Latest / The Trauma Therapist / Honoring Havi with Matt Goldstein, MD, PhD

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Honoring Havi with Matt Goldstein, MD, PhD · The Trauma Therapist

0:00
Speaker 1: Welcome to the Trauma Therapists podcast. My name is Gamiferson.
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Speaker 1: I interview incredible people who've dedicated their lives to helping
0:07
Speaker 1: those who've been impacted by trauma. A big thank you
0:11
Speaker 1: to our sponsors and our guests who are supporting this
0:14
Speaker 1: show five four, three, two and one. Our folks, welcome
0:20
Speaker 1: back to the podcast. Very excited to have us megat today.
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Speaker 1: Doctor Matt Goldstein, Matt, welcome, Thank you.
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Speaker 2: It's great to be here.
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Speaker 1: Doctor Matt is the CEO of Jscreen, a national nonprofit
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Speaker 1: making genetic testing accessible for cancer and reproductive health. A
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Speaker 1: Stanford trained mdphd who completed his clinical training at Harvard,
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Speaker 1: doctor Goldstein has led groundbreaking biotech adventures. His commitment to
0:47
Speaker 1: genetic awareness is deeply personal. After losing his daughter Hobby
0:51
Speaker 1: to Taysack's disease in twenty twenty one, he became a
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Speaker 1: passionate advocate for proactive testing and prevention through Jscreen, Doctor
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Speaker 1: Goldstein on hobbies legacy by helping families make informed health decisions,
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Speaker 1: most recently leading the record breaking Pink Power Hour event
1:07
Speaker 1: with NBC's Today's Show, Mountain Sunse Cancer Center and Myriad
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Speaker 1: Genetics All Right Matt. Obviously, just a little bit about
1:15
Speaker 1: you before we can go and share with our listeners
1:17
Speaker 1: where you're from originally and where you are currently.
1:21
Speaker 2: Yeah.
1:21
Speaker 3: I grew up outside of San Francisco and spent most
1:26
Speaker 3: of my formative years there. We bounced around a bit
1:30
Speaker 3: as I was growing up, but mostly consider myself a
1:34
Speaker 3: Northern California boy.
1:36
Speaker 2: And now I'm.
1:37
Speaker 3: Based in Boston, still struggling to get through the Winner,
1:40
Speaker 3: but it's been home for a number of years.
1:44
Speaker 1: Brutal, Those Winners are brutal. I spent some time there
1:47
Speaker 1: and it's just like Nope. In the summer too, it's crazy,
1:50
Speaker 1: it's too humid. Yeah, yeah, but anyway, look, thanks so
1:55
Speaker 1: much for being here. How does all this start for you?
2:02
Speaker 3: Well, I, you know, I grew up with this kitchen
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Speaker 3: table education of sort of a blend of medicine and science.
2:12
Speaker 3: My mom was a community veterinarian, took care of all
2:17
Speaker 3: the neighbor neighborhood dogs and cats, and you know, I
2:21
Speaker 3: grew up with people ringing our front door asking to
2:24
Speaker 3: see her. And that really, like was this beautiful example
2:29
Speaker 3: of the power of community and and the strength of
2:35
Speaker 3: the role of like a healthcare provider in that in
2:38
Speaker 3: that community, and my dad, who was a lawyer by training,
2:42
Speaker 3: was involved in biotech, and we actually moved to the
2:46
Speaker 3: Bay Area for a job that he had at a
2:50
Speaker 3: really cool company called Genentech back in the in the eighties,
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Speaker 3: and they were doing some really cutting edge science actually
2:58
Speaker 3: with genetics and cloning.
3:00
Speaker 2: And so I.
3:03
Speaker 3: Was exposed at an early age to this very cool blend,
3:06
Speaker 3: and I think that ultimately put me on the path
3:10
Speaker 3: to what I ultimately pursued my training in as an
3:14
Speaker 3: MD PhD to try and sort of blend both clinical
3:17
Speaker 3: medicine and science to develop new therapies and new treatments.
3:24
Speaker 3: And that was that was really where my where my
3:27
Speaker 3: passion and my interests lied. And and when I came
3:31
Speaker 3: to Boston for residency in internal medicine, the plan was
3:35
Speaker 3: to be a professor and uh to see patients and
3:38
Speaker 3: have a lab and try and develop new science and
3:43
Speaker 3: new treatments.
3:44
Speaker 2: I was really interested treatments for what.
3:47
Speaker 3: Yeah, I was really interested in cancer, and and my
3:50
Speaker 3: my PhD was in cancer immunotherapy, so using the immune
3:54
Speaker 3: system to fight cancer. Specifically, I worked on developing vaccine
4:00
Speaker 3: to try and stimulate immune responses against cancer as well
4:04
Speaker 3: as cell therapy, so using cells of the immune system
4:08
Speaker 3: as powerful anti cancer drugs themselves. And I was very
4:15
Speaker 3: fortunate and sort of serendipitously landed in a company creation
4:21
Speaker 3: venture capital firm during residency that was working on building
4:26
Speaker 3: a cancer vaccine company, and instead of moonlighting at the
4:30
Speaker 3: VA during residency, I moonlit with this venture capital firm
4:36
Speaker 3: called Third Rock Ventures, and we built a cancer vaccine company,
4:40
Speaker 3: which is just what my graduate work was on. And
4:45
Speaker 3: that company was called Neon Therapeutics, and we were developing
4:50
Speaker 3: personalized cancer vaccines around melanoma, bladder cancer, and lung cancer specifically,
4:58
Speaker 3: and we were using the genetics of a tumor, so
5:02
Speaker 3: tumors carry a lot of mutations and those mutations in
5:06
Speaker 3: some cases can be recognized by the immune system as
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Speaker 3: foreign the same way the immune system would recognize a
5:14
Speaker 3: virus or a bacteria. And we were working on a
5:18
Speaker 3: method to develop a custom vaccine tailored to each individual's
5:24
Speaker 3: tumor to try and stimulate an immune response. And it
5:29
Speaker 3: was incredible. It was a real culmination of what I
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Speaker 3: had studied as a graduate student. And we took that
5:36
Speaker 3: company all the way through clinical trials and ultimately took
5:40
Speaker 3: the company public and.
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Speaker 2: It was an amazing ride.
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Speaker 3: I was super fortunate to be there and got to
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Speaker 3: work with some incredible folks.
5:52
Speaker 1: What happens next?
5:54
Speaker 3: So what happened next was along the way, I met
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Speaker 3: a beautiful women and we got married. She is Jewish
6:04
Speaker 3: also and from outside of Philadelphia. And we got married
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Speaker 3: in twenty sixteen September fourth, which is an important day,
6:12
Speaker 3: as I'll explain. And about a year after we got married,
6:17
Speaker 3: we decided to start a family. And we both grew
6:21
Speaker 3: up like knowing that the Jewish community and the Jewish
6:27
Speaker 3: people in particular have higher risk of some inherited diseases,
6:31
Speaker 3: diseases like tay Sachs disease and cystic fibrosis, and a
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Speaker 3: handful of others, and so we both had preconception carrier
6:40
Speaker 3: screening before we started a family. Myra my wife was
6:45
Speaker 3: identified as a carrier for TAYSAS and I got tested
6:50
Speaker 3: subsequently and my test came back negative. So we went
6:55
Speaker 3: ahead and started trying to to start a family, and.
7:01
Speaker 1: Just start to interjecting, just as an aside, explain what
7:06
Speaker 1: tax is.
7:07
Speaker 3: Yeah, TASAX is an inherited rare disease. It only affects
7:13
Speaker 3: about twenty there's basically twenty kids roughly born in the
7:18
Speaker 3: United States with taysas every year. It is a neuro
7:23
Speaker 3: degenerative disease. It's it's fatal, and it comes in a
7:29
Speaker 3: few different flavors. There's an infantile form, a juvenile form,
7:33
Speaker 3: and what they call a late onset form that affects
7:37
Speaker 3: older individuals. But it's it's very similar to ALS or
7:42
Speaker 3: lou Gerrigg's disease, where you see progressive loss of many functions,
7:51
Speaker 3: the ability to eat, the ability to see. Ultimately motor
7:56
Speaker 3: functions are lost. And in the infantile form, kids who
8:04
Speaker 3: are diagnosed usually any time between six and six months
8:10
Speaker 3: of age and two years, you know that they will
8:14
Speaker 3: live for a year or two without any intervention and
8:19
Speaker 3: ultimately pass away from the disease. So it tase X
8:23
Speaker 3: is one of many rare diseases that are just these
8:27
Speaker 3: truly devastating inherited diseases, and we fortunately with science, have
8:34
Speaker 3: the ability to screen potential parents, you know, prospective parents,
8:42
Speaker 3: to find out whether those parents are both carriers of
8:46
Speaker 3: mutations that may put a child at risk. And that
8:51
Speaker 3: is the type of screening it's called carrier screening. Reproductive
8:55
Speaker 3: carrier screening. That is the type of screening that Myra
8:59
Speaker 3: and I had when we were at the beginning of
9:02
Speaker 3: our family planning journey.
9:06
Speaker 1: Go ahead, so she gets tested, comes back positive, correct,
9:11
Speaker 1: comes back negative, correct, start trying.
9:14
Speaker 3: To So we decided to start start trying, and she
9:19
Speaker 3: gets pregnant and gives birth to our first daughter, Hovey,
9:24
Speaker 3: who was born on our wedding anniversary September fourth, twenty eighteen,
9:28
Speaker 3: two years to the day. And Hob was beautiful and strong.
9:35
Speaker 3: We were first time parents. It was incredible. Our lives
9:39
Speaker 3: were changed forever, as you know all parents know and experience,
9:44
Speaker 3: and Hob.
9:46
Speaker 2: Developed normally for about a year.
9:50
Speaker 3: She was meeting milestones and progressing, and then at her
9:54
Speaker 3: one year appointment with her pediatrician, there were a few
9:58
Speaker 3: milestones that she had missed and we were given what
10:02
Speaker 3: is called the developmental delay diagnosis. And our pediatricians said,
10:09
Speaker 3: you know, I'm not worried, She's gonna be fine. We
10:12
Speaker 3: have lots of interventions for kids who are a little behind,
10:19
Speaker 3: occupational therapy, physical therapy, early intervention programs in Massachusetts are fantastic.
10:26
Speaker 2: So we like the sort of type A parents that
10:30
Speaker 2: we will.
10:31
Speaker 1: Are there was you couldn't do a test for tasas.
10:36
Speaker 3: You know at that you can you can at that
10:39
Speaker 3: time because we had been carrier screened and Myra was
10:46
Speaker 3: positive and I was told that I was negative. TASACS
10:49
Speaker 3: wasn't was, you know, as far as anything on the
10:53
Speaker 3: differential of what was wrong. And it really wasn't until
11:00
Speaker 3: after Thanksgiving that, you know, we saw We saw the
11:03
Speaker 3: pediatrician in September, and we put have in occupational therapy
11:10
Speaker 3: and physical therapy. We saw a bunch of other physician types, neurology, orthopedics,
11:16
Speaker 3: developmental peds, and you.
11:20
Speaker 2: Know, we sort of joke around that have fooled all
11:22
Speaker 2: of them.
11:23
Speaker 3: She had this incredible laugh and that these beautiful bright
11:27
Speaker 3: eyes and was super engaging and all of these physicians
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Speaker 3: saw her and examined her and said, you know, she's
11:34
Speaker 3: gonna be fine.
11:35
Speaker 2: We're not worried. We're not worried.
11:36
Speaker 3: And it wasn't until after Thanksgiving, when she really wasn't
11:40
Speaker 3: making any progress that we got increasingly concerned that we
11:45
Speaker 3: were missing something.
11:46
Speaker 2: And we ended up in the.
11:50
Speaker 3: Office of a pediatric neurogeneticist at Boston Children's and he
11:56
Speaker 3: examined Hove. He sat down on the floor with her
12:00
Speaker 3: and put some toys out, and I was sitting on
12:04
Speaker 3: the other side of the room and I unzipped my
12:06
Speaker 3: jacket and hob jumped. She sort of startled, and he
12:11
Speaker 3: turned and said does she do that a lot? And
12:14
Speaker 3: we said, yeah, you know occasionally. Our pediatrician told us
12:18
Speaker 3: that she has sensitive hearing, and he went on with
12:22
Speaker 3: his exam and then turned to us and said, have
12:26
Speaker 3: you been tested for tase x? And we nearly laughed
12:30
Speaker 3: out loud because of our carrier screening results, and he said,
12:35
Speaker 3: you know, I want to do some confirmatory testing. That
12:39
Speaker 3: startle response that she has is characteristic of tas X,
12:44
Speaker 3: and I'm worried that there may be something more significant
12:49
Speaker 3: going on here. And so a few days later we
12:53
Speaker 3: had a series of blood tests and an MRI. I
13:00
Speaker 3: came back to the clinic to get some of these results,
13:05
Speaker 3: and I went to the neurology floor. The nurse called
13:11
Speaker 3: doctor sid Is, the physician who we saw. She called him.
13:16
Speaker 3: He came to the front desk and said, can you
13:18
Speaker 3: please come to my office and I sat down in
13:21
Speaker 3: a chair. He turned his computer screen to me. It
13:25
Speaker 3: was filled with MRI images of Hobby's brain and he pointed,
13:30
Speaker 3: he said, here, hear, hear these lesions are characteristic of
13:33
Speaker 3: tas acts. He said, I'm so sorry, Hobby has tas
13:37
Speaker 3: acts disease. And I was devastated. I was shocked, and
13:47
Speaker 3: my world, obviously in that moment, shattered.
13:51
Speaker 2: Somehow.
13:52
Speaker 3: I made it home and I walked upstairs into our bedroom.
13:55
Speaker 3: Myra was on the phone and she dropped it when
13:58
Speaker 3: she saw my face. I sat down on the bed
14:01
Speaker 3: and I told her what doctor Sid had shared with me,
14:04
Speaker 3: and she screamed. She screamed, She's going to die, over
14:08
Speaker 3: and over and over again. And you know, at that moment,
14:14
Speaker 3: our world was turned completely upside down. And Myra was
14:19
Speaker 3: actually eleven weeks pregnant with our second child, and so
14:23
Speaker 3: that next day we were in high risk go B.
14:27
Speaker 3: Myra was getting a CVS. It's a choreonic Villis sampling.
14:31
Speaker 3: It's kind of like an amniocentisis to test whether the
14:34
Speaker 3: fetus was affected with tasas. You know, we had sort
14:39
Speaker 3: of gotten cleared from a genetic perspective and so got
14:42
Speaker 3: pregnant again. KaiA is our second child. She is a
14:49
Speaker 3: carrier for TASAX, and she and Hovey overlapped for six months.
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Speaker 3: She was born in June of twenty twenty and Hovey
15:00
Speaker 3: died in my wife's arms in our bed January of
15:04
Speaker 3: twenty twenty one. And what we subsequently learned, Guy, was
15:10
Speaker 3: that the physician who ordered my test, who ordered my
15:14
Speaker 3: carrier screen, ordered the wrong test and misreported my carrier status,
15:19
Speaker 3: which is, you know, inconceivable in this day and age,
15:23
Speaker 3: especially in a city like Boston, and so in fact
15:29
Speaker 3: I am a carrier and that that experience and that
15:35
Speaker 3: realization of what happened is what ultimately led me into
15:40
Speaker 3: this work that I do now with Jscreen.
15:46
Speaker 1: My condolences to you, thank you, And I mean there's
15:50
Speaker 1: there are obviously no words I appreciate sharing that they
15:58
Speaker 1: ordered the wrong test. Yeah, I mean I guess that
16:04
Speaker 1: that's kind of a whole other avenue of thought and feelings.
16:13
Speaker 1: How do you How does what do you do next?
16:17
Speaker 1: In terms of you said that was the entree into jscreen?
16:23
Speaker 1: What do your thinks? What are your thoughts? How does
16:25
Speaker 1: that come about for you?
16:26
Speaker 2: Yeah?
16:28
Speaker 3: You know, I I spend a lot of time trying
16:32
Speaker 3: to understand how this mistake could have been made, and
16:39
Speaker 3: what I learned relatively quickly, is that our medical system
16:45
Speaker 3: is woefully.
16:50
Speaker 2: Unprepared, under educated, and.
16:53
Speaker 3: Underresourced to really provide high quality genetic care. And genetics
17:02
Speaker 3: is complicated, you know, it is a rapidly evolving field.
17:08
Speaker 3: Our knowledge is accelerating tremendously, the technology is accelerating tremendously.
17:16
Speaker 3: It is complicated, and we get as physicians, we get
17:21
Speaker 3: very little training in genetics, yet it is one of
17:27
Speaker 3: the most powerful tools that we have. I often say
17:31
Speaker 3: that second to vaccines, preventive genetics the ability to screen
17:38
Speaker 3: someone's genome for mutations that put them at risk for disease.
17:44
Speaker 2: That is second to.
17:46
Speaker 3: Vaccines, the most powerful medical tool that we have because
17:51
Speaker 3: we can prevent diseases from happening entirely. And I will
17:57
Speaker 3: tell you We've gone on to have two additional children,
18:01
Speaker 3: two boys, and we've used.
18:03
Speaker 2: IVF for both of those kids.
18:06
Speaker 3: And we've used IVF because there is a technology available
18:11
Speaker 3: called pre implementation genetic testing where you can actually test
18:16
Speaker 3: the embryo to see whether it carries the mutation that
18:22
Speaker 3: or the mutations that would put that future child at
18:28
Speaker 3: risk for a disease. And Ezra's are our second uh
18:34
Speaker 3: He's Ezra's are one of the two boys.
18:38
Speaker 2: He was born.
18:39
Speaker 3: After Kaya and he doesn't carry either mutation, So Tasas
18:44
Speaker 3: is gone from his lineage. We've eliminated Tasax from his
18:49
Speaker 3: future lineage, which is just incredible. That kind of capability
18:54
Speaker 3: in medicine is it is so powerful and so profound.
19:00
Speaker 3: And I think what really shocked me as I dug
19:04
Speaker 3: into how the mistake was made, was just how little
19:11
Speaker 3: we use this technology in medicine. We you know, how
19:15
Speaker 3: little we use it in primary care and obg yn
19:18
Speaker 3: and pediatrics, and yet it is so so profoundly impactful,
19:25
Speaker 3: and I just couldn't get my hands around that. And ultimately,
19:30
Speaker 3: in the context of that exploration, I found Jscreen, which
19:36
Speaker 3: was this amazing little organization that had been around for
19:39
Speaker 3: over a decade and had started at Emory University to
19:44
Speaker 3: essentially provide genetic care, navigation, education, access to testing, and
19:51
Speaker 3: really high touch, high quality support all the way through
19:54
Speaker 3: the process, and to do that on a national scale,
19:58
Speaker 3: to essentially provide tele genetics on a national scale. And
20:04
Speaker 3: I met the executive director and founder, a fantastic woman
20:08
Speaker 3: named Karen Greenside, and I said to her, how come
20:13
Speaker 3: I didn't know about this like, how come this isn't everywhere?
20:16
Speaker 3: You know, had I known about Jayscreen, Hove would still
20:19
Speaker 3: be here. And she said, you know, we've been trying
20:22
Speaker 3: to grow and scale and you know, will you help us?
20:25
Speaker 3: And ultimately I ended up spending about a year informally
20:30
Speaker 3: advising them and then had an opportunity to come on
20:34
Speaker 3: full time in the fall of twenty twenty three. And
20:39
Speaker 3: it was the easiest decision I've ever made professionally. I
20:44
Speaker 3: was at a small venture capital you know, company building
20:48
Speaker 3: studio with some friends from the early Third Rock days,
20:52
Speaker 3: and I called him the next day and said, you know,
20:55
Speaker 3: I'm going to go do this thing because it is
20:58
Speaker 3: really it is really work that is at the intersection
21:01
Speaker 3: of my personal and my professional life in such an
21:05
Speaker 3: incredible way. And it's a way that I get to
21:09
Speaker 3: be Hobb's parent, you know, It's a way I get
21:11
Speaker 3: to be her dad in telling her story and bringing
21:16
Speaker 3: her into these spaces as inspiration and education.
21:22
Speaker 1: So for our listeners, who is Jscreen for? Is it
21:28
Speaker 1: for anyone who's having a kid?
21:31
Speaker 3: Yeah, you know, Jayscreen started off focused on providing this
21:38
Speaker 3: type of service, largely to the Jewish community, because that
21:42
Speaker 3: is a population that is at higher risk.
21:46
Speaker 2: But you know, the truth is guy that.
21:49
Speaker 3: Every population has its genetic risks, and there are many, many,
21:56
Speaker 3: many examples of diseases that run in certain families, certain communities,
22:03
Speaker 3: certain ethnicities that we can identify through carrier screening. And
22:09
Speaker 3: so while jscreen has focused historically on the Jewish community,
22:14
Speaker 3: I really firmly believe that this is something for everyone everywhere,
22:19
Speaker 3: and ultimately that is what we want to become as
22:22
Speaker 3: an organization. We want to be the go to resource
22:26
Speaker 3: for preventive genetics for everyone, everywhere, and we want to
22:32
Speaker 3: provide a world class experience, whether that is for reproductive
22:37
Speaker 3: carrier screening if you're thinking about starting a family, whether
22:41
Speaker 3: it's for hereditary cancer testing if you are worried about
22:45
Speaker 3: a family history of cancer or your own risk of cancer.
22:50
Speaker 3: And increasingly many other disease areas are becoming available for
22:58
Speaker 3: the power full utilization of preventive genetic screening. Hereditary cardiovascular
23:05
Speaker 3: disease is an area where our knowledge is expanding. Autoimmune disease, autism,
23:11
Speaker 3: neurologic disease. We are making incredible strides in our knowledge
23:17
Speaker 3: and our scientific understanding so that this type of technology
23:22
Speaker 3: and capability is something that everyone should have access to.
23:27
Speaker 1: As it is now, is jscreen primarily for the Jewish community.
23:33
Speaker 3: You know, jscreen is for everyone. We primarily serve like
23:38
Speaker 3: the majority of people who come through Jscreen are Jewish.
23:43
Speaker 3: That is, that's because that's where we've built our brand
23:46
Speaker 3: and you know, where we have name recognition. But this
23:51
Speaker 3: is really a service and a tool that is available
23:54
Speaker 3: for everyone.
23:56
Speaker 1: So in order for people to approach you guys, they
24:01
Speaker 1: have to have some knowledge that were some thought that
24:03
Speaker 1: something is going on or.
24:07
Speaker 2: It's a good question, you know.
24:09
Speaker 3: I I think that this if we're talking about the
24:13
Speaker 3: reproductive carrier screening space as an example, I think that
24:18
Speaker 3: that is the type of test that really anyone who
24:24
Speaker 3: is in the reproductive age window should consider doing, and
24:32
Speaker 3: whether they are an individual or a couple, it it
24:36
Speaker 3: for me, it feels like something that should just be
24:39
Speaker 3: part of our sort of routine preventive health knowledge base
24:47
Speaker 3: and uh and obviously especially for couples who are thinking
24:51
Speaker 3: about having kids. And I think that in in areas
24:57
Speaker 3: like hereditary cancer, obviously individuals with family history who who
25:04
Speaker 3: you know, have many relatives or relatives who have been
25:08
Speaker 3: affected by cancer undergoing hereditary cancer screening in those in
25:14
Speaker 3: those situations and scenarios is very important. But you know,
25:18
Speaker 3: we've done studies to show that there are plenty of
25:22
Speaker 3: individuals who have no family history or who don't know
25:26
Speaker 3: their family history, or that they they had family members
25:30
Speaker 3: who were affected by cancer, but those family members didn't
25:33
Speaker 3: talk about it. And so doing hereditary cancer screening to
25:38
Speaker 3: understand what your risk is can be life saving. It
25:41
Speaker 3: can be profoundly life saving. And I think that's increasingly
25:45
Speaker 3: important in this day and age where we're seeing an
25:50
Speaker 3: epidemic of cancer in younger people and and in in
25:58
Speaker 3: four types of cancer, that we can do very meaningful
26:01
Speaker 3: and important things to screen for and prevent or diagnose
26:06
Speaker 3: very early and and ultimately give those individuals a chance
26:11
Speaker 3: at a cure.
26:13
Speaker 1: In the typical process of uh, you know when you
26:19
Speaker 1: go see it. When when I've had two kids and
26:22
Speaker 1: remember going back and back and back for these for
26:26
Speaker 1: these office visits, I mean, obviously they're screening for some something.
26:31
Speaker 1: Blood tests are you know, are being done is what
26:36
Speaker 1: we're talking about here. What you're talking about here with
26:38
Speaker 1: genetic testing commonly seen as an extreme measure, an extreme test,
26:45
Speaker 1: is that the.
26:45
Speaker 3: Problem I don't think so, you know, I think the
26:49
Speaker 3: state of things right now is that, uh, there are
26:55
Speaker 3: a number of diseases, a number of I will say
27:00
Speaker 3: more common of the rare, but more common of the
27:04
Speaker 3: rare diseases that are typically screened for or should be
27:09
Speaker 3: typically screened for in all individuals who are thinking about
27:14
Speaker 3: starting a family, and all individuals who show up to
27:18
Speaker 3: an obg y N with an early pregnancy. We we
27:23
Speaker 3: typically in the field, we'll see you know, three or
27:27
Speaker 3: four kind of core diseases, including diseases like cystic fibrosis
27:31
Speaker 3: that are tested for early on. So there is a
27:36
Speaker 3: small amount of utilization of genetic testing as part of
27:40
Speaker 3: routine clinical care, but it is just decades behind where
27:45
Speaker 3: it should be and where it could be based on
27:48
Speaker 3: our technological advances and our scientific understanding, you know. As
27:54
Speaker 3: as a point of contrast, j the panel that jascreen
27:58
Speaker 3: offers right now tests for over two hundred and fifty
28:01
Speaker 3: different diseases, and there are panels available out there that
28:06
Speaker 3: test for seven hundred diseases. So the knowledge and the
28:12
Speaker 3: capability that we have is really expansive and and we
28:17
Speaker 3: largely don't use that in clinical medicine right now.
28:21
Speaker 1: Are there other countries who are doing this work, who
28:25
Speaker 1: are more advanced? Why why are we so behind? See,
28:30
Speaker 1: you know we hear about this all the time. Oh
28:33
Speaker 1: here system is so behind?
28:35
Speaker 3: Yeah, I think, I mean there are countries that that
28:40
Speaker 3: are more advanced. Israel actually does a really fantastic job,
28:46
Speaker 3: particularly in the reproductive carrier space. You know, that is
28:49
Speaker 3: obviously because the population there is very small and relatively homogeneous.
28:57
Speaker 3: We've actually also seen a number of other countries in
29:02
Speaker 3: the Middle East making big strides to bring really advanced
29:08
Speaker 3: genetics into their routine care and really almost like leapfrogging
29:13
Speaker 3: what we do in the United States routinely. So there
29:17
Speaker 3: are plenty of countries that are very, very advanced and
29:21
Speaker 3: well ahead of where we are. I think ultimately, you know,
29:25
Speaker 3: maybe the simple explanation for you know, why we're quote
29:28
Speaker 3: so behind is is because our healthcare system is not
29:32
Speaker 3: a healthcare system. It's a disease care system, and we
29:36
Speaker 3: are focused on treatments and on therapies, and those are important.
29:44
Speaker 3: Those are profoundly important. And you know, I spent the
29:49
Speaker 3: overwhelming majority of my career trying to develop medicines and
29:53
Speaker 3: that is an amazing and critical thing, but we sort
29:58
Speaker 3: of ignore preventive health in the United States. We ignore
30:02
Speaker 3: the things that could be routine, that could save lives
30:08
Speaker 3: in in tremendously meaningful ways. And you know that is
30:12
Speaker 3: that is for economic reasons. You know, that's not where
30:16
Speaker 3: the money is uh in some ways. And and I
30:20
Speaker 3: think it's also for philosophical reasons, Like we love the
30:23
Speaker 3: story of a heroic medicine coming in and saving someone's life.
30:29
Speaker 3: It is dramatic, it is compelling, it is inspiring, and
30:35
Speaker 3: and doing things that are more preventive. You know, putting
30:38
Speaker 3: your seatbelt on, as an example, doesn't doesn't quite get
30:43
Speaker 3: the same fanfare that that you know, the the hero
30:48
Speaker 3: therapeutic story does. And and I think that's a that's
30:51
Speaker 3: like an American cultural phenomenon that is part of it
30:55
Speaker 3: as well.
30:56
Speaker 1: So as we kind of wind down here for listeners,
31:00
Speaker 1: who is jayscreen for who should be coming to you guys?
31:05
Speaker 3: So I think anyone who is eighteen and older who
31:11
Speaker 3: is thinking about starting a family, anyone who has a
31:17
Speaker 3: family history of cancer or concerns about a potential family
31:22
Speaker 3: history of cancer, I think we are a great resource
31:28
Speaker 3: for them to get educated. We have an incredible team
31:32
Speaker 3: of genetic counselors and educating professionals who can assist individuals
31:39
Speaker 3: in understanding what their genetic risks are and what tests
31:45
Speaker 3: are appropriate for them and then should they be interested
31:49
Speaker 3: in moving forward. We have a really simple and easy
31:53
Speaker 3: process to get access to those tests. They are all
31:58
Speaker 3: home based, so you literally get kit in the mail,
32:01
Speaker 3: you spit in a tube and send it back. It's
32:03
Speaker 3: very very simple, and then our team of genetic counselors
32:08
Speaker 3: reviews every result that comes through and helps to support
32:13
Speaker 3: patients and families through the next steps if they need
32:18
Speaker 3: them and what those results mean uh and and what.
32:21
Speaker 2: They should be doing.
32:23
Speaker 3: So it is really a comprehensive end to end service
32:28
Speaker 3: that we offer to ensure that people are getting the
32:31
Speaker 3: right test in the right way at the right time
32:33
Speaker 3: for themselves or their families, and they can they can
32:38
Speaker 3: find all of that information and more at jscreen dot org.
32:44
Speaker 1: Okay, we'll have all that linked up here the show
32:47
Speaker 1: notes page at the Trauma Therapist podcast dot combat Heavy
32:56
Speaker 1: and I so appreciate you coming on here and being
32:59
Speaker 1: willing to share your story. But you can feel the
33:06
Speaker 1: gravity of the work you're doing, and you're calling to
33:10
Speaker 1: do it and the importance of it, and I appreciate
33:12
Speaker 1: you coming on here and sharing that.
33:14
Speaker 3: Yeah, it's a pleasure. It's as I said, it's a
33:19
Speaker 3: way for me to put hob out into the world.
33:22
Speaker 3: And for that, you know, personally, I am super grateful
33:25
Speaker 3: and I appreciate the opportunity and the audience to make
33:30
Speaker 3: this information known, you know, whether it's through jscreen or
33:33
Speaker 3: through your own physician.
33:35
Speaker 2: I think this is a really really important.
33:37
Speaker 3: Tool and can powerfully impact your own health and the
33:41
Speaker 3: health of your family, and that is ultimately what we
33:46
Speaker 3: want to try and to try and support. So thank
33:51
Speaker 3: you so much for the time and the venue.
33:53
Speaker 1: You're welcome. We'll be in touch, all.
33:55
Speaker 2: Right, all right, take care, Yeah you too, take care.
34:00
Speaker 1: After good of the tooted, the open sile, the retament