This post responds to my reader, Chuck Kleinhans, who asked for a follow-up to my previous post: Too Disabled For An Organ Transplant, which ran last week. Chuck wanted to know a little more about the 1984 National Organ Transplant Act (NOTA).
The National Organ Transplant Act (NOTA) was enacted in 1984. It is the first federal organ transplant law. Prior to that time, states organized their own organ transplant rules and they worked! The Uniform Anatomical Gift Act (UAGA) was enacted in all states, which means that states preserved their autonomy, but strove for consistency and uniformity with regard to organ transplant rules. The UAGA was first adopted in 1968 and was revised in 1987 in accordance with NOTA.
In short, NOTA limits all contributions to the U.S. organ supply pool to organs that are altruistically supplied. In other words, it prohibits any “valuable consideration.” At the time, Congress was directly responding to one rogue doctor, who had previously lost his license to practice medicine. That doctor, Barry Jacobs, proposed brokering organs from poor people of color in the Caribbean. His proposals represented the worst of ideas to bring more organs into the supply pool. It’s unlikely the platform would have gotten anywhere.
But, Congress ran with the issue and drafted a NOTA, which federalized organ procurement and allocation. That wasn’t so bad as information sharing was maximized. Problematic, though, was the stipulation that there could never be any valuable consideration for an organ. This means that a prospective patient or third party can’t even provide a cup of orange juice, piece of toast, thank you gift of any sort, let alone money to a potential donor. The law is that restrictive. In fact, violations of NOTA could lead to steep penalties including a $50,000 fine and five-year incarceration. It also means that states lost the ability to experiment with different procurement platforms (Pennsylvania pulled back on a burial benefit law). Some states have pushed at the margins, but only after numerous communications with the Justice Department lawyers, hiring attorneys, and setting up committees for very modest reforms.
In human terms, this means that a factory worker who wants to donate an organ to his friend is stuck with hard options. Donate an organ and possibly lose his or her job (for taking time off), or not be paid for the five weeks of recovery. During that time, who is to pay the rent, utilities (gas, electric, phone), and food for the family? A third party’s effort to assist the family in exchange for the factory worker’s donation would be in violation of NOTA, the 1984 law. Pragmatically speaking, NOTA is a disincentive to organ procurement for most Americans who would otherwise like to donate, but cannot afford to do so. They simply cannot take the risk that they might lose their job or not be paid for the wages lost. They can’t take the risk that they might be prosecuted, fined, and incarcerated for receiving bags of food or clothes for their kids as an acknowledgment for donating an organ. Only federal workers are guaranteed to keep their jobs and get paid during that time for donating an organ. Some states have experimented with this too. But for the most part, the middle class and working poor put a lot at financial risk to donate an organ.
Such restrictions are very difficult to justify in 2012 when biotech firms are built on the supply and demand (buying and selling) of human body parts or when the buying and selling of reproductive material is common--and there are no federal rules restricting or regulating incentives in that industry. Potential solutions are within reach, but they would violate the 1984 law.
So thousands of American men, women, and children die each year because the U.S. does not have an adequate supply of organs. Meanwhile, members of Congress lack the commitment, compassion, and courage to change a law that is sorely out of touch with reality.
