If you've been around for a while, you might have heard me say this once.
Speaker AOr more.
Speaker ARFK can suck a lawnmower.
Speaker AAnd we're going to talk about why.
Speaker AAll right, here we go.
Speaker AI'm going to pretend I'm pushing record, because that feels right.
Speaker AOkay, I'm pressing record.
Speaker ABoop.
Speaker AHi, everybody.
Speaker AI'm Lauren Howard.
Speaker AI go by L2.
Speaker AYes, you can call me L2.
Speaker AEverybody does.
Speaker AIt's a long story.
Speaker AIt's actually not that long a story, but we'll save it for another time.
Speaker AWelcome to Different Not Broken, which is our podcast on exactly that.
Speaker AThat there are a lot of people in this walking around feeling broken, and the reality is you're just different, and that's fine.
Speaker ASo, quick rundown of the rules.
Speaker AWe talk about this every time.
Speaker AIf you want to know more about them, pop back to our first episode.
Speaker AFirst, I'm going to curse a lot if bad language is a problem.
Speaker ASorry.
Speaker ASecond, I'm going to tell a lot of stories, even on things that don't sound like they have stories.
Speaker AThird, I'm going to tell a bunch of dead dad jokes.
Speaker AIt's just par for the course around here.
Speaker AAnd fourth, anything that comes out of your face is appropriate here, so you do not have to worry about filtering any part of you to join us in this space.
Speaker AI've made zero secrets, exactly zero secrets about my feelings about Robert F.
Speaker AKennedy, Jr.
Speaker AAnd his harem of assholes who are currently making decisions for American healthcare with all of the experience of a toddler that's never even had a cold.
Speaker AAnd so that is just terrifically exciting for me, especially as somebody who not only runs a number of different healthcare organizations, but also runs one specifically built for people with autism or who are looking for autism diagnosis.
Speaker AI really love the work he's doing in the autism space right now.
Speaker AAnd if you can't tell that that's sarcasm, that actually checks out.
Speaker AThat was sarcasm.
Speaker ASo this guy, to be very clear, this guy is a giant jackass, and I would like the world to know that he is peddling and has for many, many years peddled, debunked junk science that was proven to not only be completely false and fabricated, but also cost the medical licenses of the people who.
Speaker AWho created this horrible, debunked research.
Speaker AIt's not research, it's fiction.
Speaker ASo he's been peddling that for years, and before someone made him the director of Health and Human Services in the United States.
Speaker AIt was obnoxious and it was harmful on a small scale.
Speaker ABut now he's going to roll out all of this absolute trash to the nation as a whole.
Speaker AIt started with him.
Speaker AI mean, it started well before this.
Speaker ABut the particular stress about this, let's say the turning point of when this became, what is this guy going to do to, oh, he's going to go full eugenics, was a couple of weeks ago when he got in front of a microphone and said that autistic people don't pay taxes and that they ruin families and they're a drain on society and they do terrible things to their families and that they are over and over and over, they're just a burden.
Speaker AWe said that many times.
Speaker AJust a burden.
Speaker AThis is obviously very untrue.
Speaker AVery, very, very untrue.
Speaker ABut also harmful in so many ways, including the fact that it has created infighting within the community because there's this idea of good autistics versus bad autistics, which is not a thing.
Speaker ANot a thing.
Speaker ABut also real autistics versus fake autistics.
Speaker AThat's another narrative that's happening right now.
Speaker AAnd all of this, I'm sure it existed before in some capacity, but all of this is emerging from these stupid, stupid things that he said that now is making people feel like their resources are going to be taken away, their ability to exist as they are are going to be taken away.
Speaker AIt's just created a whole lot of bullshit that does not need to exist.
Speaker AThese people already have it hard enough.
Speaker ARegardless what level of support needs they have.
Speaker AThey already have it hard enough.
Speaker AWe don't need to be creating artificial problems that they now have to jump through, especially coming down from our federal government.
Speaker ABut it was then compounded after he said these horrible, awful things that he walked back in the weakest way possible, basically saying that I'm not talking about the people with autism who are able to pay taxes.
Speaker ASo, so creating this idea that the only benefit to you existing is if you can pay taxes and support the government so that our billionaires don't have to.
Speaker AI guarantee you that guy doesn't pay taxes.
Speaker ABut it's really important to him that disabled kids pay taxes.
Speaker AThat's really, really important to him.
Speaker ASo it was then quickly followed up with this thing that he said, which is that they're going to create a registry of autistic people.
Speaker AAutistic people will be required to register.
Speaker ANow, two days later, they came back and said, oh, we're not going to require that.
Speaker AWe're just going to pull things from existing data sources and they keep changing how they're going to get it, what they're going to do.
Speaker AThe thing that really blows my mind is that his initial conversations about starting this registry made it sound like they were just going to pull medical records from every patient in the whole United States to identify who's been diagnosed with autism so that they can put them on this list regardless of their opt in, regardless of their willingness to participate.
Speaker AAnd then we were going to figure out the causes of autism and then they walked it back a couple days later.
Speaker AThe thing that drives me crazy, aside from all of it, to be clear, there's not one part of this that is worse than others, but this is the part that most people don't understand and also the reason why he's a disingenuous.
Speaker AHe did not walk it back initially because of the outcry, which was big and I was part of it.
Speaker AOf registries are for fascists and you are not going to create a master race by labeling all the autistics.
Speaker AI am certain that he walked the initial claim back because he thought that he was going to push the medical record big red button at the big powerful government that stores every patient's medical record and he was going to be able to get all of this information with one button.
Speaker AAnd I'm sure somebody looked at him and went, that's not how this works.
Speaker AAnd quickly realized that not only is this man making healthcare decisions with no health care background, but he doesn't understand the fundamental problems with information sharing in health care and thought he was going to build a registry off of a bunch of systems that do not exist.
Speaker AInteroperability in health care has been a challenge for as long as we've had electronic health records.
Speaker AThis idea that there's a big government button to pull records so that you can see what everybody's up to.
Speaker ANot a thing.
Speaker AThere is no HIPAA button.
Speaker AThere is no look at all the protected data button.
Speaker AThere shouldn't be.
Speaker ATo be clear, I'm not advocating for one.
Speaker AThere should not be a way for somebody to hit a button and get everybody's medical information.
Speaker ABut he knows so little about health care in our country, the healthcare that he is now responsible for running and overseeing that he doesn't understand the fundamental pieces of how we share information and why what he wants to do is not possible.
Speaker ASo we have an ehr.
Speaker AWe have an electronic health record where all of our patient data is stored.
Speaker AOnly we have access to it.
Speaker ANobody else can get into it.
Speaker AWe do not publish to what's called HIEs or Health Information exchanges where you can both publish to and pull data from.
Speaker ABut they are voluntary, meaning an organization has to decide to and pay a lot of money to both publish and pull information down.
Speaker AI think there's like four primary HIEs.
Speaker AYou have to get individual access to every one of them.
Speaker AYou have to intentionally go pull data or build out a system that allows you to automatically pull things down.
Speaker ALike you have to build out the code that will allow you to pull things down automatically.
Speaker AThere's an opt in.
Speaker AYou have to have a patient permission.
Speaker ALike it's a whole thing.
Speaker ASo these systems exist if you voluntarily participate.
Speaker ALarger health systems, I don't know this for certain.
Speaker AI don't actually have the data on this.
Speaker ALarger health systems probably do participate in these things.
Speaker ABut mind you, these are not government systems.
Speaker AThese are independent companies that have created these databases where information can be shared to and pulled down from.
Speaker AThey're not government supported, they're individual companies who operate or who interact with other systems.
Speaker AThere are probably a few thousand different electronic health records that you could use for your practice.
Speaker ASometimes there's like little niche electronic health records.
Speaker ALike we use one that is specifically for small organizations because we don't need 7,000 tabs and referrals and access to a bunch of lab ordering and things like that.
Speaker ALike what we need is very simple.
Speaker AIf you go to your local health system or hospital, their systems are complex.
Speaker ATheir systems are so complex that they have different interfaces for different specialties.
Speaker AThey have entire teams of people who maintain them.
Speaker AThey're very complex, they're very complicated.
Speaker AIf you need something fixed or changed, it's a long, long lead period to get it done because somebody actually has to go and code the change and it could affect other departments and it could.
Speaker AI mean it's complicated.
Speaker AAnd even with all of that complication, there still is not a download records button.
Speaker AThere still is not a one easy way to go in and pull down every record on every patient that they've seen.
Speaker AAnd they could have seen millions of patients.
Speaker AThere are other electronic health records that are what's called on prem, meaning your server is right next to you and so nobody has access to it.
Speaker AIt's not cloud based.
Speaker AThere are people who still try it on paper and I can't believe I'm saying this in 2025 but good for fucking them.
Speaker AThey should be charting on paper.
Speaker AI've considered it strongly because we're telehealth.
Speaker AIt's a little harder, but I very.
Speaker AI've seriously considered taking all of my providers Offline because nobody's getting my patient information, regardless if they want it or not.
Speaker ASo the ways that health information does not automate automatically share back to anything, is protected under multiple layers of security, is shared out in very disparate ways through very disparate systems.
Speaker AAnd the information that often leaves practices that is not the medical records is a series of codes that means nothing to anybody who doesn't understand the codes.
Speaker AAnd I'm not even, I'm not talking about like any engineering code.
Speaker AI'm talking about CPT and ICD 10 codes that mean something to somebody like me who has been operating within them for a million years, but mean nothing to other people.
Speaker AI can look at a code and usually tell you what kind of code it is just based on having experience billing and coding.
Speaker ABut most people look at it and go, can someone just tell me how much this costs?
Speaker ABecause I don't understand this.
Speaker ABut you don't have a code that tells you this person has this disease and received this treatment and responded well to this treatment.
Speaker AAnd that's what the medical records are for.
Speaker ASo he thinks that they're gonna hit, or thought, I don't know, that they're gonna hit the information button.
Speaker AThey're gonna get all of the information into their giant magical record system and they're going to know everything about every patient in the world.
Speaker AIt's literally not possible.
Speaker AThere are a thousand different systems, some of which that connect to others, some of which don't.
Speaker AThere are even these larger systems allow health systems and large hospital systems to let small practices lease space on their servers so that you can get access to a really, really expensive ehr that a small practice wouldn't be able to afford.
Speaker AAnd they do it for like, nonprofits and things like that.
Speaker ASo even those technically exist on one of these larger systems, but they're never, they're almost never set up to share information in the way that the parent account is.
Speaker AAnd what do they think they're going to do with this?
Speaker AThe point is they don't know.
Speaker AThey have no idea.
Speaker AThey are now finding out now, after however many days this has been his job, that there isn't a magic button that somebody, somebody told them, well, you could probably get claims data from Medicare and Medicaid, which they've been very clear that they plan to do.
Speaker ASo what they're going to do is run a big regression where they can pull all of the autism codes and get information on everybody who has autism.
Speaker ABut again, those are codes not to say that they shouldn't have the information that says this person has autism because they absolutely should not have that.
Speaker AThat is not their business.
Speaker AAnd they should have known designs on it.
Speaker ABut they think that claims data is going to tell them something other than who uses what services what.
Speaker AIt's not going to tell them history.
Speaker AIt's not going to tell them symptoms.
Speaker AAnd then they're doing other stupid stuff like they're going to pull pharmacy data.
Speaker AThey're going to use pharmacy data to gather information on patients with autism.
Speaker AYou know how many prescriptions there are for autism?
Speaker AYou know many medication treatments there are for autism?
Speaker AGuess.
Speaker AZero.
Speaker AZero.
Speaker AThere are no medications.
Speaker AWhat do you think you're going to get from a pharmacy?
Speaker APerson came to the pharmacy and didn't get my joke.
Speaker AWhat do they think they're going to get?
Speaker ABut they have no idea what they're doing.
Speaker AThey have no idea who they're dealing with.
Speaker AThey have no idea who they're marginalizing.
Speaker AThey just think that they are going to pull all of this information and get some sort of valuable direction on the causes of autism.
Speaker AAnd they keep saying they want to figure out the causes of autism.
Speaker AThey're going to do all of this quote unquote research, scientific research to figure out the causes of autism.
Speaker AFirst off, we know the causes of autism.
Speaker AStop having sex with other autistic people.
Speaker AProblem solved.
Speaker AExcept it's not solved because our goal is not to wipe out people with autism.
Speaker AThere's nothing wrong with people with autism.
Speaker AHaving a disability does not mean you should be wiped off the face of the planet.
Speaker AWe know that it is a neurodevelopmental disorder.
Speaker AThat's what it's called.
Speaker AWhether you think it's a disorder or not is a totally different argument.
Speaker AWe know that it is largely identified in genetic groups.
Speaker ASo you might not have autism, but you have autistic traits in your family.
Speaker AYou have a child with somebody who either has autism or has those traits within their family.
Speaker AYou, your genes go do the mashy mixy thing and now you have a baby that has autism.
Speaker AAnd that's what happens.
Speaker AWe know that that's not new information, but they think they're going to find out the quote, unquote causes of autism.
Speaker ATo be clear, they don't think they're going to find out anything.
Speaker AThey think they're going to prove this widely debunked thing by manipulating the data that they pull to prove that vaccines cause autism and that nobody should take the MMR vaccine and that children dying from measles is just not a Big deal.
Speaker AIt's just no big deal.
Speaker AWhy don't we just let the kids die from measles?
Speaker AMost kids don't die from it.
Speaker AIt's only like 20% of kids who get the worst case of it.
Speaker AIt's not a problem.
Speaker AWe can let them go, right?
Speaker AThat's the pro life crowd for you, by the way.
Speaker AThat's the pro life crap.
Speaker ABut why would somebody be so incentivized?
Speaker AWhat could possibly incentivize somebody to so obsessively go after something that we already know?
Speaker ATo be clear, I'm not against research on autism.
Speaker AIn fact, I'm fully supportive on actual scientific, university led, academic led research on autism.
Speaker AWhether it comes from one of our big health institutes, whether it comes from whatever, I don't care.
Speaker AAs long as there are scientists behind it.
Speaker AStudy it.
Speaker AMaybe we can figure out something that could improve lives, mitigate some of the more uncomfortable symptoms, Just make it so that people are happier and healthier.
Speaker AI'm not against that.
Speaker AI'm not eager or hopeful that we're going to come out on the other side with some sort of whatever that's going to give us what we're trying to find out.
Speaker ABut like, do the research.
Speaker AThe worst thing that comes from doing research is that you disprove your hypothesis.
Speaker AThat's the point of doing research.
Speaker ABut that's scientific research.
Speaker AWhat they're trying to do is market research, and that is not a scientific pursuit.
Speaker AAnd why does that matter?
Speaker ARFK has made all of his money on vaccine injury lawsuits.
Speaker AThis is not a personal crusade that he has because he wants to make children healthier.
Speaker AHe makes his money suing vaccine companies or vaccine manufacturers for vaccine injuries.
Speaker ASo if he can harness the power of the federal government to prove that there are more vaccine injuries, he can make a whole hell of a lot more money.
Speaker AAnd he knows that the people who are still willing to do work within the federal government right now are also willing to manipulate their findings because it's not scientific research, it is market research.
Speaker AHe is trying to make himself richer on the backs of the federal government.
Speaker AWe know that's the person he is.
Speaker AHis family says that that's the person he is.
Speaker AThey have been very, very clear that that's the person that he is.
Speaker AThey've been public about it.
Speaker ASo we're not talking about a giant push from the federal government to solve a problem that is affecting the lives of millions of Americans.
Speaker AWe are talking about a push from one dude who has created a crusade with the intent of dying Richer.
Speaker AAnd he's not even subtle about it.
Speaker AAdditionally, you do not do a scientific meta analysis in six months.
Speaker AIt's not happening.
Speaker AThey created this artificial date of when they're going to know the cause of autism.
Speaker ASix months.
Speaker ASeptember.
Speaker AIt was six months from when they initially said it.
Speaker ANow it's like four and a half months or maybe four months.
Speaker ABut they have a closed date of this thing by September.
Speaker AThey're gonna have all of the answers by September1.
Speaker AThat's how you know there's no actual scientists involved.
Speaker AThere's no actual scientific research happening there.
Speaker ABut you know what you can do in six months?
Speaker AMarket research.
Speaker AYou can do lots of market research that you can manipulate to look however you want it in six months.
Speaker AThat's plenty of time.
Speaker AIt's plenty of time to investigate the different cases that you think should be included in a lawsuit.
Speaker AYou could do tons of that in six months.
Speaker ASo if you're looking for the altruism, if you're looking for this intention that he's gonna make, you know, make America healthy again.
Speaker AThat's what they're saying.
Speaker ANo, it's make RFK richer again.
Speaker AThat's what he's trying to do.
Speaker AIt's the same.
Speaker AThey all have the same motivation.
Speaker AAll of these jackasses who are currently running our federal government, they all have the same motivation.
Speaker AAt the end of the day, how do we set this up so that it pays us back?
Speaker AIt's the same reason that Trump is pulling this tariff bullshit.
Speaker ABecause if he messes with the markets, if the markets tank because he's screwing around or something, he and his buddies, not him.
Speaker ATrump doesn't have any money, but his friends do.
Speaker AThey can go invest and then when the markets rebound, they make a bunch of money and all of the middle class people lose everything in their 401ks, but they don't care.
Speaker AThey don't care because this is about their pocketbooks and reinforcing billionaire class and everybody else can go fuck themselves.
Speaker AIt's all the same thing, it's all the same grift repackaged in different ways, except this time they're using it to justify eugenics.
Speaker AAnd I don't know about you, but I really have no desire for a master race.
Speaker AIt's certainly not white people, to be clear, so there's that.
Speaker ASo for this week's small talk again, remember, this is something we do every week.
Speaker AHere's Alison.
Speaker ASo the next question we have comes from threads and it's how do I answer?
Speaker AWhat do you do for a living, when I'm not really proud of the answer and don't want to discuss it, but need to avoid offending the person who asked.
Speaker ASo that's a really good question.
Speaker AFirst off, if you're doing a job and it is a productive endeavor, whether you enjoy it or not, if it pays your bills, if it comes close to paying your bills, if you are contributing something to your life or someone else's, you should be proud of the fact that you are doing that.
Speaker AEven if you don't like the work, even if it's a space you don't want to be in forever, you can be proud of that.
Speaker AThat there is no shame in any job.
Speaker AWe need people to do every job.
Speaker AAnd if you are working in a restaurant and you want to be working in an investment bank, that doesn't mean that working in a restaurant is not great work.
Speaker AI actually have a friend, she's a server at a restaurant and it's not a particularly high end restaurant.
Speaker AAnd that, I don't say that to be negative.
Speaker AShe makes probably as much money as I do serving tables four nights a week because she's been there for 20 some years and she has really loyal customers and she takes nothing home with her except for maybe like some bread and some meals, which sounds delightful because it's the best restaurant ever.
Speaker AShe has no baggage from her job whatsoever and she gets to go home and just exist as a person who does not have to worry about work outside of work.
Speaker AAnd that sounds freaking magical.
Speaker ASo the point being is that every job is a job that needs to be done.
Speaker AUnless you're like, if you're like laundering money for the mob, like, I'm not even saying that's not a job that needs to be done, but just like, keep that on the down low.
Speaker AI don't want you to go to jail and I don't want you to lose your legs or end up with concrete shoes like, don't do that.
Speaker AI can understand why that would be a little questionable.
Speaker ABut if you're doing a job, you're supporting yourself or partially supporting yourself, you're contributing, even if it's not the job you want to be doing, even if you don't consider it fulfilling work, that's still something you should be proud of.
Speaker ASo there's no shame in that.
Speaker ABut I also think, like, you don't have to answer questions and people don't get to be offended if you don't answer a question.
Speaker ASo if somebody asks you, like, what do you do for a living?
Speaker AYou can be vague about it and you can say like, oh, I work in hospitality.
Speaker AI'm just using the restaurant as an example.
Speaker AIt could be any number of things.
Speaker AWe actually had somebody apply very early on to work with us at lb.
Speaker AAnd by the time I went to hire her, she had actually found a really, really awesome job that was 100% in the field she wanted to be in.
Speaker AAnd so she took that job instead.
Speaker ABut she was like a definite hire for us.
Speaker ABut when I looked at her resume, she had had a job gap because she had a baby and she stayed home with her child for like three years.
Speaker AAnd so we talked about that.
Speaker AObviously I had my own maternity leaves and I understood that quite a bit.
Speaker AAnd she talked about how she had done some freelance work and some contract work over the couple years that had kept her busy and she really enjoyed it, but it just wasn't consistent enough.
Speaker AAnd she felt like maybe she wanted for her family something that was more reliable and consistent, even though she really enjoyed that.
Speaker AAnd I was like, makes perfect sense.
Speaker AI totally get it.
Speaker AI found out afterward that she was a phone sex operator.
Speaker ANot a problem for me.
Speaker AI don't care.
Speaker AShe answered the question.
Speaker AShe wasn't sure how I would react to it, which I get, I fully get.
Speaker AAnd so she just told me that she'd been doing some freelance work.
Speaker AIt was one off for clients.
Speaker AIt worked really well for her.
Speaker AIt was great for her schedule.
Speaker AIt was flexible, but it just wasn't the consistency that she needed it to be.
Speaker AAnd it was like, okay, cool, that makes sense.
Speaker AYou only ever have to answer questions as much as you are comfortable with.
Speaker AAnd also there are usually umbrella terms.
Speaker AI have a friend who's a truck driver.
Speaker AHe's a long distance truck driver.
Speaker AAnd if you ask him what he does, he says he's in logistics.
Speaker ANot because he doesn't like being a truck driver, but because when you tell somebody that you're a truck driver, you then inevitably have to answer like 47 questions about what it's like to be in a truck all the time?
Speaker AAnd do you have like a bunk in there?
Speaker AAnd like, oh, my God, how much gas does that use?
Speaker AAnd like, oh, my God, have you ever been in an accident?
Speaker AAnd what's the longest you've ever driven?
Speaker AWhat's it like going to a truck stop?
Speaker ADo they really have dentist office and truck stops?
Speaker AI mean, like this, like, it's like an inevitable barrage of questions from people when he just wants to, like, be like, can I please have a soda?
Speaker AAnd so he tells people that he's in logistics, and people are like, oh, interesting, cool.
Speaker AAnd they move on.
Speaker ASo you don't.
Speaker AYou only have to give people as much information as you're comfortable with.
Speaker AAnd there's probably a catch all term for what you do that is vague enough that people will be like, okay.
Speaker ABecause people probably care less than you think they do.
Speaker AThanks for being here, guys.
Speaker AHave a good day.
Speaker ALove you.
Speaker AMean it.
Speaker AYou want to know how well my brain is working?
Speaker AI just realized that I ordered food.
Speaker AI don't know how long it's been on my porch.
Speaker AThere's a bagel out there waiting for me, waiting for me.