Disparities in Transplantation Caution: Life is not fair.

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1 Disparities in Transplantation Caution: Life is not fair. Tuesday October 30 th 2018 Caroline Rochon, MD, FACS Surgical Director, Kidney Transplant Program Hartford Hospital, Connecticut

2 Outline Differences vs Disparities Minorities Access to Solid Organ Transplantation Minorities outcomes with Solid Organ Transplantation Disparities in Kidney Transplantation Racial disparities in Access Racial disparities along the continuum of care Racial differences in risk factors Racial disparities in outcomes Gender Disparities in access to ktxp Disparities in Liver Transplantation Racial disparities in access Racial disparities in outcomes Geographical disparities in access Gender disparity in access Disparities in Heart Transplantation Summary Potential Solutions

3 Differences vs Disparities

4 Differences vs Disparities: defining the problem Given observed differences in the incidence of end organ disease, transplantation rates and outcomes, the question becomes: which health differences, if any, constitute health disparities? Differences: defined as consistent and measurable variations in health outcomes. Disparities: defined as differences which are unnecessary and avoidable, but in addition are considered unfair and unjust.

5 Differences vs Disparities: why we care? Differences stemming from the basic structure of society (gender, class, race, etc.) or resulting from the social division of labor benefiting the advantaged at the expense of the disadvantaged are deemed to be unjust or unfair. Equity in health can be seen as the unbiased, fair opportunity of all to attain their full health potential

6 Differences vs Disparities: ESRD for example The prevalence of hypertension and diabetes in AA can partially be attributed to genetic susceptibility When considering the total gap in CKD/ESRD between blacks and whites, the fraction attributed to this biological variation is considered a difference stems from biological factors in which fairness plays no role. Known disparities stem from being less likely to be referred to nephrologists, less likely to be deemed acceptable candidates for transplantation by their physicians, more likely to experience incomplete workups, more likely to wait longer for transplantation, more likely to receive expanded criteria kidneys, less likely to encounter adequate postoperative care, and less likely to enjoy long-term graft survival.

7 Minorities Access to Transplantation

8 Minorities Access to Transplantation Services High-income patients are more likely than low and middle-income patients to be listed for renal transplantation, often before the need for dialysis. Higher functional status? Better support system? Higher education? Better transportation for appointments and testing? Minority patients experience low referral rates to kidney and liver transplant centers (even if expressing a preference for transplantation), fewer completed evaluations and fewer become candidates after screening than Caucasian patients Referral rates for initial evaluation for transplantation: AA 90.1% vs. whites 98% Placement on the transplant waitlist rates: AA 71% vs. whites 86.7% Counseling may be complicated by data that suggest that African Americans and Native Americans fare better (initially) than non-hispanic whites on dialysis. These factors may reduce the impetus for healthcare providers and patients to pursue transplantation.

9 Transplant Outcomes by Race Outcomes of transplantation are inferior in minority recipients compared to the general population The etiologies of inferior transplant outcomes for ethnic minorities are unclear. Lifestyle and general health issues including obesity and nutritional status have exaggerated impacts on minority populations and transplant outcomes Prevalence of Obesity, and it s metabolic consequences, is greater in all minorities than in whites.

10 Minorities have reduced access to Transplantation Services: ESRD ESRD= Medicare Entitlement (thanks to medical reimbursement policies). It is often the first time minorities encounter the healthcare system. Optimal ESRD/ transplant care comes when transplant referrals occurs at the CKD level Moreover, being followed for CKD may lead to delay in progression to ESRD Lack of private health insurance is a major barrier to optimal transplantation care (may be a surrogate for other socioeconomic factors) Those without insurance avoid frequent interactions with the healthcare system perception that they are non-compliant or disinterested and delaying preventative care. Minorities have reduced access to preventative medical care (low private health insurance coverage)

11 Minorities have reduced access to Transplantation Services: ESRD Ethnic minorities, notably Hispanic Americans, are less likely than non-hispanic White Americans to possess health insurance, notably among the working poor. African Americans are less likely to possess private or employment-sponsored insurance and they are more likely to be covered by Medicaid/publicly funded insurance. 33% of American Indians and Alaskan natives lack health insurance and less than half have employment-based insurance, while 25% have either Medicaid, are uninsured or rely upon only Indian Health Services services. As a result, the majority of eligible Native Americans in urban or nonreservation areas have reduced access to medical care

12 Disparities exist along the continuum of care Increased attention to health disparities places the onus on the transplant community to understand distinctions between differences and disparities, and act to identify and mitigate disparities at all stages of care.

13 There are racial differences in risk factors for ESRD

14 High incidences of Comorbid conditions/ Risk Factors The excess burden of kidney disease in minority populations reflects, in part, the higher rate of known medical and environmental risk factors for ESRD and for other end-organ failure. genetic predisposition, diet, lifestyle, Type II diabetes mellitus and hypertension and delays in receiving appropriate treatment In the Native American dialysis population, 73% are diabetic 83% are hypertensive In African Americans: hypertension is prevalent and less well controlled by conventional medical therapies

15 ESRD incidence and waitlist composition by Ethnicities 4x 2.5x 2x African American, Hispanic and Native American patients remain underrepresented on kidney waiting lists relative to the composition of the chronic kidney disease African Americans comprise 35% of the Medicare dialysis population. population The incidence of ESRD in African Americans is 4-fold higher than that of Caucasian. Native Americans among Zuni Indians in the American Southwest: renal disease is 18-fold more prevalent than for Caucasians. Hispanic Americans have 2-fold the rate of ESRD of non-hispanic Caucasians.

16 It takes longer for minorities to get listed for kidney transplant Once listed, they get transplanted at a lower rate AA constitute 35% of the waitlist but only 16% of the DDTXP

17 African American patients are 70% less likely than Caucasians to receive pre-emptive transplantation before dialysis or to receive a living donor kidney. Despite constituting 37% of dialysis patients, Blacks receive just 12% of LDKT

18 Disparities in Transplantation Outcomes

19 Graft and Patient Survival by ethnicity Graft survival is worse in AA than other race post ktxp Patient survival however, is worse in whites This may be due to the fact that AA are known to fare better on dialysis than whites They are usually also younger at the time of ESRD diagnosis

20 Gender Disparities in Kidney Transplant

21 Disparities in access to kidney transplant: Gender Overall, women are having 11% less Access to Transplant than men Young woman have same access to the waitlist as young man Young woman have same access to transplant as young man women older than 75yr have 59% less Access to txp than men of the same age At all ages, women derived a survival benefits from transplantation equivalent to or greater man older woman have 59% less access to the waitlist than men Young woman have same access to LD transplant as young man older woman have 62% less access to the LD transplant than men Sub analysis by age, shows that women had 7% less access to for every decade increase in age OLDER WOMAN HAVE THE WORSE ACCESS TO KIDNEY TRANSPLANT

22 Disparities in access to kidney transplant: Just get them listed Woman over 65 yo have much worse access to transplant and wait longer to gain access than man of the same age Once listed for transplant Woman over 65 yo have the same transplant rate as man of the same age

23 Beyond Kidney transplant

24 Disparities in Liver Transplant: Race Rates of referral for liver transplantation at a Veterans Affairs medical center were adversely impacted by factors including: older age (adjusted OR 0.31; 95% confidence interval [CI] , p = 0.01) alcoholic liver disease (adjusted OR: 0.10; 95% CI , p = 0.01) Black race (OR 0.15; 95% CI 0.02 African American liver transplant recipients tend to be younger and sicker than white candidates, more likely to die or become too ill for OLT while waiting (p < 0.001), and are less likely to receive OLT within 4 years (p < 0.001) Once waitlisted, Hispanics, African Americans, Asians and Other Race candidates have unadjusted transplantation rates from the time of wait listing that are 35%, 43%, 41% and 39% lower, respectively, than non- Hispanic whites.

25 Disparities in Liver Txp: Race Risk of death on the waitlist no longer different with MELD Transplant rate no longer different with MELD the present allocation system is achieving a critical goal of ensuring more equitable organ allocation by race

26 Disparities in Liver Txp: Race In the MELD era, there is no difference in transplant rates between African Americans and Whites. There are differences in transplant rates by regions however, and demographics do change by regions UNOS is currently working on eliminating the geographic disparities

27 Disparities in Liver Txp: Geography Transplant rates vary enormously by regions The country is divided in 11 areas for organ distribution There is a work force tasked with eliminating this disparity by Spring 2019.

28 Disparities in Liver Txp: Gender Post MELD, women have a higher risk than men of dying on the list. Post MELD, women have a lower transplant rate than men Women have a 30% increased odds of death or becoming too sick for liver transplantation compared with men after the introduction of the MELD allocation system Women may be disadvantaged with the MELD score due to lower creatinine values.

29 Disparities in Heart Transplant For heart recipients, the probability of transplantation within 1 year after listing is similar for all ethnic groups, as is the probability of death on the waiting list There are gender differences in heart transplant recipients outcomes: Woman are younger than man, Woman have more episodes of rejection However, there is no gender differences in mortality.

30 Racial Disparities in Heart Transplant outcomes There are significant differences in recipient characteristics between races. Blacks: younger, higher proportion of women, higher average serum creatinine level, higher percentage of UNOS status 1, More idiopathic dilated cardiomyopathy. On average, blacks were transplanted at centers with lower OHT volumes. Overall, blacks had the highest mean donor risk index.

31 Racial Disparities in Heart Transplant outcomes A UNOS study of OHT patients found that blacks, but not other races, were at increased risk of 1-year mortality as compared with whites Another UNOS analysis demonstrated that blacks had an 11.4% absolute decrease in 10-year survival compared with whites

32 Racial Disparities in Heart Transplant outcomes Another factor in factor playing a role in racial disparities in Outcomes of Adult Heart Transplantation: A higher proportion of blacks are transplanted at centers that performed worse than projected; the majority of black recipients are transplanted at centers with an OE ratio >1, whereas the majority of whites and Hispanics were transplanted at centers with ratios <1 It is difficult to account for all socioeconomic factors involved we also have to question risk adjustment...

33 Summary Minorities and White do not have similar access to transplantation not do they have the same outcomes post transplantation. There are differences and disparities at the source of these discrepancies For kidney transplantation, there are racial differences in risk factors, but there are also racial disparities across the continuum of care leading to discrepancies in access to kidney transplantation. There are racial and ethnic differences in kidney transplant outcomes There are gender discrepancies in access to kidney transplant, older woman have the worse access. Once they make it to transplant, their outcomes are similar to their male counterparts. For liver transplantation, there are racial disparities in the rate of referral to transplant centers and once wait listed, there are possible racial disparities in transplant rates; it is possible that the disparities are linked to geography more than race. the 2002 change in liver allocation has improved numerous racial disparities in liver transplantation. There are gender disparities in access to liver transplantation. Woman have a lower transplant rate and a higher risk of dying on the list than man. There seems to be no racial or gender disparities in access to heart transplantation but there are racial differences in outcomes.

34 The Future We need to continue studying differences and deduce disparities in transplantation to continue our journey towards fair equitable care UNOS continuously adjusts its allocation systems and regulations to reduce discrepancies in 2004 changes in the organ allocations based on HLA increased access to kidney transplant for AA in 2014, improvement in organ allocated to Blood group B patients, decreased wait time for numerous minorities Through education and psychosocial interventions, we can help minorities control racial and gender specific risk factors as well as promote early transplant referrals and healthy post transplant lifestyles Now that we have entered the #metoo era, we need empower woman to seek healthcare early, as they perceive themselves as care takers and refuse the care seeker role, to their peril

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36 As Applicable Your personal or local Contact info here

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