Lauren’s Law Becomes Permanent to Help More New Yorkers Register as Organ Donors

In 2008, an 8-year-old Stony Brook, NY resident named Lauren Shields was diagnosed with cardiomyopathy and heart disease. Doctors determined that Lauren’s condition was life threatening and in order to survive, she would need a heart transplant. On Feb. 3, 2009, her name was placed on the organ transplant list.

No one knew when a heart would become available and Lauren’s health was quickly deteriorating. As a result, doctors had to place her in a medically-induced coma while waiting for a donated heart. After six long weeks, news came that a heart was available. Doctors performed the transplant in March 2009. In the days and weeks after the surgery, Lauren underwent kidney dialysis, physical therapy and had to use a wheelchair. Thankfully, however, by the time school resumed in September, Lauren was well enough to walk herself into her fourth-grade classroom.

Following her experience, Lauren vowed to become an advocate for organ donation. Her goal was to help increase the amount of registered donors so that others like her would not have to wait so long for a transplant. According to Donate Life America which ranks states’ organ donation registry data, New York has the lowest percentage of registered donors in the nation—just 28% are registered—but New York has the third highest need. Nearly 10,000 New Yorkers are currently on a waiting list. Thanks to Lauren and other advocates, the state has implemented some measures to increase registered donor rates.

In 2012, New York passed Lauren’s Law named in her honor. This law amended the public health law to require those applying for a driver’s license to complete the organ donor registry section of the license form. Prior to this law, the section appeared on the form but people could leave it blank. Lauren’s Law requires applicants either answer ‘yes’ or ‘skip this question’ as to whether they wish to be enrolled in the Donate Life Registry. When the law was enacted, it was scheduled to sunset. Thankfully, this spring the legislature passed legislation to make Lauren’s law permanent and the Governor signed the legislation into law last week.

New York state has passed other measures to help improve the percentage of registered donors. In February, it became possible for 16 and 17-year olds to make an anatomical gift upon their death. I was proud to co-sponsor legislation that lowered the age to register as an organ donor. Prior to February, people had to be 18 to register with the Donate Life Registry. Now 16- and 17-year-olds are asked on their license forms if they would like to be registered in the Donate Life Registry. While 16- and 17-year-olds can registered, the enacted legislation still allows parents to rescind their child’s authorization if the time of death occurs before the donor turns 18. This change in the law is significant because many people get their driver's license before reaching the age of 18 and sometimes 8 years will pass between the first visit to the DMV (at age 16) and the next (when people have to renew their license). Therefore, if they aren’t able to register when they first get their license at 16 or 17, it was very unlikely that they would register until they had to renew their license 8 years later.

Lastly, in an effort to further encourage people to be organ donors, in 2016 New York enacted another law that requires people applying for health insurance through the NY State of Health Marketplace to be asked if they would like to be registered in the Donate Life Registry. This requirement went into effect April 2017 and hopefully will be one more way to make New Yorkers aware of organ donation and encourage them to register.

Happily, Lauren Shields continues to be an advocate and frequently visits schools to talk to people to encourage them to enroll in the Donate Life Registry. Because of her experience, she plans on becoming a cardiologist to help others like her. To get more facts about organ donation, visit the Donate Life Registry Web site. To sign up to be an organ donor, visit http://on.ny.gov/1SfeJ4S. If you are not sure if you are registered, check your driver’s license for a small heart with the words “organ donor.” If you do not know, call 1-866-693-6667 or email donorreg@health.state.ny.us to ask. If you have any questions or comments on this or any other state issue, or if you would like to be added to my mailing list or receive my newsletter, please contact my office. My office can be reached by mail at 200 North Second Street, Fulton, New York 13069, by e-mail at barclaw@nyassembly.gov or by calling (315) 598-5185. You may also find me, Assemblyman Barclay, on Facebook.