In this video I get to meet with my congressperson virtually through the Rare Across America virtual advocacy event. I let you see a little bit of what I say in a meeting. Then I also want to bring attention to the PASTEUR Act. A bill designed to encourage the development of antimicrobial resistance treatments.
I volunteer doing advocacy and just started a couple years ago. I love being able to tell my story and hopefully work with my representatives to insight change. Healthcare is something I am passionate about, so I advocate to make things more accessible and the system easier for all.
Watch the video below
If you prefer to read it, here is the transcript:
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That is why I advocate. I advocate not only for myself and for my own interests and, you know, to try to get stuff to change. But I really think about the people who are going to be potentially diagnosed with a chronic illness tomorrow that are not going to be able to have all of the knowledge that I have having chronic illness and disability
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since 12.
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So I’ve gotten dressed. I’m wearing my zebra
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because
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it’s rare disease week. That’s what I’m advocating for.
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I’m going to be talking to
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a congressional aide, legislative aide
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in my congresspersons office
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and
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right now, it’s about 15 minutes before our scheduled time. So I’m going to log on and then I’m going to go over the papers that I’ve written, as well as the acts that I’m asking them to pass, just so that I have it kind of fresh in my mind, you know, make sure audio works, all that sort of stuff.
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That’s normally what I do
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when
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I’m getting ready, so
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let’s do it.
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So today
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I’m with the
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rare disease community.
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They originally wanted us to talk about the HELP Co-pays Act and the
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Safe Step Act.
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Okay. I’m going to pause here for a second. I have to say that editing the video of me in this meeting was humbling, to say the least. So many ums, throat clearings and hair touching. I highly recommend recording yourself and speaking as it will help you. I know it will definitely help me.
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Another one that
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actually, even within the advocacy community, doesn’t really seem to be getting a lot of steam behind it is the PASTEUR Act, which was introduced earlier this year. And
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I think it’s sitting in a committee right now for the house.
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The PASTEUR Act seeks to address the lack of drug development for antimicrobial resistant bacteria, funguses and viruses.
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I’m really passionate about this particular act because my rare disease is a primary immunodeficiency, which basically means that I was born with an immune system that doesn’t function properly. And because of that, bacteria that normally sits on our skin or is in our mouths, that for most people is usual and doesn’t harm them in any way. My body doesn’t see it that way and I tend to get sick a lot.
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It tends to replicate a lot in my body. So I rely heavily on antibiotics and I have for my entire life. So because of that, I’ve been on antibiotics a lot. I do think about antibiotic resistance a lot because it is happening more and more around the world. It is it is talked about by the CDC, by the WHO, that this is a very large issue.
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I personally do not want to not rely on antibiotics because it is one of only two treatments for the primary immunodeficiency that I have.
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All right. So that meeting went really well.
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The legislative aide was very receptive to actually doing some research on the PASTEUR Act, which is my ask.
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It was something that I actually didn’t even know about until I emailed the individual that was responsible for putting together this awesome fly in saying that my congressman has already co-sponsored the HELP Co-pays Act as well as the Safe Step Act.
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So what else should I be asking for? And the PASTEUR act, I wanted to ask for that
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for my congressperson to be a co-sponsor, simply because the pastor acts specifically outlines how the U.S. government will help to incentivize companies to make antimicrobial resistant
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treatments.
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I have a primary immune deficiency, which means that my immune system doesn’t work and it hasn’t worked since birth.
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So I have taken a lot of antibiotics in my lifetime. And it is something that we do talk about within the primary energy efficiency space that taking antibiotics for long periods of time. We’re scared that we’re going to end up getting a antibiotic resistant bacteria and that there will be absolutely no option for us and that we will potentially not be here anymore.
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So
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I am now very passionate about this particular act at this moment, simply because it will help to incentivize companies to do this. It’s a really important thing that a lot of people don’t think about. It’s the tiny things like this that can kind of push forward medical care for everybody worldwide because this would be something that everybody would potentially benefit from.
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I really started to do advocacy work because I wanted to do something to try to actually inflict change into the system that I’ve been a part of for years. I want to work with people in Congress and in the Senate and at the local level to put forth laws and get them passed that help protect patients and help protect health care workers and that really push forward the advancement of medicine.
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If you liked this video, you might like this one next. Thanks so much. I’ll see you next time.