Good evening and welcome to the Second District Health and Wellness webinar I am Dr Keith boyin a retired pediatrician and trained internist and I’ll be your moderator for the evening I hope everyone’s had a wonderful Thanksgiving I know I did and ready to get some more information uh about what
We’re doing but first let me just say a few things things that the opinions and and and and ideas presented here are those of the people that give them individual Brothers Andor presenters and do not represent the Omega sidei Fraternity Incorporated tonight we have a special Focus for you guys we have a
Topic that everybody’s heard about and probably don’t know really a whole lot about or think they know a lot about it so we’re gonna do a special thing tonight for you uh but before we get into that I’m going to introduce my brothers who are here with me this
Evening and our chairman I’ll introduce him first and then I’ll follow the rest of the brothers so with that I’m going to have you turn it over to Dr Phillips Dr Phillips will you come on and give us your uh opening statements please good evening 78 how you doing my brother
Rough day today I had to hustle home from the office got in in the just a slick of time just got in but um I’m glad to be here because again you know as we’ve been doing every month continuing to talk about preventing health issues that unfortunately when
They’re not addressed in a preventive way they cost us a whole lot more as far as how it impacts us physically and it can impact our lives one of the conditions that can be extremely frustrating is the condition called epilepsy and with this month being epil epilepsy awareness month we wanted to
Talk about a condition that can be very difficult to identify but also extremely difficult to find the right therapy so I am excited for our conversation tonight we’ve got some additional features to our program tonight that I think are going to be extremely interesting to our audience so
Again bro I’m glad to be here and I’m glad to talk and I’m glad to be here with you and the rest of the brothers thank you Dr Phillips okay let’s have Dr Isabelle 95 brother Isabelle will you brother Dr Isabel will you give us your opening statement please
Good evening um once again um happy to be here uh board certified Internal Medicine Primary Care as well as uh patient care and HIV Primary Care uh epilepsy uh awareness month at times a lot of uh patients or people aren’t aware the signs or S of of a a
Seizure um or a stigma with it and I’d like to share um my side regarding uh information on epilepsy thank you thank you thank you Dr isv and last but not least we have brother 96 brother Dr Christopher Plumber would you come on and give us your opening statement
Please all good evening everybody my name is Dr Christopher Plumber I’m board certified in OBGYN and I specialize in Maternal Fetal Medicine highrisk pregnancy it’s great again to be with the brothers and and talking about um certain situations that affect our community I just want to um you know for
People to be aware if you do happen to have seizure disorder or epilepsy if it’s well controlled pregnancy usually can be very uncomplicated but we’ll we’ll dive in that a little bit more in our conversation today thank you so much Dr plumbus so as uh uh I think Dr isbel and Dr Phillip
Said this is National epilepsy awareness month or neem as the epilepsy epilepsy Society calls it and so they’re they’re launching a campaign to to reduce the stigma associated with epilepsy because I’m sure you know someone that uh has probably has a seizure disorder epilepsy and somebody family might say they have
Fits so that’s the thing we don’t want the people to to understand I mean we want people to understand night that they’re not having fits it’s a medical condition neurological disorder and or a an associated with an uh another Disorder so first we got to talk about
What is the difference between a seizure and epilepsy a lot of has defin it kind of set the tone here for Force first of all a seizure is a single isolated event whereas epilepsy is a Continuum a repetition of seizures so that’s what the difference is between epilepsy
Excuse me m seizure and epilepsy so I want people to understand that we may use the terms interchangeably tonight but epilepsy is a condition of continued seizure so I want you to understand that so first of all seizures come in all sizes and shape so uh and and colors and
Magnitudes if you will so I’m just going to have Dr Phillips give his experience what he’s seen over the years with with seizure and epilepsy well the first thing I would say is as we look at how we Define seizures one of the other aspects of
Epilepsy as far as the definition is the occurrence of two or more seizures that occur over 24 hours apart now again as you mentioned a seizure is a presentation or a symptom it does not necessarily you know um mean that a person has a chronic lifelong condition
I’ll share a personal story I can remember with my youngest son I was up late and he was in bed and I went laid next to him he was two years old at the time and what happened was he woke me up tapping he was tapping me and I didn’t
Know what it was I woke up he was in the midst of a fullblown seizure now the backstory was leading up to that he would was having fevers and wasn’t feeling well ended up um he was diagnosed after we had taken him to the hospital with a febal seizure which as
You mentioned there can be conditions that can contribute to a person having a seizure repode but that does not mean that you have to have a lifelong condition for example my son after that one seizure which was related to his air infection once the air infection was
Treated he never had a problem with with seizures ever again but again it’s very important to understand that because number one if you are having recurrent seizures there are medications that can be utilized to treat that and that’s with a person who might have the condition of epilepsy but if it’s the
Symptom or condition of one having a seizure that needs to be addressed as far as finding out what contributed to it in my case it was a fever related to an infection in other situations I’ve seen some of my diabetic patients that have been taken to the hospital with
Seizure like activity because they had low blood sugar so there are a variety of things that can contribute and cause this issue so I think that this is an important conversation because this is one of those situations that people can getting caught up in a gray area you
Know I went to the doctor he says I don’t have epilepsy but what do I do I you know I’m not sure if I want to take medicine but what can I do the seizures don’t occur that frequently and that’s another you know aspect of it and I
Think the the biggest thing that I would also like to communicate is what happens when a person has a seizure or has epilepsy their brain gets a storm or flooded with electrical impulses and these electrical impulses can result in the seizure activity now the reason I mentioned this specifically because as
We all know the brain accomplishes and takes care of multiple functions of ours so wherever that electrical storm is could also dictate the type of symptoms that would be part of the seizure that a person might have you have individuals that don’t have any jerky movements and just
Stare into space that is a certain type of seizure as well but again I you know I’ll Year to my other colleagues but seizures are something that is extremely important and I’m glad we’re having this conversation thank you Dr Co you brought you brought two two important points I
Want to stress them before I go to our next uh next brother here one you you had a condition Associated uh causing your son’s Fe called febal seizures they can be simple or it can be complex febal seizures and it’s most frightening that’s one of the probably most
Frightening types of things I’ve I experienced in my years of Pediatrics my child has a fever and then the parents um uh don’t know what to do or they frighten it and they don’t know how to take care of it they don’t how to manage it when they come home and the biggest
Fear will this lead to a lifelong disorder and you’ve so eloquently said it didn’t in your son’s case now some of these kids can have a focus you know that that was unknown and maybe turned on later uh and still have fbow seizures you know a seizure could be something
Simple for a kid might got you know wrapped in the head he might fall out and have you tonic Clinic like movements which is seizure like might not necessarily be a seizure so those important things that we talk about tonight I want our guest to understand that these are things that may be
Another medical condition or they may be signs of an impending lifelong uh problem so I know I know you see a variety of patients uh Dr Isabelle I mean you take care of the HIV people as well so I’m sure you’ve seen all kinds of different types of seizures in your
Adult practice tell us a little bit about your experience with it my experience uh with seizure I start in in the office uh sometimes a a patient may uh not know that they have a seizure they may come in they may have a what we call syn episode they may pass
Out or they had an uncontrolled movement or they have a loss of brief memory um or they may wake up and they notice they have a a bloody tongue or they may wet the bed or it’s noticed by some other uh family member uh so uh they come in or they’re
Not feeling well for a little bit so then they come to the office we do a history uh regarding um have them try to the best that they can describe their symptoms or a family member or if there’s any family his is always important of any seizure diet diabetes uh
Cancers uh or um are they on any medications uh have they also uh some people may get offended but you always have to ask have have they do they drink alcohol or have they any illicit drug use because those are some of uh uh could we call provoked
Seizures uh non a provoked epileptic is um is a serious where thing where somebody more than likely uh down the road cannot drive but if we find a provoked seizure uh doesn’t mean necessarily that they can’t depending on what state they in they can’t can’t drive for six months
To a year so uh when I say provoke seizures or something that can lower the threshold we’re talking about alcohol uh we’re talking about illicit drugs like cocaine opioid withdrawal or sometimes benzo with withraw um dehydration um or being uh sick infection like um HIV sometimes that you you can get um
Menitis you can get uh other types of brain infection you can get a parasite things that could cause seizure or sometimes uh unfortunately you it could be a cancer uh so these are some of the the provoke things so then you would want to do like
A a workup you would do a blood work uh to make sure things like they’re not a diabetic or they didn’t have like some type of hypoglycemic episode uh you would want to uh do your physical exam you would do a a CAT scan of the brain
Or MRI of the brain uh to make sure there’s no pathology like a a a mass or a tumor um or that they uh didn’t have any stroke because um some a lot age 35 and up sometimes it could be a high risk if somebody could have a stroke and that
Can also cause a a seizure or if they have some type of artery and or vein Mal formation that can also cause a seizure so those are things that we look for then we get what we call a EEG it it checks the uh waves of electrical waves
Of the brain to see if there’s any spikes or any evidence uh signs of uh seizure activity uh there’s even more like focal EEG or special MRIs or Focus MRIs that can pinpoint seizures also so these are uh some of the things we do for a workup of
Seizures um if somebody has one one Siege it doesn’t necessarily mean uh that you would need to be on medication but unfortunately if you have multiple then there’s may be treatments there out there medications and there’s other uh treatments also thank you thank you thank you Dr
You you rais uh a very important point in workup because once you know once you have the work up done then you got to figure out the right person to direct them to for the treatment and and and management of that particular disease but then we have a special case though I
Mean what do we have like during pregnancy Dr Plum you know we have women that are pregnant you have a two-fold situation here you have to take care of the mother and you have to worry about the immediate period when you call me
And say Dr boyin I got a I got a 40 uh 40-month you know full-term baby here is having seizures what’s going on and you get you tell me what the mother has seizures so that’s a different different approach for me but talk about seizures and pregnancy and seizures in in
Gynecology and period if you will all right well the most important thing I want to emphasize is when a woman is pregnant and she has a seizure um the most important thing is to go to a hospital and get evaluated because the most common seizure during pregnancy is
What we call an eclamptic seizure and a clamps is um seen when a woman has elevated blood pressure and she might not even notice it and maybe headache but on top of that when you have eclampsia it’s a you have a seizure and that can cause an increased risk for the
Mother to die and also the baby to die too so that has to be taken very seriously and get evaluated in the hospital because the only cure for preeclamsia is um delivery but if it’s not recognized early you mother can lose her life and also the baby can also lose
Her life now um if a mother has a history of epilepsy and is um on medication generally most of the newer medications that she can stay on um usually kepra or lamal um are usually the medications that they can stay on during pregnancy is well tolerated in pregnancy um it doesn’t
Increase the risk of Mal formations um then that one if they’re well very well controlled on that um then usually they’ll have a very successful pregnancy without any issues um also those medications can also be used when you’re not pregnant and on and on birth control because some of the old older seizure
Medications when they used to take them um used to reduce the efficacy of birth control and they used to become pregnant and the older medications like fenin and um carbom aspine can cause fetal malformations so if you are pregnant and you have epilepsy and you’re um considering about getting pregnant one
Consult an OBGYN or Maternal Fetal Medicine doctor um two um have them change the medication to at least one try to use one medication if possible I but usually the ones that are usually more well tolerated in pregnancy thank you Dr Dr Phil did you have something you wanted to add to that
I you messag me no no no what I want you know just to add on to the conversation I think Dr Isabelle and Dr plumber touched on it is how you have to move a little differently if you do have uh epilepsy or a seizure disorder some activities driving as he was stated
There’s some legal rules in place to put limits on that so you want to consult that but there are also some other activities you know again you know going swimming by yourself scuba diving uh you know things like that you got to be mindful of I have a patient who has
Epilepsy and she is not allowed to cook in her kitchen because of concern that she could have an episode while she’s cooking and that could lead to her injuring herself destroying her home ETA ET so again you know I think I’m going to emphasize how important it is if this
Is the case touching with your doctor so you can find out you know what type of activities are safe for you to do and what type of activities that you need to avoid or take precautions with thank you yeah yeah that’s very very important because in my in my days
When I practiced internal medicine and Pediatrics I unfortunately had a mother that I took care of who uh who had a seizure disorder and and Dr Plum alluded to a little bit in his uh uh uh part he talked about one of the medicine location she was on was called Danton
And then we have something in pediatric called fetal uh hyoin syndrome they have different type of anomalies this baby in that what we had to call a two vessel cord uh didn’t have the full three vessel cord so that was the first infestation and she had her nails were
Were gone but the unfortunate part of it was that the mother devels called Help syndrome I get into that here because it’s too complex for this particular audience here but but I so I took I helped manage her help syndrome and I took care of the baby because the baby
Was I think was born around 37 38 weeks uh I believe it was uh Dr plumber but anyway the unfortunate situation this mother talk Dr Phil talked about consequences uh the baby was a little bit older I don’t remember how old the baby was but the mother was taking a
Bath and unfortunately had a seizing the bath and drown in a bathtub so it’s something that you have to be aware of you know there are consequences for us for example in Virginia Dr Phillips and Dr Isabelle mentioned this if you have a seizure and it’s always hard for me
Because I have I always had uh teenagers want to get their Learners permit to drive you know and they have a seizure so what is the what is the what is the rules on driving uh if you have epilepsy so in state of Virginia it’s kind of not
Weird but they have a kind of a tear approach to it first of all you cannot drive for six months from the your your your last episode your last seizure if you if you have no seizure from six months from your first one to the next episode nothing’s going on if you have
In other words if it’s been six months since you had your first seizure then you’re allowed to be re-evaluated by a doctor or it’s called you have to have a a medical statement from a physician saying that you’re okay to drive now sometimes this is managed on seizure
Sometimes it’s managed without I mean managed on medication sometimes it’s not so people might be on medications and then they may have what’s called a breakthrough seizure in Virginia if you have a breakthrough seizure you have to go for another three months uh without driving and then be re-evaluated by a
Neurologist at this time it requires a neurologist statement to say you can go back to to driving at that particular time so I’ve had students I feel out these forms are many times in Virginia for can they drive what is this consequences and things like that but I always consulted the neurologist because
The neurologist can tell me based on their observation based on their evaluation the patient is this going to be a complex problem is this going to be a long-term problem or what so those those are some of the things that you have uh uh limitations from a seizure
Disorder now you know the younger the child is that may be all different types of complex seizures we have what’s called focal seizures in Pediatrics sometimes in adults too uh we may be talk about a particular type of one of particular type of focal seizure tonight and then we have the generalized you
Know shaking we call tonic clonic activity where you generalize shake and things like that and then we have the situation where teacher calls me and say you know I think you need talk to this mother this kids be he’d be in class and talking all of a sudden he just
Goes mute for a few seconds or he just go staring abson seizure so that that seizure is not associated with any shaking but just kind of a a a Detachment from where they are not like narcolepsy that’s that’s falling off from lack of sleep so that’s a it’s important to understand the difference
Between those two things so the consequences are that but I think the biggest problem we’re having is that what types of people having seizures who has who having more seizures than others and what how do we get them to care I think that’s the biggest part about it
How we get them to care I think you want you had um want to add something to that Dr I saw you flash me on your mic there yes um I um I just want to just go a little bit more uh detail in different types of sieges not that
Detailed but just how could my question to some uh patients of the people out there uh they may want to know well how can I recognize if I’m having a seizure or if someone el else is H having a seizure as you mentioned uh focal is a
Part of the brain for example uh say uh part the temple lobe seizures which your temple is on the side uh and this is a l process of emotion and make which made also plays a role in short-term memory uh people who have these seizures often may experience that aura uh which may
Include sudden emotion uh changes things like even fear or Joy or uh even problems with certain things like swallowing uh so that could be a possible a temporal seizure then you have your frontal lob seizure uh which is uh is part of the brain that controls movement so
Sometimes a patient may uh um have movement their arm flexing their arms or uncontrolled movements or repetitive movements or rocking um they can move their heads uh in the frontal lobe AAL lobe which seure which is your Cobe which is the back of your head uh the of the brain uh this affect
Could affect your vision and also somebody may see hallucination so this hallucination uh where stigmas uh people think oh this person must be crazy U not knowing that back then maybe this person was having a seizure so um that’s a CPO uh and then we talk about the more
General uh different types of seizures where one we call a tonic where you lose movement a sudden loss of control and where you can you know fall to the ground and there’s different other types but that’s I just want to mention the different parts and there’s many more
Different types of seizures out there some may affect the whole body some just certain parts of arms limbs I think Dr Isabelle I think uh Dr Isabelle touches on something really important because I have seen patients who have had absance or more non-traditional presentations of epilepsy or seizures and they have been
Dealing with this for years because they weren’t sure what to do so again you know God bless Dr Isabelle letting everybody know the variety of symptoms that can all be considered epilepsy that can all be considered a seizure it doesn’t all always because I think we are stigmatized stereotyped influenced
To think a seizure is just this and there’s so many other ways and unfortunately like I said you I had a patient who had abson seizures for about five or six years and failed in school just a whole lot of frustration because him nor his loved ones really thought that this was a
Seizure issue that’s that’s that’s so important go ahead Dr G well iute you add to that sometimes you unfortunately you could get a misdiagnosis of ADD and on uh medications like Rin adero but sometimes high doses of those meds can also induce seizures absolutely absolutely um I was I was going to say
That you know we talked a lot about um different types of seizures epilepsy and things like that but we need to talk a little this a little bit for a brief second About Management the first thing I want to say the misconception that do not stick anything in someone’s mouth
When they’re having a seizure do not do that and you know the misconception got out there you know put them in the mouth keep from biting their tongue no don’t do that what you want to do is make sure they cannot hurt themselves you gently you help them to the ground or whatever
But do not try to put anything in their mouth if you try to put your finger in the mouth you probably likely to get a bit off so do not do that so there are other things to talk about in man but but I want I want to bring that point
Out first so but I know Dr Plumb you probably have uh women with seizures that’s not related to pre- clamps here and it presents a difficult management for you because you got you got to worry about you know how the medication gonna affect the pregnancy and how’s the
Medication gonna affect the baby so when they come out to see me that I got a pretty good baby so you want add anything to management from your end about that um generally if women have um you know well controlled um epilepsy and they’re on a medication usually um the
Newer generation of medications are usually well tolerated in pregnancy they usually will have a very successful outcome now one of the things is is as the pregnancy gets bigger and more advanced sometimes the level of the of the medication that you do also lowers too so generally we also have to follow
The serum levels just to make sure you’re at the right level um for that so sometimes their levels drop and some of the women they end up coming in with a SE seizure and then it’s a differentiation of the two because them having a breakthrough seizure is quite
Different than a clanic seizure because in the clamp seizure the only cure for that is delivery of the baby and it depends if it’s very premature you don’t really want to deliver the baby if the patient just has a breakthrough seizure so that when you know neurology gets
Involved we do an EEG we check the blood pressure we just make sure everything else is fine sometimes also we might do a CT scan of the brain or MRI of the brain because sometimes a bleed or space OCC occupying tumor can cause um a breakthrough seizure or even a new um
Onset seizure so that is also sometimes we also have to take in mind and not every pregnant woman that has a seizure isn’t the clanic seizure thank you thank you uh so you know we we uh we we talk about some of the limitations of of of having a
Seizure or epilepsy I should say uh we talked about some the limitations but what about about breastfeeding what about breastfeeding and and seizures ordered medications can you can you comment on that uh Dr P um against the newer ones that are that are more familiar with like heo and lctl um those
Are the most common ones they’re compatible with breastfeeding um it’s not an issue um and also it doesn’t really cause an increase in um fetal malformations as we used to see with back with the older medications right so that um such as spinabifida or um or you know growth restriction and and things
Like that we used to see with the older medications these newer ones are more well tolerated and usually women are compatible with breastfeeding so there you have for our women for our women out there uh you you you can have a seizure order you can be on medication you can still safely
Breastfeed if that’s what you want to do so is Dr isar you started to say something I’m sorry yes and I also do HIV the newer medications uh unlike the uh for example the Dilantin which could um the antiviral meds could affect the um the metabolisms of the the antiviral
Meds the levels of the treatment or it can lower the dilaan level or or it could raise the dilaan level with these newer agents you have less interactions of medications with the new seizure medications and we already talked about driving but but again you breakthrough seizures might be a consequence of not
Properly taking your medications you know so if you if you have an epilepsy uh disorder and you’ve been prescribed medications please don’t miss them or stop taking them because like Dr Isabelle said if your levels drop then you’re likely to have what’s called a breakthrough seizure and if you take too
Much you may have some other neurological complication and or body complications Dr Phils did you have something you want to say I just wanted to add on to what you were saying 78 which was which is you know anytime there’s a significant change in your health if you have a seizure disorder
You want to check in because again there are a variety of things that could affect the drug levels and if your drug levels are not appropriate then that could unfortunately make you more likely and more susceptible to having a seizure so again you know one of the interesting
You know nuggets or factoids out there with respect to epilepsy is sometimes it can be associated with a shorter lifespan but in looking at that shorter lifespan it also would that was associated with not managing it well not taking the medications that prescribed maybe not staying on top of ma of
Monitoring the drug levels maybe not letting your doctor know that things have changed I’m pregnant I’m taking this new medication now I’m in the hospital and I have an illness all of these different scenarios can possibly affect your medication thereby making you more at risk and unfortunately when
When you have a seizure anything is gain you could fall hit your head on the corner of a table as they say in the Virgin Islands party Doney thank you Dr Phillips you so folks you’ve heard we we is so much complex things to think about uh as a physician
Or a health care provider when you’re talking about seizures ORS you know we we we don’t know all there is to know about every seizure that’s out there there’s so many different types of seizures there’s so many types of com of things we need to do so we need more
Information to understand so that we can better treat seizures and part of part of that process is going through what we call clinical trials clinical trials where we we we we evaluate a medication to see if it would have the effect the desire effect we want to have in
Suppressing seizures or getting rid of seizures and and so forth and so on there may be clinical trials on different types of modalities or implants or whatever but the problem we have in our society is that we don’t have enough people of color that are involved in ourin clinical trials so you
Know we need to get people to understand that you know if you don’t participate in a clinical trial we don’t know what’s going on in our own Community because we don’t have you know we have we are our own unique type of people and we might respond differently than say another
Type of non people that are not of color so we need to be involved in those studies because more of us are involved in these studies the more we can figure out how it is best treated for our different um uh Society so uh we have a special uh presentation tonight um to
That end uh you know we uh we wanted to talk about people getting involved and a lot of people are are fearful of getting involved in clinical trials but I don’t think you should be fearful because they are necessary thing that we have to do and if there’s a situation where you
Can’t be involved in in a clinical trial then uh you know you won’t be involved in it but you know you can participate anyway so Dr Phillips has uh done a great job of of uh uh Team contacted him about getting uh people involved talking about seizures and uh I’m GNA I’m going
To uh digress at this time and let Dr Phillips introduce uh our special guest tonight go ahead Dr Phillips so again as Dr boy can just mentioned you know one of the big things even before we talk about seizures is the reluctance and hesitancy that we as a community and I
Say we I mean African-Americans have when it comes to participating in medical research and when we look at the conditions that affect us if the research being done on new treatments are not including individuals that look like us how can we expect these treatments to be most effective for people like us so
Understanding that you know we understand that there needs to be more compassion there needs to be more sensitivity so we’ve been working with other entities to try to find number one identify good quality research for our communities to participate in and then also making our communities aware of
These opportunities so we have Miss Sheila Thorne with us tonight she is the president and CEO of Multicultural Health Care Marketing Group and it’s an organization that is working on trying to improve the stigma that has prevented us or made us as a community more reluctant to participate in any research
And we know if we want to optimize the treatments that are available for our community when it comes to epilepsy we need to be involved so without any hesitation with any no further Ado I’m gonna introduce my sister Miss Thor welcome Sheila how you doing thank you
So much Dr Phillips and what a privilege and an honor to be yet again with the Second District Health and Wellness committee and I appreciate the opportunity to talk about clinical research and people of color and and what you have said initially to introduce this webinar was outstanding
And clearly I think this will be a wakeup call to many not only of healthc Care Professionals but others but here are the facts ladies and gentlemen I’ve been doing this work in clinical research of black Latino Asian and Native American populations for about 30 years working with big Pharma helping
Them to be culturally respectful culturally competent culturally proficient and culturally uh respectful of our cult and where we’ve come from and historically the industry has not done a good job of reaching out to people of color uh in terms of encouraging them and educating them about clinical research I have a virtual
Company since 2003 I came out of the medical advertising World mom was a nurse sister was a nurse so this stuff is in My DNA so I I totally understand why we have to come together as a people in order to be more educated and make informed decisions about our Healthcare
And Clinical Research in particular but but here are the facts 578,000 African-Americans have epilepsy or a seizure disorder that’s according to the Epilepsy Foundation I had occasion last week of speaking to a 57y old African-American man who has had seizures for as long as he can remember
He was officially diagnosed at the age of 10 and he was having then one to two seizures a month then they went away at least that’s how he expressed it they came back when he was in his second year of college and that started on the role
Of having two seizures a month it interrupted school he had to drop out he couldn’t keep a job because he never knew when these seizures were going to happen so his income was erratic and that affected his family he certainly had an opportunity to try to get good
Positions but he couldn’t find them so at the end of the day he went to a number of very prestigious Health Care organizations and finally they told him we can’t do anything for you so he’s been living with seizure disorders and now at 57 has gotten himself acclimated
To what triggers his seizures where he has to go to get care whether the medications work and it went on and on we talked for about 45 minutes and that was a really eyeopener to me to see it’s real it’s real and we have to understand
And be educated in order to learn but clinical research is the foundation of evidence-based medicine as as all have said if you don’t have good data if you don’t have the end the population that’s going to be affected by this in the clinical trials you’re not really sure
About side effects about dosing about all of the issues regarding Quality Health Care and so my task and my team’s task and we are all of color half of us are multilingual and that’s all we do we don’t do advertising for dolls cake mixes and you know fast food we do
Healthcare from prescripture medicines to over the counter medicines what does the end user need to know about their condition living with it surviving with it and where to go to get the quality Care especially if those folks who are going to be treating us don’t look like
Us and that obviously presents a barrier right from the jump but we’re in a new day now and that’s why I’m so excited about Omega SciFi interest and dedicating this webinar to this issue you’re the community leaders you’re the ones that are power to be the trusted Messengers to deliver correct
Information within a cultural context so I’m going to go very quickly through some slides I prepared for this evening to show you why this has been such a challenge for people of color in terms of volunteering for clinical research I believe uh brother Percy has my slides I
Don’t know if he can pull them up brother Pierce yeah there you go perfect perfect and please I’ll tell you when to go to the next slide increasing diversity has always been strongly encouraged by the Food and Drug Administration who approves all of the drugs that we are currently using both
Inline and pipeline the challenge has been it’s only been encouraged But A New Day Has gwn now it’s no longer just a nice thing to do now it’s a mandate from the FDA that you must have a proportionate number of people of color in order to do subgroup analyses to make
Sure that this drug this intervention this device is safe and effective in everyone I have two nurses on my team my CFO is a former auditor for the FDA with the specialty of medical devices so we know the business of medicine we are not clinicians but we understand how to
Reach out and engage so let me take you why this is a new day next slide please in 2020 March 11th we’ll never forget the year 2020 will we that’s when the World Health Organization declared covid-19 a pandemic my public health friends and colleagues that I work with
We started talking about that pandemic in the summer of 2019 we heard about this novel Corona virus that was devastating the population globally and we knew by the time it made its way to the United States it was going to decimate people of color black latino Native Americans and we were we were
Proven true unfortunately but then about two and a half months later in that same year a African-American Man by the name of George Floyd was murdered by unethical inhumane police in the streets of Minneapolis and so that opened a Pandora’s box of pervasive persistent injustices and inequities in American
Society it got a Global Response the pharmaceutical companies put aside their their shareholder concerns and market share and joined together and in a record amount of time produced a vaccine that saved thousands and thousands of lives so there in lies the key to making sure that we Galvanize are the best and
The brightest in research to tackle a problem imagine if we could do that for heart disease or for some cancers or for others where we would be today but it also illuminated the fact that there are issues with these populations that discourage them from uh going into clinical research next slide please so
From that vantage point in 2020 we have to take a step back the first time the government documented that there were Health racial and Health Care disparities was in 1985 so these disparities are not new it’s not unusual for people of color to be less served less looked after Poor
Care get sick Master less screen all of those things were there and this was with uninsured people so that Malone Heckler report that Thomas Mone was a biostatistician for NAA they looked at hospital records They looked at charts they looked at everything and the conclusion was people of color get less
Than quality Care in America interestingly enough that report made it possible to launch the federal office of minority health and State offices of minority health and so Healthcare now became inclusive but we haven’t made a lot of progress since then next slide please fast forward to the 2002 The
Institute of medicine National Academy of Sciences Landmark study unequal treatment Congress requested and this was pushed by the national Medical Association representing 50,000 Physicians of African descent to take a look at this why are these disparities existing best technological care in this country the the Premier Medical teaching
Institutions among which you know are morous mahary Drew and and Howard all of these things why are these groups still suffering more getting treated less and dying sooner but this study was a little bit different this was a study of insured African-Americans so you can no longer say poverty was the problem okay
They had insurance they were economically middle class and they were still suffering from the same diseases so this was quintessential and notice the language unequal treatment that’s civil rights language unequal treatment so we clearly are going now into the justice and Equity Arena of how we can eliminate these disparities next slide
Please but when we take a look at at what we need next slide please hope that didn’t get up okay great this Still Remains uh the pervasive Factor Health from the Kaiser Family Foundation despite significant advances in civil rights race remains a significant factor in determining whether an individual receives Clare
Whether an individual receives high quality Care in the determining Health outcomes so we’ve got to be bold and courageous and make sure sure we speak truth to power it makes a difference what you look like in this country when you go in to seek medical care people make assumptions they assume that you
Don’t have money they assume that you’re poor all those stereotypes that your brothers talked about kick in and unfortunately that has been persistent and pervasive next slide please but we know why this mistrust and distrust is so D deep and one of the featured most egregious examples of
Medical research gone bad was the TUS syphilis experiment subtitle of it is watching the progressive of syphilis in the adult negro male so it purportedly started out to make these groups different I had the occasion to speak to this author James Jones and if you haven’t read this book you should he’s a
White investigative reporter that took this on to find out what was this Tuskegee all about and we know what it was all about the New York Times uh actually was the one of the grandchildren of one of the Tuskegee members blew uh was a whistleblower over
This study and it shut down but it had gone on for 40 years and that definitely impacted the mindset of those ignorant illiterate farmers in Tuskegee Alabama but it’s not just Tuskegee that’s a metaphor for bad medical research there’s more to it than that next slide please and if you haven’t received this
Book you need to pick it up and read it IAL apartheid by my dear sister brilliant sister Harriet Washington she traced medical experimentation in Black Americans from Colonial times to the present so Tuskegee was a blip on the radar screen A lot happened before it
And a lot of it continues today so this book was definitely a bomb into the medical research community that we have to acknowledge that people know they remember and it makes them afraid of volunteering next slide and this now because of covid and the rush to get people to volunteer for the
Covid vaccine trials unfortunately this was the headline in the latter part of that year 2020 I won’t be used as a guinea pig for white folks I don’t want to be a lab rat I don’t want to be part of an experiment but as many of you
Brothers said there are various kinds of clinical trials not all of them are for pharmacological treatment or to or for drugs there are some observational tribes there’s a number of Trials but we don’t know about them we don’t understand what their impact is and we don’t really appreciate the fact that if
We’re not in the trial how can we expect quality care of the providers who have gone to school and been medically trained so we want to make informed decisions next slide this was a book that I found back in 1999 that was produced by it was actually a booklet um National
Pharmaceutical counil I picked it up when I was attending a conference and it intrigued me because this was was produced by the national Medical Association Along with the members of the MPC and here’s what they said phical genetic research in the past few decades has uncovered significant differences
Among racial and ethnic categories and Metabolism clinical Effectiveness and side effect profiles of many clinically important drugs well I was excited when I got this brochure and I called NPC and I said how many of these can I get to use as I speak to groups and Community groups and healthc Care Professionals
The young lady in their Library said you can have all of nobody ever asked for so that shows that there’s a lack of understanding on the professional as well as the personal side about the uh the increasing need to have diversity in clinical research you can order it
Online and download it if you’re interested in and what it has to say and use it for educational purposes next slide but I was encouraged uh you know because when you look at the demographics of the country these numbers about participation in clinical trial and this is 2018 data have been
Persistent if there are 13.4% African-Americans in this country only 5% participate in clinical trials Hispanic is even worse Asians are not even on the radar scree and Native Americans haven’t even been thought of so there’s obviously a disproportionate problem that we’ve got to change but look at what happened with covid-19 next
Slide these are the results from the covid-19 vaccine trials 10.6% of blacks participated that’s the highest I have ever seen in my experience 11.6 Hispanic 5.7 Asian and obviously we’ve got a serious problem with our indigenous populations so this means to me that it’s possible what did
They do during the clinical trial of recruitment that we can learn from they went on the ground they went into barber shops and beauty salons and churches and bodegas they met the people where they’re at face-to-face encounters and that’s what helped convince people to be a part of clinical research so this
Clinical diversity diversity and clinical trials is not a dream it’s not elusive but we’ve got to change the way we do things this is a watershed moment we’ve got to switch gears and try not to do the same thing over and over again if we expect a different result so this
Tells me there’s promise and working with leading organizations that have the trusted ear of the community like Omega Omega CCI would be critical to opening those doors and educating your constituents and your members and all of those connected with you so I’m incouraged I’m not an optimist or a
Pessimist I’m a realist you know do you have the money do you have the time to make it work that’s our charge and we as a people need to take ownership of that next slide here is where the the the game really changed in April 13th in 2020 Dr
Robert kff FDA commissioner said that at as the population becomes increasingly diverse ensuring meaningful representation of racial and ethnic minorities in clinical trials is fundamental to Public Health so it’s now no longer a nice thing to do it’s now no longer just encourage it’s a mandate those studies will be bounced back those
Drugs those devices those interventions will not be approved unless there’s a proportionate number of people of color in clinical research to show this is safe and effective in everybody that was 2022 last year so we now have a different playing field and we need to
Step up to the plate and make sure our members our constituents our families our communities are educated next slide so achieving diversity is a key Focus throughout the FDA to Def to facilitate the development of better treatments and and quite frankly if you can help those that are sick the most
Doesn’t that help everybody so so clearly you need to start with the vulnerable group groups who are disproportionately impact and help fight disease whether it’s a cure whether it’s a treatment and most of the most of the websites of pharmaceutical companies I’ve read say we’re here to improve the
Quality and longevity of Life of all Americans but if you’re not in it who is that all Americans you’re talking about Okay so we’ve got to make sure that we demand our place at the table have the resources and the ability to spread the word about the critical importance of
Clinical research next slide and these clinical trials as I said in the beginning really make healthc Care Professionals confident that what they’re prescribing is not extrapolating data from White middle-aged men as they’ve done for so many years but really focused on the issues of this group I’ve worked on I’m working now on
Three clinical trials with my team one on osteoarthritis one on uh lupus and another on epilepsy and that’s what brought me to Omega scii this clinical research on epilepsy that is showing very promising results in terms of getting people of color and they’re they’re very keen about doing that I
Work with neurona Therapeutics which is the company that is uh has the protocol for this clinical trial and I know you had the pleasure of meeting uh some of the members or one of the members that came to the Pittsburgh Conference as well as on a on a zoom meeting that we
Had a couple of weeks ago so it’s a new day and we have to again step in that spot and don’t wait for it to be done for us demand that it be done with us next slide and interestingly enough some appear something appeared in the uh in
The literature because my team rad J new enging journal and all the medical books and the uh pulse oximeters were denoted during being used obviously because of oxygen saturation during covid and they discovered that people with melanin people with dark skin the readings were not accurate so those devices didn’t
Work in people of color people of dark complexions they would not have known that or they would have known that I should say if people of color had been in the clinical trials for this device they were not so that’s dangerous so you’re sent home thinking you have a
Proper level of oxygen saturation and you don’t and some people of color blacks in particular died because that diagnosis wasn’t accurate so this is serious stuff folks this is not just something that the pharmaceutical companies are trying to make a new Buck this is life and death the sister on the
Right is part of a team uh that is developing a new oximeter that will be more accurately used for people with melanin so stay tuned on the results of that but that’s one example of how we can be hurt by not being in clinical research next slide and then there’s a brother in
Nigeria a medical student who all of a sudden said how come all the pictures in medical books are white folks you know how are dermatologist how are other do to to see how disease presents so he’s on a mission he’s also an artist so he’s redesigning some of the illustrations in
Medical books so that whoever is studying this they’ll see that everybody doesn’t look the same how does this disease present in people with dark skin how would you know whether a rash is red and somebody with my complexion how would you know what affects my skin so this is another simultaneous movement
That’s going on and he’s making a big difference so stay tuned for him as well next slide and the bar to participating or I’m sorry go back one I’m sorry okay thank you the barriers to volunteering if you feel like you want to and can and should be in a trial
Transportation cost for child care cost for Elder Care uh how many visits how is it going to affect my job how is it going to affect my life uh how much time is it going to take what are the constraints what are the requirements and and all of these now are being put
Into plans for clinical research so that there may be uh medication for the study covered free there’s a stien for travel and not necessarily reimbursement but giving you the money in advance so that you don’t have to lay it out and wait to get your money back in 30 days because
That doesn’t work with Community folk okay who are living paycheck to paycheck so there are major changes being made to put into the protocol what about the inclusion exclusion criteria we know it has to be very tight because we want the outcomes to be clean but does it have to
Be a string as something they’re asking for so irbs are taking a look at that uh and so if you lessen some of those restraints or those those commitments does that impact the quality of the research so these are conversations that are being had but my concern is we’re
Not at the table having them and we need to make sure that we insert Physicians like yourself across all therapeutic categories to talk about your lived experience with your patients the patient voice and how this clinical study will affect them so that’s the world of social determinance pharmaceutical companies have the
Resources it’s um question of How It’s allocated next slide so Partnerships allies or what I look for before I step foot in the community and ask that they consider volunteering for clinical research and Omega SciFi with your legacy historically globally networks your Physicians who speak so eloquently and
And correctly on this webinar that’s who we needed to table so the first line is what you did tonight education what is epilepsy what are the symptoms how do you get it who treats it people don’t know that your emergency room visit hopefully if there’s an issue might lead
To an neurologist or it might not so we’ve got to make sure that we are all along the Continuum of patient advocacy but to start with the right partner and to invest in you I don’t I tell my clients this is not a cost to partner with Omega scii this is an investment
How serious I are you about increasing diversity what resources can you give this organization to use their Network their resources to educate people we’re not telling people to volunteer we’re saying here’s what it is here’s what it means let’s talk about it go to your provider have this conversation make
Sure that this clinical trial whatever it might be is appropriate for you bring your family in bring a pastor in bring your trusted advisors help the community take charge and control and be empowered I know whether uh it’s on this particular the next slide but my team
Pulled together a video I’m going to share it with you it’s only about nine minutes because we found that there was no education about clinical research in the community and we needed to start the conversation I wrote the script these are black actors the team that produced
It these are our brothers that work for Good Morning America so everybody connected with this video is black so hopefully you’ll enjoy it U Miss we may run out of time because we’re kind of getting to the end of our thing uh we may not be able to do it because we only
Have like a couple minutes left uh all right well let’s skip it then I can send it to Dr Phillips to share with the group because I love your feedback and you know your input we did three videos one with a couple a wife that was considering being on a breast cancer
Trial the next working with the clinical team and the third the outcome so at the end of the day all the forms of inequality and Injustice in America are bad but of all of them health is the most shocking and the most inhuman because it often results in physical
Death so clearly there’s a clinical imperative there’s a research imperative but for our people there’s a moral imperative if we want to close the gap in terms of racial and health ethnic disparities we’ve got to be at the table and if there’s no chair for you at the
Table I will work with you to pull in a folding chair so we put in front of these companies what we require to receive Quality Health as all Americans thank you for your time thank you so much Miss Thor was it was it was a pleasure to have you speak to to us
Tonight uh and as I say I I want to make one quick comment because during the covid crisis Dr philis and myself were on a a a a um a team of educating black folks about um covid and how it affected black people so it doesn’t surprise me
Because when I looked at the studies and I knew the 10% of of only 10% of people were involved in the clinical trials for these vaccines it doesn’t surprised me that the vaccines were not uh embraced by the black community initially exactly that was part of my job to say this is
What we have we have 10% of black people involved in these studies what if we had more I think attitudes would Chang about the outcome of Co and these vaccines you would be afraid of them you know biggest biggest thing we had deal with was uh talking about covid I mean talk I’m
Sorry talking about Tuskegee and things like that so this is what we want to focus on people need to get involved in these clinical trials so I thank you so much for being here tonight and I’m going to turn over to Dr Phillips to give a few closing remarks and we’re
Going to have to get out here guys thank youa thank you so much for your information I think your passion and your you know just your expertise in this area and your investment in this area is really well felt and I think you know what you’re saying you know as far
As partners coming together that are invested in supporting our community you know not only you and I but there are other entities in the community that need to link together so that we can not make us as I said during our pandemic talks the low hanging fruit there you go
And it’s not lwh hanging fruit in a good way it’s lwh hanging fruit in a bad way again in line with our monthly message as far as prevention and understanding not only the conditions but what to do with the conditions if you find yourself in that circumstance and how to do work
That can help someone down the road as far as them being able to make someone else’s life a better situation than their own so I thank everybody for their attention I thank my brothers Dr Isabelle Dr plumber you know for their expertise and their time and our new moderator who has stepped up
Tremendously Dr boyin thank you very much and I must say my brothers I’m mad that I didn’t get time to put my boats on on y start but Sheila thank you so much and again you know your beauty is everything looks tremendous so I thank all of this
Black Excellence that we have on here and let’s keep it going about nothing without us nothing about us without us that’s correct so that’s where we got to go and thank you all for your passion and let’s spread the word about this neona clinical trial on epilepsy of
Seizure starting in the temporal lobe that’s who we’re looking for so it’s just begun right thank you so much but Brothers I’m going go ahead and take us out brother Pierce if you go ahead and uh let I I’ll give the uh close out if you will uh at this particular time for
Piery all right thank you so we thank you so much for being here tonight we especially thank Miss Thorne for being here with us to talk about clinical trials involving the black population and people of color we need to be more in these trials because we can’t we
Can’t complain about the outcomes if we don’t get involved so see how they affect our community so we want to thank you for being here I want to give a special thank you to our Second District representative um Dr Rico gails for letting us carry on these conversations
I want to thank our guests and our families for being here and I especially want to thank our brothers for uh uh taking the time out their evening to come and talk to us and get their information about how we do things and how we prevent medicine clinical trials
Believe it or not can be a part of preventive care so with that have a good evening and we’ll see you next month you
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