HemoAware Podcast - Episode 2 - HTCNV Discrimnination

Updated: Sep 26

In the episode, Jesse John Francis Clark describes how his local Hemophilia Treatment Center (HTCNV) and Amber Federizo gave him two options: sign a contract to try to silence him or discharge him as a patient. Tune in to find out what happened.

Transcript of Episode 2


INTRO AUDIO:

Welcome to the HemoAware podcast with your host, Jesse Clark: the show to promote public awareness about rare inherited bleeding disorders.


Jesse John Francis Clark:

Welcome to episode two of the HemoAware podcast. I'm your host, Jesse Clark. I can't believe I'm making an episode this soon. I thought it was going to do this quarterly, but I got some breaking news today. Today, officially, I am HTC homeless. Do you know what that means? It means I don't have a Hemophilia Treatment Center anymore. I do not have a local provider. I don't have someone I can turn to in regards to my hemophilia. That all went kaput.


I'm going to tell you a little story of what happened, a little drama we have here in Nevada, and we'll go from there. So, to keep this long story short, couple of years ago, my local HTC asked me if I wanted to manage their Facebook page. They're a brand new HTC.\ They're the only federally recognized HTC here in Nevada. They asked me to manage the Facebook page pro bono, I wasn't getting paid for it, and basically just drive traffic to the Facebook page, get people to get the word out, share hemophilia-related news, bleeding-related news. So that's what I did. This is when the first five deaths occurred in regards to HEMLIBRA. I went on the Facebook page, the HTC, and posted about the first five deaths on HEMLIBRA. I thought it was important to let the community know, so I pretty much forwarded a story in regards to the first five deaths. And immediately, when I posted it, the family practitioner there at the HTC locked me out of the Facebook page and deleted the post. It was suppression and it wasn't right. I didn't say anything at the time and I basically told them, "You handle the Facebook page. If you're going to censor me, then forget about it. I'm not going to manage it."


So, gave the Facebook page back and moved on with my life, just continued being a patient there and didn't really say anything about it, and life went on. And then, I got involved with the local NHF Chapter here in Nevada and was the secretary for the board. I got to see what was going on there and put two and two together and realized this is shady and I resigned. I resigned from the board and started HemoAware.


So, after I started HemoAware, I gave it a couple of months and I asked a couple of my employees here at HemoAware to go over to the HTC and see if they wanted to partner up with us, just to see if we could get involved with the community, put on events, raise some money, help our community out, and they said no. That was the first time. And then, I waited a couple of months to see if they would partner up with us again and nope, they didn't partner up with us. That was two shots we went over there to see if we could partner up together and they said nope. And the reason why? Because they're in bed with NHF. They ain't going to partner up with an independent nonprofit.


But I tried and I wanted to do that just so I have a record of that we did try to reach out. And I knew they weren't going to do anything with us, but I wanted to give the opportunity before I told the community about it. So, that was two strikes there that they didn't want to partner up with us. And then, I also asked the HTC if they wanted me to create a better website for the center because the one that they have now is very juvenile-looking and they are the only federally recognized HTC here in Nevada and their website, it looks like a seven-year-old created it. I mean, it is bad and I offered to make a website because that's my background. I was doing websites when I was in high school. I was coding after school during seventh grade. And they said, "No. We don't have the budget to pay you to do our website." I'm like, "Okay." I've asked and I've completely gotten ignored, so it kind of pissed me off a little bit.

So, I went out and bought their domain name and they have the dot-org name, so I went out and bought the dot-com extension. Because most people, when they enter in a website, they use dot-com. They don't really know that it's a dot-org. So when I bought the domain, I forward it to HemoAware, so all of their traffic was being sent to HemoAware. And basically, it was like an F.U. but also I wanted the community to know that we existed, so it was like advertising. Apparently, my HTC just found out that I purchased their dot-com extension.

Now, I own this extension for the past, oh, over a year now, and I've been driving traffic to the site for well over a year and they just figured out and now they're pissed. So, I went in there today for my regular visit and the family practitioner in there walks in. She's the one who's been treating me for the past six/seven years now, and she hands me a... I don't know... a contract. It was a one-page contract; it had two paragraphs on it. Basically, it was a... She called it a behavior contract.


Now I don't about you. I went to law school for three years; I never heard of a "behavior contract" and they wanted me to sign it. Basically, the clauses were that I can't buy any dot-com extensions anymore. I can't say anything bad against the HTC. I can't post anything online regarding the HTC or what goes on in my name, or any aliases, or anonymously. And I'm looking at this thing and I'm like, "This is a contract of adhesion." For those of you who don't know what a contract of adhesion is, it's a one-sided contract. It only benefits one party. I also looked at the back of the contract and there's only one signature line. Usually, if it was going to be a legal contract, both parties should sign the contract. So, I handed it back to her and I said, "Let me think about it for a week, and she says, "No, you got to sign it right now. We're not giving you a week. You got to sign right now. If you don't sign it now, we're going to discharge you as a patient." I'm like, "Okay."


First of all, they were going to give me 30 days and then they were going to discharge me. We got into some back and forth and one thing led to another and I just walked out and I just didn't like what was going on. Who makes a patient sign a contract like that? That just is crazy. And obviously, it bothers them that I am a voice in the community. To go to the lengths of trying to silence me, that's shady if you want to ask me. So, I am currently HTC, homeless. I do not have a provider for my hemophilia. I don't have any factor on hand and I don't know what I'm going to do. If I die, I die.


My family can file a wrongful death lawsuit against the HTC, but I don't know. I've contacted a few of my people who handle this stuff, so I might be bringing a lawsuit against HTC. If I do that, I'm going to let everyone know. I might even document the whole thing, do a documentary or whatever. But yeah, I wanted to let you guys know what was going on in regards to the current drama; so I am HTC homeless. It is what it is, but that's what happens when you try to go against the grain in this community.


So, definitely will keep you guys updated. I wanted to come on here and make episode two of the HemoAware podcast and maybe this is more content for me to make more podcast episodes. I don't know. I thought about doing this on a quarterly basis. It may be on a pretty frequent basis now. Anyways, thank you for listening, for tuning into episode two, and I will keep you guys posted.


OUTRO AUDIO:

Thank you for listening to the HemoAware podcast. To learn more about HemoAware or to catch up on recent bleeding disorder news, visit hemoaware.org.

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