ORGAN DONATION AND ASIAN AMERICANS – 1

• In 2011, Asian Americans made up 5.8 percent of the national population.

• Diabetes and heart disease are less prevalent among Asian Americans than other minority groups. Even so, they suffer significantly from liver disease and hepatitis. These conditions are known to put the patient at risk for organ failure.

• The number of organ transplants performed on Asian Americans in 2012 was only 15% of the number of Asian Americans currently waiting for a transplant. The number of transplants performed on White Americans was 27% of the number currently waiting.

• While 6.6% of the total candidates currently waiting for transplants are Asian American, they comprised 3% of organ donors in 2012.

ORGAN DONATION AND ASIAN AMERICANS – 2

Transplants performed in the U. S. by

Recipient Ethnicity

RECIPIENT  ETHNICITY	2012	% OF TOTAL   2012 TRANSPLANTS
Asian American	1,132	4.8%
White	13,965	59.8%
Total Transplants  All Ethnicities	23,362	100%

Source:  HRSA U.S. Organ Procurement and Transplantation Network (OPTN). Based on OPTN data as of January 18, 2013. http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp

ORGAN DONATION AND ASIAN AMERICANS – 3

U. S. Organ Donors Recovered, 2012

DONOR TYPE	# of ASIAN AMERICAN DONORS	ASIAN AMERICAN  % of ALL DONORS	# of  WHITE DONORS	WHITE  % of ALL DONORS
Living	183	3.7%	3,450	70.6%
Deceased	181	2.7%	4,480	66.1%
Total Donors	364	3.1%	7,930	68.0%

Source:  HRSA U.S. Organ Procurement and Transplantation Network (OPTN). Based on OPTN data as of January 18, 2013. http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp

ORGAN DONATION AND PACIFIC ISLANDERS – 1

• In 2011, Native Hawaiian/Pacific Islanders made up 0.4 percent of the national population.

• Hawaiian and Pacific Islanders are often categorized simply as Asian

Americans, which often fails to acknowledge the health disparities that exist within this general term.

• In Hawaii, Native Hawaiians are more likely than Whites living in Hawaii to be diagnosed with diabetes and cardiovascular disease.

• Native Hawaiian/Pacific Islanders have higher obesity rates, and also are seven times more likely to be diagnosed with chronic liver disease, as compared to non-Hispanic Whites. These conditions are known to put the patient at risk for organ failures.

ORGAN DONATION AND PACIFIC ISLANDERS – 2

Transplants performed in the U. S. by

Recipient Ethnicity

RECIPIENT  ETHNICITY	2012	% OF TOTAL   2012 TRANSPLANTS
Pacific Islander	61	0.3%
White	13,965	59.8%
Total Transplants  All Ethnicities	23,362	100%

Source:  HRSA U.S. Organ Procurement and Transplantation Network (OPTN). Based on OPTN data as of January 18, 2013. http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp

ORGAN DONATION AND PACIFIC ISLANDERS – 3

U. S. Organ Donors Recovered, 2012

DONOR TYPE	# of PACIFIC ISLANDER DONORS	PACIFIC ISLANDER % of ALL DONORS	# of  WHITE DONORS	WHITE  % of ALL DONORS
Living	7	0.1%	3,450	70.6%
Deceased	17	0.2%	4,480	66.1%
Total Donors	24	0.3%	7,930	68.0%

DISPARITY IN BONE MARROW TRANSPLANTATION – 1

• Compared to organ transplants, bone marrow donations need to be even more genetically similar to their recipients.

• To find a marrow match for anyone is hard. Even within one’s own family, the chances of finding one are only about 30%.

• According to the World Donor Marrow Association, while two out of three Caucasians find a match, the chances of a patient from another ethnic background can be as low as one in four.

• The global registry is still disproportionately represented by the U.S., U.K. and Germany — all predominantly Caucasian countries.

DISPARITY IN BONE MARROW TRANSPLANTATION – 2

For a multi-racial person, the chances are usually even worse. Athena Mari Asklipiadis, the founder of the California-based Mixed Marrow, one of the only outreach groups devoted to recruiting mixed race donors, says “the numbers are quite staggering …

People compare it to winning the lottery.”

DISPARITY IN BONE MARROW TRANSPLANTATION – 3

The Be The Match Registry has :

• 10 million donors in the registry.
• Facilitated 50,000 transplants.

Racial Distribution of Donors in the Registry:

• Caucasians – 71%
• African American – 7%
• Hispanic – 5%
• Asian/Pacific Islander – 7% (South Asian – 3%)
• Native American – 0 .2%
• Other/Multiracial – 6%

DISPARITY IN BLOOD DONATION

• 5% of the total eligible population in the United States gives blood. However, less than 1% of the Asian community donates blood.

• Some patients of Asian descent require a closer blood match than that provided by the ABO positive/negative blood typing.  For this reason, it is extremely important to increase the number of available blood donors from the Asian communities.

• Certain blood types are unique to specific racial and ethnic groups.  For example the majority of Asian donors are type B.

• According to the National Institutes of Health, nearly 14 million units of whole blood and red cells are required every year.

UNDERSTANDING DISPARITY

• The well-known gap between organ-donor supply and demand in the United States is particularly acute for Asian Americans.

• Lower participation in organ donation programs by Asian Americans has been hypothesized as one explanation for this observation. This study finds that, relative to European Americans, Asian Americans hold more negative attitudes toward and participate less frequently in a large, urban organdonor program.

• Among racial and ethnic minorities, lower consent rates may be due, in part, to personal, cultural, or religious beliefs.

• Miscommunication, misinformation, or mistrust among racial and ethnic minorities.

WORK BEING DONE TO ADDRESS DISPARITY

• A variety of Federal and NGOs are working  to remove the disparity.

• Limited success has been achieved so far.

NATIONAL INSTITUTES OF HEALTH

• “Part of the solution to the disparity in transplantation is to ensure that providers refer appropriate patients for transplant evaluation as soon as they’ve been diagnosed with kidney failure.”

• “It’s also important that more African-Americans, AsianAmericans and Hispanics register as organ donors and talk  with loved ones about doing the same to Increase the pool of kidneys available for transplantation.”

Griffin P. Rodgers, M.D., Director of the National Institute of

Diabetes and Digestive and Kidney Diseases.

WOMEN IN GOVERNMENT: KIDNEY HEALTH POLICY RESOURCE CENTER

• Preliminary measures to encourage organ donation among minority populations include:

• Raising awareness about organ shortages affecting minority

populations.

• Improving approaches used by healthcare physicians to discuss the issue of organ donation with their minority patients.
• Encouraging minority patients to become registered donors in their respective states.

• Asian Americans found it hard to believe that Asians wait longer than Caucasians for an organ transplant.

                                                                                                          J Health Poor Underserved, 14(2): 182.

BLOOD DONATION DRIVE ACROSS HINDU MANDIRS

• 600 Hindu-American temples participate in blood and bone marrow drives.
• 2500 units of blood and bone marrow added to the national pool yearly.
• Most Indian-American festivals have a booth for this. • http://hindusgiftoflife.org/

SOUTH ASIAN MARROW ASSOCIATION OF RECRUITERS

• Focus is the South Asian community.
• Ensures that no global citizen is ever denied a lifesaving marrow/blood stem cell transplant solely due to the lack of a genetically specific donor.

SAMAR has:

• Worked with 300 patients.
• Conducted almost 3000 registry drives in 42 states.
• Facilitated 85 actual marrow/blood stem cell transplants from its recruitment efforts for patients in 14 countries around the world.
• Recruited over 80,000 potential donors.
• www.samarinfo.org

Details of HLA

• HLA=Human Leukocyte Antigens which are found on the surface of WBC

• Function of HLA is to help identify and in turn, fight “foreign stuff”

• 2 types of HLAàsome for MHC I and MHC II (MHC genes are on chromosome 6)

• Most important HLA are types A, B (MHC I) and DR (MHC II)

• Remember MHC I present antigens to cytotoxic T cells and MHC II use antigen-presenting cells for helper T cells

• For this reason, it is important to have closely matched HLA between donor and recipient to avoid rejection—ie. To avoid donor cells being presented to recipient immune system by MHC for destruction

NATIONAL POLICY CHANGE REDUCES RACIAL DISPARITY IN KIDNEY TRANSPLANTS

• A national transplant policy change designed to give African-American patients greater access to donor kidneys has sliced in half the racial disparities that have long characterized the allocation of lifesaving organs.

• African-Americans and whites typically aren’t HLA matches, particularly one subtype known as HLA-B.

• Before 2003, an African-American patient who joined the kidney transplant list on the same day as a white patient would have a 37 percent smaller chance than a white counterpart of getting a transplant. In recent years, the researchers say, that percentage has dropped to 19.

• The Hopkins researchers attribute the drop to a 2003 decision by the United Network for Organ Sharing (UNOS) to a change in the relative priority given to tissue matching.

• If you match by HLA, you might get only slightly better outcomes now.       A minimal sacrifice in outcomes has meant a big gain in equity.

INTERNATIONAL WORK: REMOVING DISPARITY

• Sevak Project is based on the US Navy model of Independent Duty Corpsman.

• 26 villages were selected from the state of Gujarat, India.

• 12 villages in Guyana, South America.

• The average population of the village was about 1500-2500.

• Sevaks were identified with average education of 12^th grade and above.

 

SEVAK: Sanitation and Health, Education in Village Communities through

Improved Awareness and Knowledge of Prevention/Management of Diseases and Health Promotion (www.sevakproject.org)

 

SEVAK – 1

• Sevaks occupation is farming, college or unemployed but had to live in the village to participate in the project.

• The sevaks are in their respective villages doing screening for diabetes and hypertension along with recording other health care problems.

• They are required to educate the village folks about the merit of having house toilet and smokeless stoves ventilated to the outside.

SEVAK – 2

• This is a three year pilot project to demonstrate that preventive model works in keeping farmers at work without illness. Identifying those with diabetes and hypertension will prevent complications.

• Such a model has not been tried as a system.

• The success of this model is very important as it can be applied in any developing country.

SMOKELESS STOVE

INSULIN COOLER

CONSTRUCTION OF TOILET

SEVAK RESULTS GUYANA, SOUTH AMERICA

SUMMARY – 1

• Ever since the first kidney transplant was performed in 1954, there has been a growing chasm between supply and demand when it comes to transplant organs, about 80 percent of which are kidneys.

• The number of people waiting in the United States for a renal transplant has more than quintupled over the past two decades, from 16,294 in 1989 to 85,473 today. Every day 92 people are added to the national waiting list, and 12 people die waiting.

• Consent was significantly more likely to be obtained from white patients (77.0 percent), compared to Hispanics (67.5 percent), “other races” (59.0 percent), blacks (54.9 percent), and Asians (48.1 percent).

• Consent was also less likely to be obtained from minority populations for bone marrow and blood donation.

SUMMARY – 2

• The Federal Asian Pacific American Council (FAPAC) can increase awareness to increase organ, bone marrow and blood donation.

• Fund research into causes of disparity in donation.

• Encourage preventative measures such as early detection of diabetes, hypertension and prevention of obesity and alcoholism.

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Rahul M. Jindal, MD, PhD, MBA 
Transplant Surgeon, Walter Reed National Military Medical Center
Professor, Department of Surgery & Division of Global Health, Uniformed Services University of Health Sciences
Clinical Professor, Departments of Surgery & Medicine, The George Washington University
___________
Commissioner, Governor’s Office on Service and Volunteerism (www.gosv.maryland.gov)
Commissioner, Montgomery County Office of Human Rights (http://www.montgomerycountymd.gov/humanrights/)

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Tel: 718-916-9241 ​