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OneLegUpAlex Recaps The DDNC Public Policy Forum 2025 : Ease Frustration Through Legislation · OneLegUpAlex Media

• 0:01
  Speaker 1: Here's your host, Alex Darren Well. I was on the hill.
• 0:07
  Speaker 1: If you didn't follow already at Alex g NYC one
• 0:10
  Speaker 1: or one leg Up. Alex. I've been on the hill
• 0:13
  Speaker 1: the last couple of days advocating for those with digestive diseases,
• 0:18
  Speaker 1: and I'm so excited and proud of the efforts of
• 0:22
  Speaker 1: the d DNC Digestive Disease National Coalition. Thank you Alejandra,
• 0:27
  Speaker 1: thank you Dane, thank you Josh. Fine, but really welcoming
• 0:32
  Speaker 1: all of us to advocate and to be honest adgacy
• 0:36
  Speaker 1: and lobbying. That wasn't my space, but now, I mean,
• 0:42
  Speaker 1: I've paid over twelve hundred dollars for an endoscopy, I
• 0:46
  Speaker 1: still get my medical supplies out of pocket. And I
• 0:50
  Speaker 1: was really informed by the last couple of days meeting
• 0:55
  Speaker 1: with different staffers of Senator Schumer's office, in Corey Booker's
• 0:59
  Speaker 1: office and jeff Van and Drew Reped Jeffer and Drew's office,
• 1:02
  Speaker 1: as well as our own congresswoman in Queen's Grace Mang's office.
• 1:07
  Speaker 1: All of these sessions and advocating for the different bills
• 1:12
  Speaker 1: has fired me up to say, yes, I want to
• 1:14
  Speaker 1: see these bills on the floor of the Congress, reintroduced
• 1:18
  Speaker 1: or introduced and sponsored. Because, as I've said over and
• 1:25
  Speaker 1: over and over and over again, people with disabilities, people
• 1:31
  Speaker 1: who are athletes, people who are movie stars, politicians, everyday people.
• 1:37
  Speaker 1: What do we all have in common. We're all tax payers.
• 1:43
  Speaker 1: So it's no wonder why groups go down to DC
• 1:46
  Speaker 1: every year. In fact, d DNC does it every spring
• 1:49
  Speaker 1: and fall, by the way, to say, hey, can you
• 1:52
  Speaker 1: get this pass for us? We need this past to
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  Speaker 1: protect those with disabilities, because that is what they're supposed
• 2:00
  Speaker 1: to do. That is their job, that is what we're
• 2:02
  Speaker 1: paying them to do, is pass laws that help the
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  Speaker 1: American people. So I want to give a shout out
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  Speaker 1: to Ashley and Schuyler and Bryce and Ben sorry Dan
• 2:19
  Speaker 1: Morgan who was advocating for more research into pancreatitis. And
• 2:25
  Speaker 1: I'll tell you what, tell you what, and of course
• 2:27
  Speaker 1: our team leader, Janine Glieber, who is the UOAA United
• 2:31
  Speaker 1: Owsome Association of America advocacy manager. You'll hear from her
• 2:36
  Speaker 1: in a little bit here, But i'll tell you what.
• 2:39
  Speaker 1: All this research and I've often referred to government shutdown
• 2:43
  Speaker 1: stop gap spending bills as kicking the can down the road. Boy,
• 2:46
  Speaker 1: oh boy, was my eye opened yesterday because when they
• 2:50
  Speaker 1: signed these bills into law, even the stop gaps to
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  Speaker 1: avert the government shutdown. Oh my god. They keep resources
• 3:04
  Speaker 1: alive for people with disabilities. And so I don't always
• 3:10
  Speaker 1: box myself into this one community because I believe disabled
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  Speaker 1: community should also look broader and bigger and how we
• 3:18
  Speaker 1: can all be benefiting as Americans because disabled people are
• 3:24
  Speaker 1: Americans just like everybody else. They just need a little
• 3:27
  Speaker 1: more help. But but what I found out this weekend
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  Speaker 1: was that there are things that can be passed and
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  Speaker 1: championed that you may not have ever heard before. I
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  Speaker 1: certainly did not until this weekend down in DC. I'm
• 3:47
  Speaker 1: so glad my mom and I were there to tell
• 3:49
  Speaker 1: our stories of what it was like the last thirty
• 3:51
  Speaker 1: three years having an ostomy, having digestive issue. And because
• 4:02
  Speaker 1: I'm here thirty three years later, I want to make
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  Speaker 1: sure doctors and patience have that relationship without insurance interference.
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  Speaker 1: I want to make sure patients can get the best
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  Speaker 1: their care they can get, just so they can thrive
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  Speaker 1: and live and live a long life like I've been
• 4:22
  Speaker 1: able to do thanks to the great work of the
• 4:24
  Speaker 1: doctors who just did what they had to and didn't
• 4:27
  Speaker 1: worry about what insurance was going to cover what. And
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  Speaker 1: I also believe in that same vein the doctors should
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  Speaker 1: be able to do their work without the insurance interference.
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  Speaker 1: Now as I mean a CEO should be shot dead
• 4:46
  Speaker 1: in the middle of Manhattan, absolutely not. We do things
• 4:50
  Speaker 1: through legislation. We even do things through justices. To remember,
• 4:54
  Speaker 1: before that shooting happened, the guy was about to be
• 4:57
  Speaker 1: brought down by the DOJ. He should just let that happen, Luigi.
• 5:03
  Speaker 1: But here's another way we can voice our frustration through
• 5:07
  Speaker 1: pushing legislation. Not killing anybody, but pushing legislation is the
• 5:13
  Speaker 1: best way to voice our frustration. So here are the
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  Speaker 1: four bills I want you to know about if you
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  Speaker 1: don't already. There are four main bills, the DDNC in
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  Speaker 1: alliance with the UAA and the Olay Foundation and a
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  Speaker 1: couple of other organizations. There's fifty two organizations that collaborated
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  Speaker 1: to make this coalition, by the way, But the four
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  Speaker 1: acts I want you to keep an eye on and
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  Speaker 1: tell your congress people about on the national level is
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  Speaker 1: the Safe Step Act to Help Copays, Act to Treat
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  Speaker 1: and Reduce Obesity Act, the Food Labeling Modernization Act, let
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  Speaker 1: me tell you about that. So there's a moment called
• 6:02
  Speaker 1: Make America Healthy Again, led by RFK Junior, who is
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  Speaker 1: now our JJI secretary. There were three times in this
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  Speaker 1: forum that the AJHS of today, the Trump AJHS, was
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  Speaker 1: praised for this food labeling modernization, for getting rid of
• 6:17
  Speaker 1: the red dye. Three, there was actually praise for the
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  Speaker 1: way they can help out those with livered issues and
• 6:25
  Speaker 1: kidney issues. I mean, this is sort of a coalition
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  Speaker 1: that probably is certainly nonpartisan. They met with both sides,
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  Speaker 1: but probably wants the Republicans to do more. Yet here
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  Speaker 1: they are three organizations within this coalition that said, hey,
• 6:41
  Speaker 1: the Trump administration is doing right by us. So they're
• 6:45
  Speaker 1: doing right by some in the health field. We just
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  Speaker 1: want them to do right by all in the health field.
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  Speaker 1: And then the Medical Nutrition Therapy Act, which I will
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  Speaker 1: have h She's a great lady, Lisa Metzger, who was
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  Speaker 1: actually the chair of the event of the forum this weekend,
• 7:03
  Speaker 1: to talk about what that is because of someone who's
• 7:07
  Speaker 1: had nutritionness over the years, and again something that we've
• 7:11
  Speaker 1: been lucky to afford a lot of my medical health
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  Speaker 1: care we've been lucky to afford we've been lucky to
• 7:15
  Speaker 1: get pavement plans. But when you don't have that option,
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  Speaker 1: when you don't have even a supportive family, when you
• 7:22
  Speaker 1: don't have the resources, these acts can save lives. They can.
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  Speaker 1: So let's go through all of them. Because the DNC
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  Speaker 1: did run these down for me in a packet which
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  Speaker 1: was given out to everybody at the coalition this past weekend,
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  Speaker 1: and I want to run down exactly why these different
• 7:56
  Speaker 1: bills matter. And again, as taxpayers, we want to make
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  Speaker 1: sure that these bills are past and that we're making
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  Speaker 1: sure they're passed to just grow. So here they are.
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  Speaker 1: The Help Copays Act requires health plans to count the
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  Speaker 1: value of copay assistance toward patient cost sharingness requirements. As
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  Speaker 1: I understand it, Remember this was the first time really
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  Speaker 1: lobbying advocating on the hill, leaning into this whole thing
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  Speaker 1: to help those digestive diseases and healthcare access for all
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  Speaker 1: have one leg up for all of us. They always say,
• 8:49
  Speaker 1: make the government work for you because you pay them. Well,
• 8:54
  Speaker 1: as I understand the Copays Act, when require health plans
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  Speaker 1: to count the value of copay assistance to where patient
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  Speaker 1: cost sharing requirements and to those who are working with
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  Speaker 1: disabilities and making under forty thousand dollars, to make sure
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  Speaker 1: the copays are affordable for those making under forty thousand,
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  Speaker 1: Why shouldn't we pass the Bipartisan Help Copays Act. Then
• 9:21
  Speaker 1: here's I mean, there were so many, but here's the
• 9:37
  Speaker 1: others that were important to me. The Safe Step Act,
• 9:48
  Speaker 1: the Byparson Bill would establish common sense guidelines for appealing
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  Speaker 1: step therapy programs. I'm sorry, first step bare of the
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  Speaker 1: protocols under ers A Health Plans d d n C.
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  Speaker 1: Digestive Disease National Coalition urges legislators to pass the Safe
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  Speaker 1: Step Act in this Congress one hundred and nineteenth. Step
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  Speaker 1: therapy is one of the many utilization management or cost
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  Speaker 1: shifting tactics employed by third party to shift costs away
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  Speaker 1: from themselves and to the patient, which delays appropriate treatment,
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  Speaker 1: increases patient out of pocket costs, and drives a wedge
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  Speaker 1: between the patient and their health care providers thatcsion making.
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  Speaker 1: And there's all these white papers which were given to us,
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  Speaker 1: and I'm gonna have to keep reading up on these
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  Speaker 1: as we go along here. But if you don't want
• 10:58
  Speaker 1: the insurance company to stand in the way of your healthcare.
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  Speaker 1: Call your congress person and tell them pass the State
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  Speaker 1: Step Act. Pass it today. It would be basically health
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  Speaker 1: plans controlling spending on patients medications. While step therapy can
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  Speaker 1: be an important tool, then the has negative impacts on patients,
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  Speaker 1: including delayed access to the most effective treatment. So here
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  Speaker 1: we are the insurance steps in interferes between the doctor
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  Speaker 1: patient relationship, and this bill would provide an exception process
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  Speaker 1: for any medication step therapy protocol and outlines five exceptions
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  Speaker 1: to fail first protocols. Patient already try and fail on
• 11:53
  Speaker 1: first required drug. Delayed triament will cause irreversible consequences. Require
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  Speaker 1: drug will cause harm to the pay We shouldn't require drug,
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  Speaker 1: and requires a group health plan to respond to an
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  Speaker 1: exemption request within seventy two hours in all circumstances, and
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  Speaker 1: twenty four hours if the patient's life is at risk.
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  Speaker 1: So we don't want delays in people not only of
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  Speaker 1: digestive diseasees, but of any complication. They shouldn't have to
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  Speaker 1: deal with delays at all. They shouldn't have to deal
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  Speaker 1: with insurance interference at all. So, as I said earlier,
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  Speaker 1: the best way to voice frustration is to push legislation.
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  Speaker 1: It's almost like taxation without representation. You can piggyback that
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  Speaker 1: with Hey, if you're frustrated with how things are going,
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  Speaker 1: then push to be have things in coded adopted, constitutional
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  Speaker 1: amendments amended. But these bills should be able to be
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  Speaker 1: passed for the sake of those with these digestive issues.
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  Speaker 1: I hate the word disease, but digestive diseases, digestive issues
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  Speaker 1: and the like. But the Medical Nutrition Therapy Act, as
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  Speaker 1: it was described in our meetings with again a sentimentorial
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  Speaker 1: Leader Chuck Schumer's office, Senator Booker's office. Rep. Jennifer and
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  Speaker 1: Drew's office, Grace Meng's office, is that services to make
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  Speaker 1: sure you're getting the right nutrition while whether with a
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  Speaker 1: feeding tube or having these digestive issues can be preferred
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  Speaker 1: by as physician assistant, nurse practitioner, clinical nurse specialist or
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  Speaker 1: eusource are clinical psychologists. We need to make sure most
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  Speaker 1: of all that patients have the right access to all
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  Speaker 1: of these care. All of this care they call it
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  Speaker 1: parental nutrition, access and reimbursement issues. And so what they're
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  Speaker 1: saying here is that the American Society for Parenturial and
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  Speaker 1: Enteral Nutrition when those issues arise and imburse reimbursements to
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  Speaker 1: those who provide the care are limited. There's insecure that
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  Speaker 1: negative impacts patients and healthcare providers and leads to adverse events,
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  Speaker 1: including death in patients receiving this parental nutrition. And it
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  Speaker 1: also impacts the cost the access to much needed feeding tubes.
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  Speaker 1: And I guess the connectors from the tube to the
• 15:31
  Speaker 1: device that's in the stomach already. And I'm gonna have
• 15:38
  Speaker 1: experts in all of these as we go along, because
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  Speaker 1: we have until March fourteenth. But then we gotta think
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  Speaker 1: of the bigger conversation. We can kick the can down,
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  Speaker 1: we can keep the funding as is, which will be great,
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  Speaker 1: but what can we do more than just a stopgap measure. Yes,
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  Speaker 1: the stopgap measure is so important to keep everything going,
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  Speaker 1: but let's take it one step for Let's have one
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  Speaker 1: leg up beyond just stop gap measures and really push
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  Speaker 1: for these measures, real measures to be passed. And did
• 16:19
  Speaker 1: you know, by the way, when it comes to oustomes
• 16:24
  Speaker 1: and when I whipped out the osteme bag that I
• 16:26
  Speaker 1: have just as a show, is a supply that's needed.
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  Speaker 1: Because there's also a thing called medical switching where they
• 16:37
  Speaker 1: literally will tell you, oh, no, you don't want those supplies.
• 16:39
  Speaker 1: We can accommodate those supplies. You need these ones. Imagine
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  Speaker 1: losing your losing your ability to go to the bathroom,
• 16:50
  Speaker 1: and then after having this trauma to the body of
• 16:53
  Speaker 1: a soma installed, you then can't get the supplies you're
• 16:56
  Speaker 1: already recommended, and you're just starting out with this. I
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  Speaker 1: have to believe, you know, thank God, I was born
• 17:02
  Speaker 1: with this omni after six hours old. But I have
• 17:08
  Speaker 1: to believe that those traumas, those traumas are so overwhelming
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  Speaker 1: that then they say, oh well, the insurance company say, well,
• 17:27
  Speaker 1: you can't get anything. We have to shift to another
• 17:34
  Speaker 1: supply that's gonna be even more trauma and more stress.
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  Speaker 1: So shouldn't the government work for us by enabling less
• 17:42
  Speaker 1: stress and passing resolutions that will bring less stress to
• 17:46
  Speaker 1: the disabled community and not more. Well, I'm gonna say
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  Speaker 1: one more time, we must voice our frustrations by pushing
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  Speaker 1: for legislation. And that's how we have one leg up
• 18:02
  Speaker 1: for those but not only digestive diseases, but all kinds
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  Speaker 1: of conditions. And if we have that inroad to Congress,
• 18:12
  Speaker 1: maybe we should keep making more trips down to DC.
• 18:14
  Speaker 1: And keep advocating for more, because if you're not as
• 18:19
  Speaker 1: fortunate to have that resource Europe, you know what's creek,
• 18:26
  Speaker 1: and we shouldn't have that. That shouldn't be American's divisibilities
• 18:33
  Speaker 1: should really come first in the whole line of care,
• 18:38
  Speaker 1: not an afterthought. That's why we're voicing our frustrations by
• 18:48
  Speaker 1: pushing for legislation. And we'll hear from experts across the
• 18:52
  Speaker 1: board and those who have had stories of pancreatitis, ostomes
• 18:57
  Speaker 1: and more throughout the week and hopefully before March fourteenth,
• 19:02
  Speaker 1: so we can really hit home the point why this
• 19:05
  Speaker 1: Congress needs to act now. And one person that did
• 19:08
  Speaker 1: that really well, I thought, was our advocacy manner manager,
• 19:12
  Speaker 1: Janine Gliba, who's the nicest gal possible, by the way,
• 19:16
  Speaker 1: nicest gal, nicest lady. And she told me this outside
• 19:25
  Speaker 1: of the capital, amidst this publicly public policy forum. Well,
• 19:31
  Speaker 1: if you ask me when I signed up to be
• 19:33
  Speaker 1: part of the UOAA unit Oscome Association of America that
• 19:37
  Speaker 1: i'd be talking with our advocate leader, Janine Gliba, I mean,
• 19:41
  Speaker 1: I who knew this would be happening, But I'm so
• 19:43
  Speaker 1: glad to finally meet you.
• 19:44
  Speaker 2: I'm very happy to be here and so happy you
• 19:46
  Speaker 2: came down to detail.
• 19:48
  Speaker 1: I was so focused on your presentation because you're representing
• 19:51
  Speaker 1: how many millions of Americans have OSMED?
• 19:53
  Speaker 2: How much about about one million having OSME or consonant diverging.
• 19:57
  Speaker 2: Oh yeah, it's pretty big. Were an underserved pa popular absolutely.
• 20:01
  Speaker 1: Tell us why this is so important.
• 20:02
  Speaker 2: To you though, Oh my goodness. Like I said, I
• 20:05
  Speaker 2: just think it's a crime that so many people suffer
• 20:08
  Speaker 2: and what they have to go back bad enough they
• 20:10
  Speaker 2: came to this situation to need this type of surgery,
• 20:13
  Speaker 2: but then not to have their supplies covered, or to
• 20:16
  Speaker 2: receive poor care you know when they're in the hospital,
• 20:20
  Speaker 2: or not have access to their ostuin nurse. So there's
• 20:23
  Speaker 2: just so many things that we need to face.
• 20:25
  Speaker 1: And you know, you'll talk about the supply switching thing,
• 20:27
  Speaker 1: and it blows my mind because the doctors do give
• 20:30
  Speaker 1: us one thing and the insurance tells us something else.
• 20:32
  Speaker 1: Is that what goes on?
• 20:33
  Speaker 2: Sometimes it does. Sometimes your insurance might restrict you to
• 20:35
  Speaker 2: a certain brand, or they might restrict you to a
• 20:38
  Speaker 2: certain supplier, and then that supply might not cover the
• 20:41
  Speaker 2: supplies that you need. And some people have you know,
• 20:45
  Speaker 2: their patting system. It fits their particular needs. And you know,
• 20:49
  Speaker 2: some people have allergies and they can't use every type
• 20:52
  Speaker 2: of They're not one size fits.
• 20:54
  Speaker 1: Of Jeanine, I run this adapting podcast. So for those
• 20:57
  Speaker 1: who may be adapting to anostomy, I've had it a
• 20:59
  Speaker 1: thirty three years of whole lie. Those who are adapting
• 21:01
  Speaker 1: it today, what's your message.
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  Speaker 2: To them that you can have a wonderful quality of life,
• 21:06
  Speaker 2: that there are people out there to support you, that
• 21:10
  Speaker 2: you it will be like again walking down the street.
• 21:14
  Speaker 2: You never know someone has an oscome.
• 21:16
  Speaker 1: And you've been doing this for a while now.
• 21:17
  Speaker 2: I've been with u OAA for almost nine years.
• 21:19
  Speaker 1: So what's your approach when you go to see all
• 21:21
  Speaker 1: these different senators and congressmen and what what advice would
• 21:25
  Speaker 1: you have when someone goes to advocate with these people.
• 21:27
  Speaker 2: For me, I think the number one thing is that
• 21:29
  Speaker 2: education because most people don't even know what an ostemy is,
• 21:32
  Speaker 2: so I just take it as an opportunity to educate them,
• 21:35
  Speaker 2: you know, on what an ostery is, raise awareness about
• 21:38
  Speaker 2: the issues that affect our patient population. And again, we
• 21:42
  Speaker 2: support many different people. You know, it's all different reasons
• 21:46
  Speaker 2: why someone might eat an oster be. So for example,
• 21:49
  Speaker 2: the Safe Step Aact. We you know it doesn't it's
• 21:51
  Speaker 2: not necessarily because of ostome. But someone with IBD might
• 21:55
  Speaker 2: have been sure they might have their ostery because of
• 21:57
  Speaker 2: their IVD.
• 21:58
  Speaker 1: And I noticed the diagnosis are always coming late for
• 22:01
  Speaker 1: some people. How do we fix that that?
• 22:04
  Speaker 2: I don't know, that's probably.
• 22:06
  Speaker 1: A doctoral question. Yeah all right, it's amazing this time
• 22:09
  Speaker 1: because just Friday was was Rare Disease Day. I mean,
• 22:12
  Speaker 1: what timing for this conference, right?
• 22:13
  Speaker 2: Yeah, well we have at the same time every year,
• 22:15
  Speaker 2: the first Sunday and Monday in March. So it did good,
• 22:19
  Speaker 2: but especially with everything going on right now.
• 22:21
  Speaker 1: One last thing I saw one of the emails, not
• 22:23
  Speaker 1: every state recognized awesome awareness. Has that change? Did everybody
• 22:26
  Speaker 1: recognize it eventually? Or is that like that?
• 22:28
  Speaker 2: But we depend on our advocates because again you heard
• 22:31
  Speaker 2: that today too. They want your elected offishers want to
• 22:34
  Speaker 2: hear from their constituents. So we need constituents in every
• 22:37
  Speaker 2: state to advocate to have us to the Awareness Day recognized.
• 22:41
  Speaker 1: And I follow it on my podcast every year. So
• 22:43
  Speaker 1: thanks for put Yeah.
• 22:45
  Speaker 2: Yeah, yeah, well we should do a podcast.
• 22:47
  Speaker 1: We will awareness that once all this is craziness over,
• 22:51
  Speaker 1: We'll do it long form podcast.
• 22:52
  Speaker 2: We also have a national conference there. I don't know
• 22:55
  Speaker 2: if you know about it.
• 22:55
  Speaker 1: I did not, but we should find out maybe that
• 22:58
  Speaker 1: later and I see you later. But yeah, thank thank
• 23:01
  Speaker 1: you very so much, God bless what a sweet lady did.
• 23:06
  Speaker 1: He give me a certificate for being part of it.
• 23:08
  Speaker 1: And I want to thank Mom again for checking down
• 23:11
  Speaker 1: to DC with needed to share our story because I
• 23:13
  Speaker 1: feel like if I'm gonna have this platform of having
• 23:17
  Speaker 1: one leg up, well, going to the front line and
• 23:20
  Speaker 1: making sure people can have one leg up is major
• 23:33
  Speaker 1: and much needed. So let's work together to voice frustration
• 23:39
  Speaker 1: by pushing legislation and I would even say ease frustration
• 23:48
  Speaker 1: through legislation on the One Leg Up Network