Before receiving a heart transplant last week, 15-year-old Anthony Stokes experienced a whirlwind of life and near death. In less than two weeks, he was denied access to a lifesaving heart transplant list, and then added to the top of the list. Tragedy became triumph almost overnight—and #BlackTwitter helped bring necessary attention to the young man's story.
For almost a month, Stokes had been hospitalized because his heart is not able to pump blood correctly. Prior to his hospitalization he had no health issues. After experiencing chest pains, he went in for a medical visit, and was diagnosed with a weakened heart. Due to the weakened state, his heart was not efficiently pumping blood to his lungs and body and his heart had enlarged was a result of the condition. Consequently, his weakened heart was failing, and he was told that he had 3-6 months to live.
A letter from Children's Healthcare of Atlanta informed the teen and his family that he would not be placed on a transplant list, citing a history of“non-compliance.” This is a term that medical staff uses for patients that do not take medical advice or medications as prescribed.
At first glance this seems like a very straight forward situation. However, Stokes' mother, Melencia Hamilton, told media outlets that physicians verbally expressed that her son was not placed on a transplant list because of his “bad grades and trouble with the law.” Eyebrows were raised over the seemingly inconsistent accounts of why the young man wouldn't qualify for the surgery.
Non-compliance is a standard reason for denying organ transplants. It is imperative that patients correctly follow the strict instructions for follow-up medical visits and medication schedule. The medications assist in preventing an organ recipient’s body from rejecting the new organ. Although, transplanted organs match very closely, they could still trigger an immune response because they are from a different person. Follow-up medical visits allow medical personnel to take biopsies, or samples, of the transplanted organs. The biopsies will indicate if the organ is accepted or in the process of being rejected. As result, medical staff can make medication adjustment or engaging in other interventions.
Since Anthony Stokes has a history of being a healthy person, why was his time being hospitalized not sufficient to render him compliant? Was his history of being healthy being held against him? In this case, poor grades and trouble with the law was a surprising factor for Stokes, his family and most people that heard about his situation.
When the news reports of Stokes denial spread through television, print media and online, many people were shocked and outraged. Why would poor grades and brushes with the law be a death sentence to a teenage? However, due to patient privacy policies, the Children's Healthcare of Atlanta never responded to this publicly in any detail, holding their position that Stokes was “non-compliant.”
Well, let’s take a look at the Children's Healthcare of Atlanta official reason for denying Mr. Stokes admittance to the heart transplant list. Non-compliance is a catch-all category. Unless specific reasons can be identified, a non-compliance ruling can be viewed as vague, and difficult to challenge. Some physicians have argued against the use of the use of non-compliance to describe patient behavior. Other terms and language that specifically outlines the issue are more helpful. Moreover, medical staff interactions with patients, especially ethnic minorities or immigrants, influence the how often non-compliance occurs.
Interestingly, it appears Stokes’ story grew large enough to make the hospital change their minds. Children's Healthcare of Atlanta added Mr. Stokes to the top of their heart transplant list a few days ago. How did Mr. Stokes demonstrate that he would be compliant in a matter of days? The hospital’s reversal may be the result of new trend for patients that have been denied admittance to transplant lists.
Earlier this summer, a 10-year-old girl in Philadelphia made headlines because she was too young to be added to an adult lung transplant list. The girl’s parents, a US Senator and supporters turned to the media. They were able to push a policy change in enough time that allowed her to receive a lifesaving double lung transplant.
Stokes and his family took a similar path by speaking with the media and involving the Southern Christian Leadership Conference. Subsequently, the Children's Healthcare of Atlanta had a change of heart and added the teen to the transplant list. Prior to his heart transplant, Stokes had a ventricular assist device, or VAD, implanted into his heart.
Although, the media attention likely resulted in Stokes being added to the top of the transplant list, there are still many unanswered questions. It will take time and information to understand the full story of his situation, yet there were other things that were learned.
When dealing with your or a loved-one’s healthcare, active engagement is essential to receiving the most appropriate care. If necessary seek third party assistance from social workers, health advocates and patient navigators. Plus, get independent second or third opinions. When it comes to your health, being a passive participant can make a bad medical diagnosis deadly.
Caleph B. Wilson, PhD is a biomedical sciences postdoctoral fellow at Perelman School of Medicine at the University of Pennsylvania and member of the National Science and Technology News Service. In addition to his work as a scientist, he participates in outreach programs to promote STEM, through mentoring, science education and professional development advisement. Follow him on Twitter: @HeyDrWilson