| by: Lori Hartwell |
The early 1960s must have been an exciting time to be a scientist or health care professional involved in the early development of dialysis. Simultaneously, it must have been painfully traumatic for the people who had to choose the lucky handful of patients whose lives would be saved by this new procedure. Due to limited financial resources, people with kidney failure in the 1960s had to be judged by a committee to be considered for dialysis-and only a few among tens of thousands were chosen. It was not until Congress did pass landmark legislation in 1972 that funding was provided to allow all people with ESRD to have access to this life-saving machine.
I am often surprised about how many people today who depend on dialysis to survive are unaware of the history of our salvation, and how the industry got its start. I had always thought I knew a fair amount about the history of dialysis, but my knowledge about the struggles and courageous decisions that were made during the 1960s was increased significantly when Renal Support Network produced the play Who Lives?
Written by Christopher Meeks, Who Lives? is a dramatization based on the true story of the early testing of the kidney dialysis machine, and decisions on who would be granted access to the machine. Since the alternative to dialysis was death, the title Who Lives? is both descriptive and a true synopsis of what patients faced.
The Renal Support Network had a three-fold purpose in producing this play: 1) to educate the general public about kidney disease, 2) to validate the stories and the journeys of patients with kidney disease everywhere, and 3) to educate health care professionals and legislators whose decisions affect patients' ability to thrive. Simultaneously, we wanted to provide an entertaining, moving story that captured people's attention and helped them connect with the challenges that patients on dialysis face on a day-to-day basis.
Here is the story about the life-and-death committee and how the play portrayed its role in Seattle in the 1960s.
It is 1962, and researchers in Seattle have reached the testing stage for a new piece of equipment called a dialysis machine. Although this machine is experimental, thousands of patients with terminal kidney disease clamor for access. An instant dilemma is created-how do you evaluate thousands of potential patients and choose the few whose lives will be saved? For those chosen, it equates to a new chance at life. For those who are not chosen, it means a loss of hope and inevitable death.
The solution was to form a committee to evaluate each potential patient and decide which ones would get a chance to use this embryonic device. The committee was not drawn from the ranks of physicians or scientists; it was made up of ordinary citizens from the community. This handful had ultimate power over the fate of thousands, but how should these painful decisions be made?
The committee initially imposed qualifying restrictions that immediately eliminated tens of thousands of patients from consideration. Patients had to commit be being on the machine for up to 45 hours a week, and simultaneously had to be employed-it was obviously not an option for those who were retired or those who were too sick to work. To make it even more restrictive, patients had to commit $30,000 for three years of treatments. With inflation, that's about $155,000 in today's money. Dialysis was obviously not an option for the poor.
If you made it past these screening criteria, the committee then would judge you based on your worth to society. Imagine the dilemma that these individuals had to face as they decided what makes one person more valuable than another. In the play, the committee is portrayed as a cauldron of control, envy, hidden and overt prejudice, ethical questions, and the process of resolution. Actors who portray the committee members discuss a variety of questions that were probably debated at the time. They are faced with the perplexing dilemma of having to make life and death decisions when there was no basis for making such decisions.
Ultimately, they decided that ranking individuals according to their value to society would help objectify the decision-making process. But this approach, of course, raised another series of questions. What constitutes "too sick" to be considered? Can the future value of an individual be predicted from past actions? Is a man more valuable than a woman? Is a white man more valuable than a black man? Is it acceptable that blood from a black man run through the same machine as a white man? The answers to these questions immerse the committee in controversy, and inevitably lead to more questions and personal soul-searching.
To make the play even more interesting, the playwright added one more dramatic twist to his imaginings of the dilemma facing the committee. What if one of the applicants that had been turned down actually found this anonymous committee and appeared in person to plead his case? How would the committee handle it?
By following this protagonist, Gabriel Hornstein, in his journey from high-powered attorney to scared patient to compassionate human being, Who Lives? gives us insights into the world of human frailty and strength. In real life, the life or death committee discussions that are portrayed in the play ultimately led to a patient dialyzing before Congress. The message that was put before our legislators at that time was simple, gut-wrenching, and soul-searching-let Congress pick who should live! Congressional members quickly decided that they could not make these decisions, so they approved the Medicare entitlement that established the End-Stage Renal Disease Program. This benefit allowed (and continues to allow) people with kidney failure to have their care paid for through Medicare, thereby saving millions of lives over the past 30+ years. This historic decision was the first (and last) time Congress passed legislation that was specific to a single disease.
Reality on stage
When we were casting the play, I thought it would be more meaningful if we used professional actors who actually had kidney failure. By casting actors who also had kidney disease, we hoped to challenge the long-held public perception that patients with kidney disease are bedridden or tied to a dialysis machine. Actor-patients would also demonstrate that individuals who happen to have kidney disease are well-integrated into all aspects of our society-including successful artists.
We did not know what to expect when we put out our casting call, but it turns out that we were right-there are many actors who are also our kidney failure colleagues. Many, in fact, were right in our Southern California backyard. Who Lives? featured two actors who have undergone kidney transplants-R. Martin Klein and Dale Wade Davis (the latter received a kidney from KABC-TV anchor Phillip Palmer in 2007). The play was also enhanced by the attendence of Nancy Spaeth and Bonnie Parks-Markuson, two individuals who the committee chose to receive dialysis in the 1960s. Both shared their stories of courage with the audience and cast and what it was like in the early days of dialysis. The fact that they are still living life to the fullest reinforces how much hope there continues to be for individuals with kidney disease.
I will be forever grateful for all of the people who worked tirelessly to preserve my life and the lives of the millions of others who have lived with this disease. I hope Who Lives? helps lead us to where we need to go. Ultimately, the play answers its own question. Not only do we live, we thrive, prosper, contribute, and continue to have the ongoing hope of a wonderful and fruitful life.
Acknowledgement: Special thanks to Abbott Laboratories, Amgen Inc, Fresenius Medical Care, and Roche for helping RSN produce the play.
Ms. Hartwell is the president of Renal Support Network, a dialysis patient organization based in Glendale, Calif.