So, I'd like to thank Mauricio and Carla for the invitation, and most importantly, it's really an honor to present the work, primarily of JC Gaisello, who's sitting there and who will actually take over for the panel, because I have to run to a talk as soon as I'm done, and give you sort of the story of disparity, Hispanic disparity in liver transplantation in the context of our program. So, much to the chagrin of our current president, the Hispanic population is increasing significantly, and it's actually occurring throughout the country. It is responsible for about 50% of the population growth that occurred from 2000 to 2010, and Hispanics also have the highest prevalence of obesity by ethnicity in the United States, and this is extremely impactful, because it is fighting with alcohol for the number one position in etiology for liver transplantation, and will, of course, impact this topic significantly in the future. So, in modeling looking forward, we currently are at about 17% Hispanics in the United States, but the projections are that in 2050, we'll be about 25% of the population, and it's important to note that Hispanics really are not a uniform group, so the vast majority of Hispanics in the United States are of Mexican origin, as am I, as is Dr. Lisker, but this is regional variation with this, and also, I want to bring to the point that there may be many people in your institution already that you may not realize are Hispanic that really can help build a program like this if you engage them and empower them in that. So, as far as health disparity, Hispanics have chronic liver disease rates that are two times that of non-Hispanic whites. In 2015, chronic liver disease was the seventh leading cause of death for all Hispanics, and the third leading cause of death for Hispanic men, age 55 to 64, and Hispanic men and women are 1.7 times more likely to die, respectively, from liver cancer, or without the respectively because I had another type of cancer in there as well, than their white counterparts. So why are there so many barriers? There are barriers in the Hispanic community, and I think some are summarized in the following buckets. So, from a societal level, there's a lack of awareness, there are important misconceptions about organ donation and transplantation, and there's some mistrust of providers that are culturally incongruent or can't communicate with them and of the medical establishment in general. From a family perspective, there are socioeconomic stressors, language and cultural differences and fear over donor health and fertility. Interestingly, these are important misconceptions that we see when we evaluate such patients. On an individual level, there's, of course, the language barrier, and then a very significant concern over putting strain on their family members, especially with respect to live donation, which is why we approach this a little bit differently. So what you can do through education, community, and community outreach is mitigate some of these barriers, and you can facilitate removal of these barriers through culturally competent care delivery. So in 2013, JC did a survey of U.S. kidney transplant programs in the United States, just to get a feel for, of the 240 centers that were out there, how many had an option of other than English on their website. And apparently, this was basically any, it could be any language, and there could be anything, even if there was a form translated into Spanish, that counted, okay? So that was 6.3 percent, and when you looked a little bit deeper into more culturally tailored initiatives, 1.3 percent. When this was looked at a little bit later, you can see that there was a small increase, but it's pretty marginal and non-statistically significant. Additional data were gathered in 2018 with respect to the presence of a bilingual transplant surgeon or nephrologist, and a Spanish-speaking transplant surgeon or nephrologist, and these numbers are actually reasonably high. So cultural competency is really about values, beliefs, attitudes, policies that are going to enable organizations to be able to allow providers and individuals, so organizations to deliver care that is culturally congruent, that facilitates effective implementation of these strategies. So our strategy to increase the acceptance of living donor donation, and again, this is both for kidney and for liver, primarily for kidney, was through the elimination of language barriers, through incorporation of issues related to culture and education, including crucial role of extended family and religion and religious misconceptions, or misconceptions about religious policies on transplantation, gaps in knowledge, fear of donation and surgery, and the desire to avoid any harm to the potential donor, as well as addressing financial and legal concerns and engaging in community outreach. So when Hispanic preferences were surveyed with respect to transplant education, what was found was that, actually prior to that, what we see in the United States in general is an approach to Hispanic patients, it's still the language is primarily English, information is delivered via written material, still in one-on-one discussion, and often it's a non-physician delivering a lot of the education and relies, of course, heavily on interpreters. Not surprisingly, Hispanic patients do prefer to be spoken to in the language that they understand because many of these discussions are really nuanced and really can't be delivered effectively with a translator. Face-to-face interaction is preferred, as is group discussion, and the reason for that is because of the incorporation and importance of family in the decision-making process. They prefer to hear from the physician and they prefer bilingual and bicultural educators. So as I mentioned, the approach to our Hispanic patients is a bit different in that we really emphasize heavily the inclusion of multiple decision-makers in the process because we think that it's very important, particularly with respect to live donation, where the patient may be reluctant to say that he or she has a potential living donor because of fear of harming that person. So when you look at the attitudes and knowledge of Hispanic patients before an intervention of an educational process, you can see the scores here before and then after. So you can change knowledge and attitudes toward living kidney donations simply by focusing an educational program to their potential misconceptions or gaps in knowledge. So at our program, we just updated this, that we have 49 bilingual and bicultural staff. So we actually didn't even know we had this many people until we surveyed it. We really are, you may be surprised at how many people in your center actually speak Spanish and are bicultural. So I would encourage you to look into that, but we're fortunate enough to have bilingual and bicultural representation in transplant surgery, hepatology, social work, nursing, medical assistance, financial coordinators, fellows, and anesthesia, as well as other subspecialties. Our pre-transplant educational sessions and pre- and post-transplant evaluations are exclusively in Spanish. Educational written material and website are also in Spanish. We have a dedicated phone line, and we have, we believe, a very culturally sensitive and congruent program. So what do these initiatives potentially do to transplant volume? So the kidney transplant program was initiated in 2005. And so if you look here from 2006 forward, we're in the dark purple. You can see that there was an impact on the kidney program overall and resulted in some programmatic growth. And this is a very competitive market in Chicago. We have a lot of transplant centers, a lot of kidney transplantation as well. So we are a busy transplant program, kidney transplant program, with over 5,000 transplants. We do about 220 to 250 per year. And here you can see that Hispanics, if you compare our numbers from 2001 and 2006, which was before the implementation of the Hispanic transplant program, to after, you can see that there was a very significant increase in additions to the wait list of Hispanic patients, 91%, which probably reflects increased access to care and referral patterns as a result of this. We had a minor increase in non-Hispanic whites. With respect to live donation, again, a 74% increase compared to a 6% increase. And in deceased donors, we actually also saw an increase possibly related to the ability to have more nuanced discussions with people about things like extended criteria, donors, et cetera. So if you look at the ratio of Hispanic to non-Hispanic white living donor kidney transplants, which is a metric of disparity, you can see that the disparity decreased by 70%. And when you look at this in the context of other programs, or actually I'll get to that in a second, but overall, if you can see the percentage of living donor transplants at Northwestern, you can see that we are doing a significant amount in part related to the implementation of this program. If you look at these same data, this is the same paper, comparing to the programs in the United States who have more than 25% Hispanics and who have the top tertile of volume. You can see that in no program is there a significant improvement in disparity. And you'll see one isolated number of 215, but the N was one transplant. So, okay. So what is the potential impact? So if you were to conduct a thought experiment and implement some of these practices, you could anticipate from a kidney transplant perspective, again, that even if you did 10% of programs adopted it, you would see a significant increase in living donor kidney transplantation. So we're going to move to liver finally, which is an area that I'm more comfortable with. And you can see here that Hispanics are the minority with the highest transplants. And surprisingly, maybe the living donors, they're quite active living donors as well. Looking at our programmatic statistics and just in the city of Chicago, you can see that the transplant program initiative in the kidney transplants was initiated, as I said, in 2005. And then the liver transplant initiative was a bit later, it started in 2010. But I will say that the people that are critical to our program right now were actually already there. And so I think that a lot of the uptick is related to the use of many of the same people in both programs. So if you were to compare Hispanic liver transplant program statistics before, so in the 2002 to 2009 era, to the 2011, 2018 era, you can see that there's a significant difference between what we did in Hispanics and non-Hispanics. So wait list additions were 54% compared to national statistics, and these are all data from OPTN, of 25%. Liver transplants, as far as liver, I'm sorry, that was wait list additions. As far as liver transplants, specifically looking at living donors, we had an 88% increase and a 13% nationally. And deceased donor liver transplants also increased for the reasons that I stated before. And kidney are also relevant to liver. Again, the ability to have more nuanced conversations with patients about deceased donation options as well. So if you were to look at this a little bit differently, and these are data from the most recent SRTR numbers, you can see that on the left-hand column, you can see the percentage of Hispanics on the wait list. And this, I will say, is representative of all of the programs in the United States that do Hispanic live donor transplants. I selected these programs because they have very similar regional distribution. Just for perspective, the ratio for the United States overall for live donor to deceased donor is .44. So what's interesting, I think, about what's happened with the implementation of our program is that we've seen a very significant increase in the ratio of Hispanic live donor donation to deceased donor donation. And we're the only program that has a ratio actually above one. So 1.88 is the ratio at Northwestern. Now interestingly, UCSF has a Spanish-speaking hepatologist, I believe, social workers. And they actually have somewhat not a formal program, but they have a lot of support in that regard. And it would be interesting to see how much of that applies to changing this ratio. So in conclusion, Hispanic U.S. population is increasing significantly and Hispanics are overrepresented in chronic liver disease and kidney disease. There shouldn't be a question mark there. Sorry. Lower rates of living donation are present for both kidney and liver. Access to liver transplantation is most closely impacted by insurance coverage, but JC can maybe address some of those questions afterwards because we have a system in Illinois that allows for that to not be an issue in those who do not have insurance coverage. Rates of Hispanic transplants track with the local population density, irrespective of the presence or absence of a Hispanic transplant program. I didn't show you those data. They're present in SRTR, but where the difference really, really happens in liver transplantation is in live donor liver transplantation. So the rates in live donation are significantly impacted by the presence of a Hispanic program and programmatic changes can definitely impact attitude, satisfaction, donation rates, and potentially outcomes if you were to implement them. So with that, I'd like to thank the program at Northwestern. These are the members of our Hispanic transplant team and most notably Juan Carlos Caicedo who also has an R01 to specifically look at this and decrease disparities in Hispanic patients. Thank you.

Liver transplantation

Hispanics

Healthcare disparities

Cultural competence

Chronic liver disease