So how does this all relate to race why is it so specific to us today so important for us today to focus in on um within the African-American community and as empowers is expanding we’re going to be working more within the Hispanic American community and many other
Communities is because we know there is this huge phrase often used a health disparity or difference in outcome based on race and and what are the facts around that well I tried to summarize it by giving us 10 simple facts fact number one Myoma is the most common blood cancer within African-Americans that
Incidence is growing um so we know that uh when you think of blood cancers we typically think of three there’s Leukemia Lymphoma and Myoma they’re all somewhat related they’re kind of cousins uh but more often than not within the general population leukemia and forms of lymphoma are more common but within the
African-American population uh it it is the most common and that incidence is growing partly as uh the incidence as the number of African-Americans proportionately speaking in the country grows so right now you know approximately 13 to 14% of the country would be African-American and as I’ll show you in a moment approximately 20%
Of all Myoma patients are African-American that number is continuing uh to grow uh on on the other side side there are numbers that are smaller that we’re working towards as I’ll share with you uh later uh today uh for example if if roughly 14% of all individuals this country African-American only
6% of physicians in this country are of African descent uh and that’s something they’re working obviously to correct so that we can have a better representation even within the healthcare sphere so as I’ve mentioned a couple of times say myom is twice as common in African-Americans that’s fact number two
Fact number three in and this this ties into when the diagnosis is made you know when when when we went to medical school uh we were sort of told and I’m sure Dr Cole and Dr Zander can back me up on this we’re kind of told that you know
Myone you think of as sort of a real geriatric disease mostly when people over the age of 70 the average age of diagnosis is around 69 to 70 but in fact it’s significantly younger in African-American and Hispanic American patients and so sometimes people don’t think of it in their younger patients
And I mean very young as we heard from yel on his 20 in his 25th year I traveled once to to Latin America to to u to meet what we think is probably the youngest person ever diagnosed with myom is an 8-year-old boy that’s not very
Common of course to happen at that age but it can be diagnosed at a younger age uh as I commented that uh already that African-Americans comprise about 20% or one in five Myoma patients in this country this this is a little bit hard to follow I AP izee for this but these
Are are numbers that come directly uh from a big database What’s called the sear database where we just look at what is the expected survival or the expected death sadly the mortality of different groups based on their uh race and their diagnosis so these are Myoma patients
And so we look at Myoma patients um and what their expected survivable are if you are uh um um black and if you are um non-h Hispanic uh black and so the difference here is twice I tried to circle the number to show you a little
Bit here 8 versus 4 so the the the time from diagnosis to death is half in African-Americans than what we see in others that’s the part that is perhaps the most striking today and the most uh the most disturbing and why we’re doing what we’re doing I commented that part of that that
Reason is if I really had to break it down I I would say that there are of course critical overarching drivers of the disparity that you’re going to hear a bit about today whether it’s systemic racism the social determinance of Health the Health Care system in general there
Are lots of layers that have led to mistrust within within healthc care in general but specific to Myoma is the delay in diagnosis and access to the right treatments and so the delay in diagnosis remember I said you know the average patient it takes three visits to
The family doctor for its piece together it often takes about 6 months obviously those are just averages some people it’s 6 weeks some people it’s two years uh the average is about 6 months it’s delayed in African-Americans for lots of Reason a lot of it is getting access
Just to primary care you’re going to be hearing from from Donna in a few minutes about the importance of connecting with your primary care team and expressing your concern and potentially even expressing your higher risk of disease like multiple Myoma uh the primary care providers themselves may not be as
Familiar with Myoma or realize that this 52-year-old black man may be at higher risk of Myoma and maybe that anemia uh isn’t something that we just have to wait and watch maybe it’s something we need to investigate further or the presence of confounding diseases like diabetes which is more common within the
African-American Hispanic communities how many of our patients have said to us you know for months my doc told me that my anemia uh that the protein in my urine that my kidney function all that my neuropathy that that was all for my diabetes when in fact the whole time
They were growing Myoma again I’m not here to scare anybody with diabetes to go run to your doctor and say do I have Myoma but these things can coexist and it’s really important for us to make that distinction and number seven is that I sometimes talk about the four T’s these
Are the first three that if I were to summarize why why I shared with you earlier that we’ve gone from an average survival of one year to over 10 years it would be the result of four things that start with the letter t helps me remember them number one is triplets or
Three drug combinations now we’re about to change this because as Jeff is going to show you we’re about to move to four drug combinations right know it’s very American right if if three is good four is better right um let’s give them more right um and and but but nonetheless the
Concept of using multiple drugs together I mean how have we to some degree overcome HIV not because we found one magic drug it’s because we use the right combination of drugs together Myoma is like that and so we’ve used triplets uh We’ve also used transplants or autolus stem cell transplants you’re going to
Hear the basics of that also from Dr Zer in a minute where we can actually give people a large dose of chemotherapy to wipe out their Myoma but we rescue their bone marrow by having other what we call stem cells or seeds that can grow a new
Bone marrow and then very recently as Jeff also will share with you this concept of car te- cell therapy where I can take te- cells out of a patient or cells that are like Soldier cells train them to recognize the Myoma multiply them in a lab and then give them back to
Patients really remarkable the sad reality today however is that African-American patients and Hispanic American patients have had less access to those three things I was just this week working with a team that had demonstrated looking at all the car te- cell trials that have been done in Myoma as well as lymphoma
Leukemia 1% of participants in those trials have been African-American so clearly under what we need to to have and that brings us to point number eight which is the last T which is clinical trials and we’re here to talk a little bit and we will be talking with our
Patients today a little bit about clinical trials and I know sometimes that sounds scary and people wonder am I going to get a placeo am I really going to get a real drug we’re going to try and demystify that for you because clinical trials have an immediate benefit to patients very often and
Indeed can have a long-term benefit across the community but clinical trials have moved the needle forward for us and sadly despite what I shared with you that 20% of Myoma patients are African-American representation on clinical trials has been typically actually under 5% this is about the most
Generous I could give it at 8% and when we look at what we call pivotal trials those trials that have led to drug approvals it’s been more in the range of 2 to4 there are some biological differences you know someone uh someone uh uh uh from a either scientific or you
Know a public health background might say to me well you know Joe maybe African-Americans have a shorter lifespan with Myoma because maybe they get a more aggressive type of Myoma and in some diseases we may see this in prostate cancer and others but you know what the opposite is true in Myoma
Sometimes we divide Myoma into two simple buckets high-risk and standard risk African-American patients are less likely to be high-risk they’re actually more like to be standardized and that’s because of some of the genetic things that are listed here on the screen but even if you don’t bother with the
Genetic phenomenon just that you would anticipate that African-American patients would actually have a better survival because they’re less likely to have the high-risk form which brings me to the last point which is that when African-Americans receive equal access to care their survival outcomes are equal at times even better and we’ve
Learned this through the VA system I had a I gave a talk this week to a series of positions within the VA system and we explored this concept so in the VA system at least theoretically independent of your race or background you’re given the same access to Diagnostics and treatment and
So when they look at their database over the last 20 years they found that black patients actually had a better survival than white patients with my m so to me this even widens the disparity more because it tells me that they should be doing better we should be doing better
When in fact we’re doing half as well and so that to me deepens the disparity next slide so my last couple of slides is well what are we do about and surely despite the energy in this room we can’t fix this in one half day but there’s a
Lot that we can do and it’s going to take everybody coming together and this is why we created the Empower program was to help facilitate the dialogue between all these groups the Lake Community the medical community the regulatory Community the corporate Community we need to all work together
To make this happen and I believe one of the major missing pieces in efforts that have gone on in this sphere is to truly engage the community you know it’s one of the things that so impressed me about what they do at caros is that sometimes there’s this idea that like you know
Here we are as the medical system and and you come to me when you need me right I’m not going to go help you until you come to me right it’s it’s like going to my wife thinks I have a an addiction to Costco anybody else go to
Costco Anonymous here right so um so so you know she’s like are you finding another reason to go to Costco honey I’m like but we really need 48 rolls of toilet paper um and so and so again I’m not trying to pick on Costco but like
Costco doesn’t really reach out to me or maybe they send me because I look at the app every once in a while they send me notices but really I go to Costco to get benefit as it work but but we need to understand as health institutions we
Actually need to reach out in the community to promote good health and what better place to do that than in a church where there is confidence and trust and support among its membership and so that area of community engagement is what we’re focused on here today as
I’ll share with you in a moment we we’re all together and so if I had to summarize if I were only allowed to show you one slide today it would be this one and it’s pretty much my last one and thankfully you don’t have to listen to
Me much longer but I summarize EMP power with these three verbs that are in these three circles engage educate and enhance we want to engage the community in events like this where people have never heard about Myoma can understand the basics can know how important it is as
Donna has going to share with us about communicating with their Healthcare team that maybe they have some of these signs and symptoms and they need to talk to somebody about it maybe they know someone with Myoma that they can be a support to all that aspect lands under
Engage and we’ll partner with anybody we’ve partnered marvelously today with caros and with this beautiful church but we’ve worked with fraternities cities the Black Nurses Association the national Medical Association uh uh barber shops salons You Name It We want to get the word out number two is
Educate where we want to educate primary care doctors so that time to diagnosis gets faster so there isn’t that delay so that they can know when is this diabetes and when is this Myoma what are the right tests I need to order how do I make sure that happens quickly because
Time is of the essence of Myoma and then lastly when I going to conclude with in these last couple of slides is enhance which is we want to enhance the care of those people who have Myoma through the providers that they see through the nurses through the pharmacists uh
Through all the members of the healthcare team and indeed the Physicians and find ways to do that and so Empower is really a national movement as I mentioned we try to go from City to City try to be emphatic we don’t just descend on Detroit and say here we are
Then leave tomorrow our plan is to have have an existing presence to continually work with caros and the community to try and engage and we’ve done that in these other cities that I’ve mentioned next slide we’ve also uh always had the premise of putting the individual in the
Middle and surrounding them and and we’ve worked as you can see here with all these groups and many many more to really try and provide them all the resources that they need many next slide please many of these resources we created electronically we we want to make sure that they’re very user
Friendly even from a cell phone knowing a lot of people may not have a laptop and people may not even have a cell phone we want to be very conscious of that digital divide and provide resources uh to people in person and so we’ve done a whole series of things if
Anyone here’s a a hip hop fan you may recognize some of the people thankfully I didn’t have to sing during this part of our our program uh but you may recognize douy fresh there and some others that we worked with next SL uh as I mentioned quickly we did a program at
Riverside church as well as broadcast to Grace Baptist on the juneth weekend to raise awareness um and we’re working as I mentioned on the uh educate side with primary care physicians teaching them the basics of Myoma so that they can make the diagnosis more more effective
In that sci and then lastly truly lastly has been our work um enhancing the care and drors Cole and zandre who will be presenting shortly uh were participants in this we created a program for medical students where we took minority medical students many of them from historical black colleges and universities and paired
Them with a Myoma expert for 6 months to do a project related to health disparities and then we all came together next slide we all came together at the annual meeting of the national Medical Association and all the students had an opportunity to present their poster it was really a remarkable day
Because the director of the National Cancer Institute so for us cancer Geeks this is like a really important person Monica Bertoli she was there and she agreed to do the poster walk with me and so she so these medical students who 60% of them was the first time they had done
Any kind of research before any kind of project before got to present their work to the director of the National Cancer Institute and our hope is to educate these students no matter what they become I mean I’m hoping they become Myoma doctors but no matter what they become that they’re sensitized to the
Importance of Health Equity and how this disease has affected their community and what they can do in service to support that Community I’m going to stop with a little video here that’s only 55 seconds long and so we’ll let you get a glimpse in in the Empower program we had in
Tampa just a few weeks ago as with Empower our objective is to change the course of my loone no matter what your background what your race or ethnicity is today we’re here together to fight against my LMA that’s going to take people like those who are in this room people who
Are patients people who are Care Partners people from industry people from the community uh people from fraternities sororities churches all the people we’re trying to bring together to overcome this as we think a bit together about why we’re discussing all of these topics today and why we’re thinking together
About Empower is that as with many answers but arguably as I noted perhaps even more so with Myoma race does matter in Myoma care and survival and our objective is to change the course of Myoma
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