
  Speaker 4: and said, we need a coalition for digestive diseases, and
• 26:47
  Speaker 4: the impetus for that back in the late seventies early
• 26:50
  Speaker 4: eighties was that there was almost no research being done.
• 26:54
  Speaker 4: They started something called the National Commission on Digestive Diseases.
• 26:57
  Speaker 4: Together that research became tens became hundreds of millions of
• 27:02
  Speaker 4: dollars in research year over year, led to treatments, led
• 27:05
  Speaker 4: to FDA issues, which then led to coverage and access
• 27:08
  Speaker 4: and out of pocket cost issues. And everyone has kept
• 27:11
  Speaker 4: has kept working together since then. But everybody chips in
• 27:14
  Speaker 4: a little bit to make sure it can happen. And
• 27:17
  Speaker 4: then a lot of folks, you know, the registration is
• 27:20
  Speaker 4: always open. Anybody can volunteer to be there. Anyone can say,
• 27:24
  Speaker 4: I'm going to make the commitment to go to DC.
• 27:26
  Speaker 4: This matters to me and many folks do. So if
• 27:29
  Speaker 4: you want to get added to the list, serve. If
• 27:31
  Speaker 4: you want to get involved with a group that participates,
• 27:34
  Speaker 4: like the Celiac Disease Foundation, awesome association, the Association, you
• 27:38
  Speaker 4: can do that too, So but please get involved and participate.
• 27:43
  Speaker 2: You know, Dan, I gotta say, as someone disabilities who's
• 27:46
  Speaker 2: able to move around and rollblade and all that fun stuff,
• 27:49
  Speaker 2: I learned a lot about what others were going through too,
• 27:52
  Speaker 2: Like I didn't know there were one million people with ostomes.
• 27:55
  Speaker 2: Do you find that people come back to you and say, Wow,
• 27:58
  Speaker 2: I might have these things, but I didn't realize how
• 28:01
  Speaker 2: widespread it is.
• 28:02
  Speaker 3: It makes you feel less alone, that's for sure.
• 28:04
  Speaker 4: Absolutely, there is a sense of kinship and that comes
• 28:06
  Speaker 4: from working through the national patient organizations too. And then
• 28:10
  Speaker 4: usually you know, there's a lot of myths and misperceptions
• 28:13
  Speaker 4: out there. I think people deal with it every day.
• 28:15
  Speaker 4: If you talk to people at the grocery store or
• 28:17
  Speaker 4: others you meet in different environments, think of congressional staff
• 28:21
  Speaker 4: the same way. They might have those same myths and misperceptions.
• 28:23
  Speaker 4: They're just regular folks too, They're not necessarily policy wonks
• 28:27
  Speaker 4: or experts. And you giving them that info this is
• 28:30
  Speaker 4: what's going on with my condition. Those that basic data,
• 28:33
  Speaker 4: this is how many Americans are affected. It might be
• 28:35
  Speaker 4: very illuminating to them. But if you don't deliver that information,
• 28:39
  Speaker 4: who's going to do it?
• 28:40
  Speaker 2: Absolutely? And Dane, how about the fall? Because I know
• 28:43
  Speaker 2: you guys do this twice a year. What's the fall?
• 28:45
  Speaker 2: Because obviously you did this right before budgets are budget
• 28:49
  Speaker 2: talks and all that what's the Fall Forum like.
• 28:51
  Speaker 4: Yeah, the Fall Forum is more of a chance to
• 28:53
  Speaker 4: hear a couple of things. We do this event near
• 28:56
  Speaker 4: Capitol Hill. Again, the Fall Forum will include members of
• 29:01
  Speaker 4: Congress working on these issues, and then a number of
• 29:04
  Speaker 4: policy staff that are experts as well, and they'll give
• 29:07
  Speaker 4: everybody updates. So you started advocating in March, you know,
• 29:11
  Speaker 4: on the budget, on spending or on some of these
• 29:14
  Speaker 4: policy items, this is where we're at now, and this
• 29:16
  Speaker 4: is where we're going next. And that's a timely update
• 29:19
  Speaker 4: after the August recess for what's going to happen moving
• 29:22
  Speaker 4: into the end of the year. So it's a nice
• 29:23
  Speaker 4: way to bookend and update and know where we can
• 29:26
  Speaker 4: be effective advocates as December rolls around and they might
• 29:29
  Speaker 4: be finishing the spending bills or anything else.
• 29:31
  Speaker 2: As a DC Rep, I feel like your job never ends, right,
• 29:33
  Speaker 2: It's always ongoing and always looking for that new bill
• 29:38
  Speaker 2: to look for and of course keep it up eye
• 29:40
  Speaker 2: on what's going on in the bills already up for debate.
• 29:43
  Speaker 4: And what absolutely and appropriations these are must pass bills.
• 29:47
  Speaker 4: I think people know what they're talking about right now
• 29:49
  Speaker 4: is that they can't find an agreement on the fourteenth,
• 29:50
  Speaker 4: we're going to have a government shutdown. The government stops working,
• 29:53
  Speaker 4: so they have to do this, but they have to
• 29:55
  Speaker 4: do it every year, so there's always a need. They
• 29:57
  Speaker 4: always rewrite these bills. And one is sample. You know,
• 30:00
  Speaker 4: the Department of Defense has something called the Peer Reviewed
• 30:03
  Speaker 4: Medical Research Program that conditions on that list are deemed
• 30:07
  Speaker 4: eligible for study. The only way for conditions to end
• 30:10
  Speaker 4: up on that list is people ask their senators to
• 30:12
  Speaker 4: include them, and when their senators write the bill, they
• 30:14
  Speaker 4: put him in there. There's usually a military service connection,
• 30:17
  Speaker 4: but they know that people are affected. So it's a
• 30:19
  Speaker 4: really good example of democracy and action. But your senator
• 30:22
  Speaker 4: might not might have lost reelection or retired, so now
• 30:26
  Speaker 4: a new person's going to.
• 30:27
  Speaker 1: Write that bill.
• 30:28
  Speaker 4: You need to be engaged and participating year in and
• 30:31
  Speaker 4: year out. We have to do it, but we encourage
• 30:33
  Speaker 4: advocates to make that commitment as well.
• 30:35
  Speaker 2: One hundred percent, Dan, I gotta ask you a couple
• 30:38
  Speaker 2: more things, if you don't mind. Firstly, you mentioned the
• 30:42
  Speaker 2: turnover any big senators in the last twenty years that
• 30:46
  Speaker 2: really have said, you know, I'm going to meet with
• 30:48
  Speaker 2: these folks, not just with the staffers.
• 30:49
  Speaker 3: Well I'm going to be here. Yeah.
• 30:51
  Speaker 4: Absolutely, And there's a couple you know, people will remember some.
• 30:55
  Speaker 4: I'll just use some names that folks might be familiar with.
• 30:58
  Speaker 4: Joe Lieberman yea, he met with the d DNC and
• 31:01
  Speaker 4: got an award and spend a lot of time with everybody.
• 31:04
  Speaker 1: So Buddy Carter from Georgia.
• 31:07
  Speaker 4: Who leads the Help Copes that came to the Fall
• 31:09
  Speaker 4: Forum last year and spent a long time talking with everyone,
• 31:13
  Speaker 4: as did Jim McGovern who is the leader on a
• 31:15
  Speaker 4: lot of these medical nutrition and food issues.
• 31:18
  Speaker 1: So they do they do.
• 31:20
  Speaker 4: Make when it depends on when we're there and when
• 31:23
  Speaker 4: their schedules line up. But they love to have a
• 31:25
  Speaker 4: chance to chat with you and give you updates when
• 31:28
  Speaker 4: they can.
• 31:29
  Speaker 2: And then for those who may not feel like they
• 31:31
  Speaker 2: have a voice or no one's gonna listen to me,
• 31:33
  Speaker 2: and you know will always man to have disability, but
• 31:36
  Speaker 2: no one's gonna listen to me. What's your message of
• 31:38
  Speaker 2: those folks not just going to the forum, but do
• 31:40
  Speaker 2: you feel like Moore should get involved in their different diseases.
• 31:44
  Speaker 2: I mean it seems like there's more obviously other than
• 31:47
  Speaker 2: people realize.
• 31:48
  Speaker 4: Yeah, I would say choose your own level of involvement.
• 31:51
  Speaker 4: If you're more comfortable, you know, sending an email or
• 31:54
  Speaker 4: responding to us, so what it's called an action alert.
• 31:57
  Speaker 1: Start there.
• 31:57
  Speaker 4: You don't have to be making virtual visits or travel
• 32:00
  Speaker 4: to Washington, d C. But your voice really matters. And
• 32:03
  Speaker 4: the one thing I'll say is there's always a risk
• 32:06
  Speaker 4: to not being involved too. We say the squeaky wheel
• 32:09
  Speaker 4: gets the grease, but we also say you can be
• 32:11
  Speaker 4: at the table or you can be on the menu,
• 32:13
  Speaker 4: which is there's a downside to having no advocacy for
• 32:16
  Speaker 4: a community as well, which is usually a relatively stagnant
• 32:20
  Speaker 4: research apparatus, limited treatment development, and no real attention to
• 32:25
  Speaker 4: specific coverage and access issues affecting the community.
• 32:27
  Speaker 1: If you're not doing it, who's going to.
• 32:29
  Speaker 2: Well do you find the rural community really comes to
• 32:31
  Speaker 2: these things and avagances because obviously the rural communities have
• 32:34
  Speaker 2: a little less of an advantage.
• 32:36
  Speaker 4: In the urban areas, right, Yeah, But recently that's become
• 32:40
  Speaker 4: more pronounced and there's a lot of patient organizations that
• 32:42
  Speaker 4: have been trying to do things like instead of having
• 32:45
  Speaker 4: an annual meeting in Philadelphia, have one in Indianapolis, where
• 32:48
  Speaker 4: more where you're reaching new environments and new folks. But
• 32:51
  Speaker 4: we've seen, you know, there's been a lot of talk
• 32:54
  Speaker 4: about rural care and some of the unique challenges of
• 32:56
  Speaker 4: not being close to a large academic health center. And
• 32:59
  Speaker 4: the reason why Congress is now interested in this is
• 33:02
  Speaker 4: because they're hearing from more and more constituents that are
• 33:05
  Speaker 4: saying these are their problems. They don't want to have
• 33:07
  Speaker 4: to travel an hour or two hours to see somebody
• 33:09
  Speaker 4: who they need to see regularly.
• 33:12
  Speaker 3: One hundred Well, Dane, this has been really eye opening.
• 33:15
  Speaker 2: And I know you mentioned the Congressional website or people
• 33:18
  Speaker 2: who can get but is there a way we can
• 33:19
  Speaker 2: get alert on all these bills that we've been talking about, like, oh,
• 33:22
  Speaker 2: let me get an email about how this bill is progressing.
• 33:24
  Speaker 4: Yeah, there's a couple of websites. One is congress dot org,
• 33:29
  Speaker 4: where you can look up bills. Another one's called GovTrack
• 33:31
  Speaker 4: dot us, which some of these are pro bono services.
• 33:36
  Speaker 4: Congress is a service of the Library of Congress, which actually,
• 33:39
  Speaker 4: you know is the government repository. And then many of
• 33:42
  Speaker 4: these these organizations. So if the Crones and Colitis Foundation
• 33:45
  Speaker 4: is active on the help Cope's bill, they might send
• 33:48
  Speaker 4: out dedicated updates and even information saying now is the
• 33:51
  Speaker 4: time you know to take action.
• 33:52
  Speaker 1: The d D and C will do this as well.
• 33:54
  Speaker 1: We have a list serve we.
• 33:55
  Speaker 4: Can add people's names to it if they want updates.
• 33:58
  Speaker 4: But we also encourage you to work with any patient
• 34:01
  Speaker 4: organization that might closely align with your interests.
• 34:04
  Speaker 2: You know, I've been looking for to ddnc's social media.
• 34:07
  Speaker 2: Are you guys on social media at all?
• 34:09
  Speaker 3: I don't see you guys.
• 34:10
  Speaker 4: We're making we're going to be more on social media
• 34:12
  Speaker 4: moving forward. This has been a commitment of some folks,
• 34:14
  Speaker 4: including the United Ostomey Associations of America leadership, that we
• 34:18
  Speaker 4: start to enter a little bit more of the twenty
• 34:20
  Speaker 4: first century. So we always look for support and assistance there,
• 34:24
  Speaker 4: but we're planning to be a little have a little
• 34:25
  Speaker 4: bit more of a social media presence moving forward to
• 34:27
  Speaker 4: reach a broader community and a younger community.
• 34:30
  Speaker 3: Thirty five forums, that's pretty longevity. How does that?
• 34:34
  Speaker 2: How you guys been able to keep it going for
• 34:35
  Speaker 2: thirty five years? And how did the DNC get started?
• 34:38
  Speaker 2: If you don't mind, Yeah.
• 34:39
  Speaker 4: So the DNC was originally a few different organizations coming together.
• 34:44
  Speaker 4: They rallied around this idea of doing research and forming
• 34:47
  Speaker 4: this National Commission on Digestive Diseases from that core group,
• 34:51
  Speaker 4: though it grew, you know, from I think it was
• 34:53
  Speaker 4: three initially, as you mentioned, now it's fifty so and
• 34:57
  Speaker 4: the nice thing is, of course, after thirty five years,
• 34:59
  Speaker 4: you have a lot of folks who've retired and passed
• 35:02
  Speaker 4: the torch. So there's been this need. Everyone has bought
• 35:05
  Speaker 4: into the cause though, and the importance of why we're
• 35:08
  Speaker 4: here and what we're doing, and it's made it easy
• 35:10
  Speaker 4: to go from generation to generation and from meeting to
• 35:13
  Speaker 4: meeting with limited disruption because everyone understands why we need
• 35:16
  Speaker 4: to do more for the digestive disease community. What we're
• 35:19
  Speaker 4: doing might change year to year, but the fact that
• 35:21
  Speaker 4: the need is there will always remains. And hopefully one
• 35:24
  Speaker 4: day you reach cures, you reach improvements, and it might
• 35:27
  Speaker 4: not be necessary, but that day is not today, unfortunately.
• 35:30
  Speaker 2: Well in your research, I don't know if you've ever
• 35:33
  Speaker 2: come across the named doctor Henry Viscardi, but he was
• 35:36
  Speaker 2: basically a champion of the ADA.
• 35:38
  Speaker 3: He helped make many trips to Washington.
• 35:41
  Speaker 2: So I felt that spirit because I graduated from his
• 35:43
  Speaker 2: high school, and I graduate and I got to know
• 35:45
  Speaker 2: him as a kid, so I felt like I was
• 35:48
  Speaker 2: channeling Doctor V's advocacy, and so thank you for allowing
• 35:51
  Speaker 2: me to continue his legacy through your guys work as well.
• 35:55
  Speaker 1: Thank you, and thank you for attending this year.
• 35:58
  Speaker 2: And we'll be back down there for sure. I've got
• 35:59
  Speaker 2: a feel and this isn't a one time thing, you know, so.
• 36:01
  Speaker 3: I'd love to come back.
• 36:02
  Speaker 1: Excellent, all right.
• 36:04
  Speaker 2: That was Dane Christiansen of the d DNC Washington Bureau,
• 36:08
  Speaker 2: if you will, Thanks for joining me, Dane on the
• 36:10
  Speaker 2: one Like GOP Network.
• 36:11
  Speaker 1: Thank you.