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T H E F A C T S A B O U T

Organ Donor Registration in Upstate New York

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Number and percentage of adults who are registered organ and tissue donors, upstate New York, New York state and United States, 2014

8363-14CC

New York State United States

48%(117 million)

22%(3.4 million)

Upstate New York

31%(1.2 million)

29%(240,000)

26%(159,000)

32%(268,000)

33%(398,000)

32%(127,000)

Central New York Region

Finger Lakes Region

Southern Tier Region

Utica/Rome/North Country Region

Western New York Region

Source: New York Alliance for Donation. “NYS Donate Life Organ and Tissue Donor Registry.” March 3, 2014. Web. 11 Apr. 2014 http://www.alliancefordonation.org/sites/alliancefordonation.org/files/2014_February_Enrollment%20Data.pdf

Note: Throughout this report, upstate New York refers to the New York counties highlighted on the map above.

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Sunmer 2014

Continued advances in medical technology, surgical techniques and anti-rejection drugs have placed organ and tissue transplants among the most remarkable success stories in modern medicine. Yet despite efforts to educate the public on the importance of consenting to be a donor, the need for transplantable organs and tissues remains significantly greater than the supply.1

This report compares organ and tissue donor registration rates among adults 18 and older in upstate New York and its regions to corresponding statewide and national figures.

It also shows the number of individuals currently on the organ and tissue transplant waiting list main-tained by the United Network for Organ Sharing (a private, nonprofit organization that contracts with the federal government to manage the nation’s organ transplant system) and the number of people who died while waiting for transplants.

The report highlights recent efforts made by New York state to increase donor registrations among its residents and concludes with a resource guide to help individuals learn more about organ and tissue donations.

Key Findings

• Fewer than half of adult Americans are registered organ and tissue donors, and less than one-third of adults in upstate New York are registered donors.

• New York state has the third-lowest donor registration rate in the country, yet it’s ranked third-highest among all states by the number of residents in need of a transplant.2

• New Yorkers make up about 10 percent of the waiting list maintained by the United Network for Organ Sharing, a private, nonprofit organization that contracts with the federal government to manage the nation’s organ transplant system.3

• Today, nearly 123,000 Americans are on waiting lists for organ transplants.4 Of those on waiting lists, nearly 11,000 are New Yorkers.5

• Nationally, more than 6,000 Americans died while waiting for transplants in 2013.6 More than 500 New York state children and adults died because of the shortage of donated organs in that same year.

• On average in the United States, 18 people die each day while waiting for a suitable donor.7

About this report

A nonprofit independent licensee of the Blue Cross Blue Shield Association

Donate Life America, a nonprofit alliance of national partners and state teams invested in initia-tives to increase donor registrations nationwide, has collected data on enrollments in state donor registries since 2007.

According to the organization’s most current quarterly data summary, 117,000,000 donors are registered nationwide.8

In New York state, 22 percent of adults are registered donors. State registration percentage rates vary significantly, with Montana achieving an 84 percent sign-up rate and Puerto Rico reaching only a 17 percent sign-up rate.

The table below reflects the most recently reported organ donation registration rates for all 50 states, the District of Columbia and Puerto Rico.

Many Americans are in need of transplants, but a shortage of donors exists

* Estimated

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State Registered Donors

Montana 84%

Alaska 83%

Washington 80%

Colorado 74%*

Oregon 73%

Utah 72%

Iowa 72%

Wyoming 71%*

Indiana 70%

Missouri 69%

New Mexico 68%*

North Dakota 66%

Oklahoma 63%

Minnesota 63%

Idaho 63%

Louisiana 63%

Georgia 62%

Alabama 61%

Ohio 60%

North Carolina 59%

Arkansas 59%

Wisconsin 58%

Virginia 58%

Maine 58%

South Dakota 55%

Illinois 55%

State Registered Donors

Maryland 54%

Hawaii 53%

Delaware 53%

Massachusetts 53%

Rhode Island 52%

New Hampshire 52%

Nebraska 49%

Florida 48%

Washington DC 48%

Kansas 48%

Pennsylvania 45%

Arizona 45%

Michigan 45%

Connecticut 42%

Kentucky 42%

Nevada 39%

Tennessee 38%

California 37%

West Virginia 36%

South Carolina 36%

New Jersey 34%

Mississippi 28%

Texas 24%

New York 22%

Vermont 18%

Puerto Rico 17%

All 48%

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• New York state has the third-lowest donor registration sign-up rate (22 percent). Puerto Rico has the lowest donor registration sign-up rate (17 percent), and Vermont has the second-lowest sign-up rate (18 percent).

• Montana has the highest donor registration sign-up rate (84 percent), followed by Alaska with 83 percent and Washington with 80 percent.

• 24 states each have more than 2 million enrolled donors.

• 32 states each have at least 50 percent of the adult population enrolled as donors.

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Number of registered donors, upstate New York (by county and region), 2014

Upstate New York registration rates lower than national average

County Number of Enrollees

Percent of Enrolled Adults

Cayuga 17,516 28%

Cortland 12,543 32%

Jefferson 32,394 37%

Lewis 7,443 36%

Onondaga 112,904 31%

Oswego 26,695 28%

St. Lawrence 22,182 25%

Tompkins 36,608 43%

Central New York Region 268,285 32%

County Number of Enrollees

Percent of Enrolled Adults

Livingston 16,067 31%

Monroe 162,316 28%

Ontario 31,557 37%

Seneca 4,552 16%

Wayne 19,605 27%

Yates 6,378 33%

Finger Lakes Region 240,475 29%

County Number of Enrollees

Percent of Enrolled Adults

Broome 49,029 31%

Chemung 24,588 36%

Chenango 10,471 27%

Schuyler 4,666 32%

Steuben 25,267 33%

Tioga 13,172 33%

Southern Tier Region 127,193 32%

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Summer 2014

County Number of Enrollees

Percent of Enrolled Adults

Allegany 11,971 31%

Cattaraugus 23,134 38%

Chautauqua 36,970 35%

Erie 233,342 32%

Genesee 15,978 34%

Niagara 62,816 37%

Orleans 2,802 8%

Wyoming 11,190 33%

Western New York 398,203 33%

Source: New York Alliance for Donation. “NYS Donate Life Organ and Tissue Donor Registry.” March 3, 2014. Web. 11 April 2014. http://www.alliancefordonation.org/sites/alliancefordonation.org/files/2014_February_Enrollment%20Data.pdf

• Upstate New York’s donor registration sign-up rates range from a high of 33 percent in the Western New York region to a low of 26 percent in the Utica/Rome/North Country region.

• The sign-up rate in each upstate New York region is higher than the New York state average of 22 percent, but is significantly lower than the national average of 48 percent.

• Tompkins County in the Central New York region has upstate New York’s highest enrollment rate (43 percent), which still falls below the national average. Orleans County in the Western New York region has the lowest enrollment rate (8 percent).

County Number of Enrollees

Percent of Enrolled Adults

Clinton 20,386 31%

Delaware 9,747 25%

Essex 10,689 34%

Franklin 12,209 30%

Fulton 11,635 27%

Hamilton 1,332 33%

Herkimer 15,572 31%

Madison 17,540 30%

Montgomery 9,688 25%

Oneida 34,112 19%

Otsego 15,726 31%

Utica/Rome/North Country 158,636 26%

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Spring 2014

How many people are on the transplant waiting list? How long is the wait?

Source: U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. http://optn.transplant.hrsa.gov/data/. See methodology section for details.

Approximately

123,000 Americans are currently on the United Network

for Organ Sharing waiting list.

Approximately

17,000 of those individuals have been on the

waiting list for five years or longer.

Nearly

5,000 Americans became too sick to remain on the waiting list

in 2013.

6,100 Americans died

while waiting for transplants in 2013.

10,500 New Yorkers

are currently on the waiting list.

1,500 New Yorkers

have been on the waiting list for five

years or longer.

381 New Yorkers

became too sick to remain on

the waiting list in 2013.

539 New Yorkers

died while waiting for transplants

in 2013.

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No data available for Alaska, Idaho, Montana and Wyoming.

The table below reflects the number of individuals currently on the transplant waiting list for all 50 states, the District of Columbia and Puerto Rico.

Number of individuals currently on the transplant waiting list by state:

State All Organs

California 21,824

Texas 11,789

New York 10,510

Pennsylvania 8,514

Illinois 5,412

Florida 5,366

Georgia 4,325

Alabama 3,905

Ohio 3,356

Michigan 3,346

Virginia 3,322

North Carolina 3,306

Maryland 3,260

Minnesota 3,252

Massachusetts 3,185

New Jersey 3,093

Tennessee 2,684

Colorado 2,593

Arizona 2,467

Wisconsin 2,334

Washington 2,100

Louisiana 1,877

Missouri 1,843

Indiana 1,488

State All Organs

District of Columbia 1,460

Connecticut 1,398

Kentucky 958

Oklahoma 883

Oregon 848

South Carolina 841

Utah 805

Iowa 581

Kansas 564

New Mexico 504

Puerto Rico 457

Hawaii 447

Mississippi 441

Delaware 429

Nebraska 392

South Dakota 337

Arkansas 313

Rhode Island 240

North Dakota 143

West Virginia 141

New Hampshire 136

Vermont 94

Maine 90

Nevada 80

All States 122,877

New York State Percentage of Need by Organ

Kidney

Liver

Pancreas

Kidney/Pancreas

Heart

Heart/Lung

Lung

Intestine

80%

13%

1%

2%

3%

0%

1%

<1%

Source: U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network.http://optn.transplant.hrsa.gov/latestData/. See methodology section for details.

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Summer 2014

New York promotes organ and tissue donation to address shortage

Over the past decade, New York state has progressively become more active in encouraging registration of potential donors. Recent laws boosting organ and tissue donation registrations include the following:

1999 2008 2012 2014

The Life Pass It On Registry was the first

statewide registry database in New York.

It was an intent registry, which recorded an

individual’s intent, or wish to be an organ and tissue

donor. Upon the death of the potential donor, consent of next of kin is required for donation to proceed. Individuals were no longer able to join the intent registry beginning in July 2008,

when New York launched a new registry of consent. Individuals on the intent registry should re-enroll in the consent registry to ensure that their wishes

are honored.

1999 2008 2012 2014The New York State

Donate Life Organ and Tissue Donor Registry was

created to allow donors to give legal consent. The New York state

consent registry allows an individual to legally consent to have his or her organs, tissues and

eyes donated upon his or her death. Next of kin or authorized persons are informed of the donor’s

decision and given information about the donation process, but

their consent is not required for the donation

to proceed, and they cannot stop the donation.

1999 2008 2012 2014Lauren’s Law promotes

Donate Life RegistryWith the passage of this

law, New York state residents applying for, or renewing, a driver’s license or non-driver ID

card are required to respond to the organ

donor enrollment question by selecting

either “yes” to enroll in the Donate Life Registry or “skip this question” to decline. Before the law took effect in October 2013, the organ donor enrollment question

was optional.

In 2012, the New York State Department of

Motor Vehicles also began allowing online organ

donor registration through My DMV, its online portal.

1999 2008 2012 2014New York state expands opportunities to enroll in

Donate Life Registry The New York state

budget included language authorizing

the Department of Health to contract with a

nonprofit organization to run the Donate Life Registry, creating an

interagency workgroup dedicated to increasing organ, eye and tissue

donation and allowing enrollment in the registry by means of an electronic

signature.

How to sign up to be an organ donor

Sign up when you apply for or renew

your New York state driver’s license or

non-driver ID card.

2Sign up when you register to vote.

1If you already have a

driver’s license or it’s not time to renew it, sign up online through the New

York State Department of Motor Vehicles website at

https://my.dmv.ny.gov

3Sign up by completing

a paper registration form available at

https://apps.health.ny.gov/professionals/patients/dona-tion/organ/DonorRegistra-

tion.action

4

Source: New York Alliance for Donation. Legislation. Web. 20 June 2014

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New York’s federally designated nonprofit organ procurement organizations offer information about a broad range of transplant-related issues, including:

• How to register to be a donor,

• Additional overviews of organ and tissue donation,

• Transplantation myths and frequently asked questions,

• Religious viewpoints,

• The donation process,

• How to talk to your family about donation,

• Gift-of-life stories,

• Informational materials and expert speakers, and

• How to get involved as a volunteer.

Additional information is available from individual organ procurement organization websites.

New York State organ procurement organizations serving upstate New York

Finger Lakes Donor Recovery Network Corporate Woods of Brighton Bldg. 30 Suite 220 Rochester, NY 14623 Phone: (585) 272-4930 or (800) 810-5494 www.donorrecovery.org

Center for Donation & Transplant 218 Great Oaks Boulevard Albany, NY 12203 Phone: (518) 262-5606 or (800) 256-7811 www.cdtny.org/

Upstate New York Transplant Services 110 Broadway Buffalo, NY 14203 Phone: (716) 853-6667 or (800) 227-4771 www.unyts.org/

New York Organ Donor Network 460 West 34th Street, 15th Floor New York, NY 10001 Phone: (646) 291-4444 www.donatelifeny.org

For more information

These websites offer additional information about organ donations and related issues:

New York Alliance for Donation www.alliancefordonation.org/

Donate Life America www.donatelife.net

Organ Procurement and Transplantation Network http://optn.transplant.hrsa.gov/optn/

The Department of Health and Human Services www.organdonor.gov

New York Health Care Proxy Form and Organ Donation

Individuals can use the New York Health Care Proxy form to indicate their desire

to be an organ and tissue donor. The form is a legal document that lets

individuals designate an “agent” to make decisions about medical care if they can no longer make decisions and speak for

themselves. While it’s important to complete a health care proxy and discuss

your wishes regarding donation with your loved ones, completing a health care proxy does not automatically enroll you

in the New York state Donate Life Registry. Upon death, the health care proxy would need to be accessible to

facilitate a donation.

Source: New York State Department of Health. Health Care Proxy Form. Web. 20 June 2014. https://www.health.ny.gov/forms/doh-1430.pdf

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Methodology

Data source for number of individuals enrolled in the New York State Donate Life Registry as a percentage of population age 18+:

New York Alliance for Donation. “NYS Donate Life Organ and Tissue Donor Registry.” March 3, 2014. http://www.alliancefordonation.org/sites/alliancefordonation.org/files/2014_February_Enrollment%20Data.pdf Based on data as of March 3, 2014.

Population figures, used as denominators to calculate donor registration rates in New York state and New York state counties:

U.S. Census Bureau. “County Characteristics Datasets: Annual County Resident Population Estimates by Age, Sex, Race, and Hispanic Origin: April 1, 2010 to July 1, 2012.” http://www.census.gov/popest/data/counties/asrh/2012/CC-EST2012-ALLDATA.html

Data source for number of individuals enrolled in state registries in the United States as a percentage of population age 18+:

Donate Life America. “2014 National Donor Designation Report Card.” June 2014. Web. 7 July 2014. http://donatelife.net/wp-content/uploads/2014/06/Report-Card-2014-44222-Final.pdf Based on data as of December 31, 2013.

Data source for number of patients on waiting lists in the United States:

U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. http://optn.transplant.hrsa.gov/data/ then click “National Data,” on the left, choose category “Waiting List,” select “Candidate,” Click “Overall by Organ.” Based on OPTN data as of May 2, 2014.

Data source for number of patients on waiting lists in New York state:

U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. http://optn.transplant.hrsa.gov/data/ Click “State Data,” on the left, click on map of New York state, choose category “Waiting List,” select “Candidates,” click “Overall by Organ.” Based on OPTN data as of May 2, 2014.

Data source for number of patients who died while on waiting lists in the United States:

U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. http://optn.transplant.hrsa.gov/data/ Click “National Data,” on the left, choose category “Waiting List Removals,” choose category “All Organs,” select “Candidates,” click “Removal Reasons by Year.” Based on OPTN data as of May 2, 2014.

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Methodology

Data source for number of patients who died while on waiting lists in New York:

U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. http://optn.transplant.hrsa.gov/data/ Click “State Data,” on the left, click on the map of New York state, choose category “Waiting List Removals,” choose category “All Organs,” select “Candidates,” click “Removal Reasons by Year.” Based on OPTN data as of May 2, 2014.

Data source for the number of individuals currently on the transplant waiting list by state:

U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. http://optn.transplant.hrsa.gov/data/, then click “National Data,” choose category “Waiting List,” select “Candidate,” then click “Overall by Organ,” then choose “Build Advanced Report.” Choose “Waiting List,” “Organ,” and “State” categories, then click “Go.” Based on OPTN data as of July 11, 2014.

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Endnotes

1 Donate Life America. “What you need to know.” Web. 11 Apr. 2014. http://donatelife.net/understanding-donation/

2 New York Alliance for Donation, a nonprofit organization that includes New York state-based tissue and organ donation recovery organizations, medical professionals and individuals whose lives have been affected by donation. “Needs and Benefits.” 5 Apr. 2013.

3 Ibid.

4 U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. Data Reports. Removal Reasons by Year. Removed from the Waiting List: January, 1995 - January 31, 2014. Web. 2 May 2014. http://optn.transplant.hrsa.gov/data/

5 U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. Data Reports. Current U.S. Waiting List. Overall by Organ, New York. Based on OPTN data as of May 2, 2014. Web. 2 May 2014. http://optn.transplant.hrsa.gov/data

6 U.S. Department of Health & Human Services, Health Resources and Services Administration, Organ Procurement and Transplantation Network. Data Reports. Current U.S. Waiting List. Overall by Organ. Based on OPTN data as of May 2014. Web. 2 May. 2014. http://optn.transplant.hrsa.gov/data/

7 United States Department of Health and Human Services, Organdonor.gov, Donate The Gift of Life. “The Need is Real: Statistics and Facts.” Web. 7 Apr. 2014. http://organdonor.gov/whydonate/index.html

8 Donate Life America. “2014 National Donor Designation Report Card.” June 2014. Web. 7 July 2014. http://donatelife.net/wp-content/uploads/2014/06/Report-Card-2014-44222-Final.pdf Based on data as of December 31, 2013.