Article by Tiffany Christensen

excerpted from Finding Your Voice in the Healthcare Maze

Living Through Tragedy and Seeing the Need

On May 17th 1999, tragedy struck the Folwell Family. After their 7-year old son, Dalton, was hit by a car as he was boarding a school bus. At the hospital, the grieving parents learned their beloved son was brain dead and were faced with the question of whether or not to donate their own child’s organs. Dale Folwell remembers thinking “Am I really having this conversation?”

Even though he and his wife were advocates of organ donation prior to being asked this question, his wife resisted the idea. Folwell states that donor parents in a trauma situation are often not saying no to donation, “they are saying no to death and it is very difficult to separate the two.” Folwell stood by his wife in the decision to not donate.

As the Folwells waited for more tests to be performed on Dalton, they sat in the pediatric ward, surrounded by other sick children. Mrs. Folwell looked around and thought: “What if my son was one of those children who needed an organ?” She turned to her husband and said “I’ve changed my mind.” The Folwells ultimately gave permission for Dalton’s organs to be donated. This was the first time the Folwells had been so directly impacted by donation. Unfortunately, it would not be the last.

In 2004, Dale Folwell was elected into the North Carolina State House of Representatives. In 2006, a seemingly healthy friend of Representative Folwell’s unexpectedly died of a massive stroke. Even though his friend, Tim, had a heart on his driver’s license Folwell later discovered that this was not binding. At that time, the heart on any North Carolinian’s license was merely a sign of intent.

Because Tim knew about Dalton’s gift of donation, he had always been clear with Representative Folwell that he, too, would wish to be a donor. Unfortunately, when Tim’s family was called to consent to donation, they were not able to be reached. Because of this, Tim’s wishes could not be honored and he was not a donor. Once again, Dale Folwell and his family were touched by the importance of donation and were beginning to see a larger need through their own tragedies.

Advocacy in Action

As an elected representative, Folwell reflected on his experiences with organ donation. He realized that because the heart on the license was not first person consent, “you had 3 million people thinking that they were organ donors but they really weren’t.” This concerned and upset Representative Folwell and began his journey into first understanding why the heart on the driver’s license was not first person consent and then to decipher how he could use his position in The House of Representatives to change this legislation.

Folwell was learning that first person consent would make a difference to both the community members and professionals alike. It is important to understand that if a person’s organs are not kept oxygenated within a required 15-30 minute time-frame, they will not be able to be donated “Not only were we not honoring the wishes of the decedent, we were preventing first responders and other medical professionals from being able to keep organs oxygenated and viable for donation,” Folwell notes.

Finding solutions to these issues turned out to be more difficult and complicated than he thought it would be. Folwell turned to the Uniform Statutes Commission, a “think tank of all states.” There he was given the Uniform Anatomical Gift Act as a template for customizing and working into North Carolina law.

For an issue such as organ donation, many people must be involved in the efforts for education, awareness, and advocacy.  In getting the Heart Prevails Law passed, many organizations* had to come together. Folwell says with a smile, “It’s the only time in my history where I have seen the trial lawyers, the hospitals and the doctors all on the same page.”

In October 2007, House Bill 1372, “Heart Prevails” passed unanimously, making the heart on the North Carolina driver’s license first person consent to donate organs and corneas. Folwell notes that House and Senate Members, regardless of gender, race, or political leanings were able to go back to their district and feel good about this positive outcome.

Since the Heart Prevails Law’s implementation in 2007, North Carolina has seen a 58% increase in organ transplants. This is a staggering statistic that is only matched by Folwell’s next piece of legislation that passed a year later. 
 
In Senate Bill 1651, Anatomical Gifts, Folwell was able to reduce the age of blood donor consent to 16, allowing for high school blood drives. In 2009, 11,000 more pints of blood were donated than in previous years and 16 year olds represented 25% of all high school age donors. As we all know, blood is precious and needed for those undergoing surgery or suffering major accidents. Blood donation goes a long way: every pint affects 3 people.

In addition to helping patients, this law is also setting a cultural foundation. Statistics show that a student who donates blood 3 times in high school aren’t only pint donors but life-long donors, donating gallons of blood over their lifetime. This is just one more example of how Representative Folwell’s tragedy continues to inspire change.

The Need for Community Engagement in the Advocacy Efforts

Representative Folwell would like to emphasize that “but for the DMV examiners asking this question [about putting a heart on the license] and first responders taking the time to look for the heart on the driver’s license during the process of identification…but for those two things there would be more people dying and fewer people living.”

It is clear that many key people are required for this life-saving initiative to be successful.  When asked how a lay person could be an effective advocate for organ donation, Folwell responded that there are many ways to get involved. Among those he listed: “Send an email to your friends and ask them if they have a heart on their license. Bring it up in civic clubs and junior leagues. Become a part of the ambassador program that brings donuts and coffee to DMV examiners.” Another possibility could be to volunteer with the local Organ Procurement Organization and become trained as a community advocate for donation.

Thank You

Advocacy comes in many different forms. Having an advocate within the state and national government willing to stand up for important healthcare issues is both essential and inspiring. When that advocate, like Representative Folwell, is acting from a place of personal experience, those actions come from a place of true authenticity and can take on an even greater meaning. North Carolina is one of only a handful of states who have made the heart on the license first person consent. Not only has Dale Folwell made a powerful impact in North Carolina, he has also set a model for other states to take on similar legislation. While no one would ever want such tragedies to befall a family, North Carolinians can be grateful to our representative for taking his pain from the past and finding ways to make a better future.

The following organizations/individuals endorsed the House Bill 1372, “The Heart Prevails Law”

The Carolinas Center for Hospice and End of Life Care
NC Hospital Association
CNC Medical Society
NC Eye and Tissue Bank
NC Funeral Home Examining Board
NC Medical Examiner
NC Department of Motor Vehicles
Organ Procurement Organizations

More Facts about HB1372:

HB1372 converts the heart-on-license and the correlating names in the donor registry to legal first person consent. This means that next-of-kin can not change a donor’s decision.

Those already in the registry will be grandfathered and the heart on their license/name in registry will convert to first person consent.

It is important for donors to share their wishes with their family as next-of-kin will be notified of their loved one’s decision at the time of death and consulted for a medical/social history. 

The heart indicates organ and eye donation ONLY, not tissue. As in the past, families will be approached and given the opportunity to consent for tissue donation.

Names of those with the heart symbol on their license are kept in a confidential database utilized only at the time of death by authorized donation agencies.

Currently, going to the DMV is the only way for a person to be added or deleted from the DMV donor registry.

Donor cards are still a legal document and may be used if requested. However, signed cards are not entered into the donor registry and must be carried at all times.

Those under 18 NEED NEXT OF KIN CONSENT (unless emancipated).

How to Become a Donor in NC

• Indicate you want to be a donor on your Driver’s License

• Register on North Carolina’s State Registry- www.donatelifenc.org

• Complete an Organ, Tissue and Eye Donor Registration Paper Enrollment Form (available through Carolina Donor Services)

•  Share your wishes with your family