Political Advocacy and Chronic Kidney Disease
Kidney disease and dialysis have a unique relationship with the government of the United States. The introduction of dialysis treatments in the middle of the last century created the possibility for those with end stage renal disease to survive despite having a life-threatening, chronic disease. However, in the early days of dialysis not everyone was able to get the life-saving treatment.
Death squads, medical ethics and Medicare coverage
In the 1960s, dialysis treatments were very expensive and the short supply of dialysis machines limited the number of patients who could get treatments. Only the very wealthy could afford to pay for a dialysis spot; the rest of the people with kidney failure were presented to a committee of anonymous citizens who were selected by hospital boards or medical societies. The members of the committee were responsible for deciding each patient’s fate.
First, three different committees determined whether the patient was worthy to receive dialysis based on health status (no diabetes, high blood pressure, bone disease, etc.), psychological ability to handle stress and financial resources (patients needed at least $30,000 to cover three years of treatment). Then, a committee known as the “death squad” or “Life or Death Committee” evaluated the patient’s worth in the community. In Seattle, this group was comprised of community representatives including a: banker, surgeon, lawyer, minister, labor leader, housewife and government official.
The members of the Life or Death Committee would use criteria such as the patient’s: age (15-55 years old), contribution to the community (employed, housewife/mother, husband/father or student), location (near treatment center) and character references to deem who was deserving of treatment.
Dr. Willem Kolff, who invented the first dialysis machine, stated in an interview, “At one point, there were death committees to decide who should receive the dialysis treatment and who should be left to die. I strongly argued against this deplorable system. By the mid-1960s, fewer than 800 Americans were sustained by hemodialysis, although there were more than 10,000 qualified patients. This problem worsened by the early 1970s, when the number of qualified but untreated patients exceeded 20,000.”
An article written by journalist Shana Alexander appeared in Life Magazine in 1962 explaining the committee’s decision-making process. The public was outraged at the committee’s unfair selection process and random qualifications based on its own judgments. It was alarming to the public that citizens were responsible for “playing God”.
In 1965, the committee rejected a 16-year-old, high school honor student dying of renal failure whose parent was a friend of engineering professor, Dr. Albert Babb. Dr. Babb met Dr. Belding Scribner, inventor of the Scribner shunt, a vascular dialysis access, at a lecture Dr. Scribner gave to the University of Washington’s School of Engineering. Dr. Babb told Dr. Scribner he wanted to build a machine to save his friend’s daughter. The doctors set up an experimental research project, as a way around the committee’s rule, and invented a home hemodialysis machine.
With the availability of home hemodialysis, the Life or Death Committee was no longer necessary and was disbanded in 1967. Many scholars consider the role played by the Life or Death Committee to be the beginning of bioethics (medical ethics).
Another event that brought attention to kidney disease happened in November 1971. Shep Glazer, the vice president of the American Association of Kidney Patients (AAKP), elected to receive dialysis on the floor of the U.S. Congress in front of the House Ways & Means Committee to demonstrate the needs of ESRD (end stage renal disease) patients to the representatives.
Following these events, in September 1972, Congress passed a special Medicare provision for those with end stage renal disease that funded dialysis and transplantation for people with kidney failure regardless of age. The Medicare ESRD program was an answer to the ethics of selecting who lives and who dies, and came about as a result of public and political awareness.
Why political advocacy is still necessary for kidney disease
First and foremost, political advocacy is necessary to ensure dialysis patients get the best quality care possible. In the early days of dialysis, treatment included only the cleaning of blood and fluid removal. In the years that followed, advances were made because of a better understanding of ESRD and its effect on the entire body. New medicines were introduced to help with specific problems like anemia and bone disease. Better care and more advances continue to help people on dialysis live longer and better lives. However, while the cost of dialysis treatment is rising, Congress does not have an annual adjustment in place that would take into account the increase in the cost of dialysis services, new technology, labor, inflation or other expenses. Government funding needs to be on par with treatment costs in order for dialysis centers to afford to provide the best treatment available. Currently, kidney disease activists are trying to get the Kidney Care Quality Act (H.R. 1298, S. 635) passed through both houses of Congress that will provide an annual adjustment for inflation regarding dialysis care.
As the number of people needing dialysis increases, the cost to the federal government will also grow. Because Medicare is constantly being analyzed for areas to cut, it is beneficial for people with kidney disease to let their fellow Americans and lawmakers know the importance of dialysis treatment. Other diseases such as AIDS, cancer, diabetes and others are competing for the limited dollars of Medicare.
Public opinion and political advocacy have powerful influence in getting changes made in the American political system. Changing public policy comes about when groups with a common cause communicate with their elected officials, donate money, endorse and vote for candidates who are favorable to their cause and develop relationships with representatives to educate them about a cause.
Average citizens sometimes underestimate the power of their voice when it comes to politics. Many feel that professional activists and lobbyists are the ones with influence; however, when a group of like-minded citizens come together, they can be very persuasive.
How average citizens can raise awareness for kidney disease
At the most basic level, raising awareness of kidney disease and dialysis happens when people with kidney disease talk about dialysis and their lifestyle with friends and family members. The general public and lawmakers may not be as accessible as a neighbor, but there are many websites making it easier to communicate with local and federal representatives.
Kidney advocacy websites are focused on educating visitors and presenting ways for people to get involved with little effort.
Dialysis Patient Citizens, or DPC, is a non-profit organization led by dialysis patients. DPC’s mission is to improve dialysis patients' quality of life through education and advocacy. DPC membership is open to all dialysis patients, no matter where they receive dialysis, and is free for dialysis patients, those with kidney disease who are not yet on dialysis and their family members. To learn more visit: www.dialysispatients.org.
Kidney Care Connections is a community education service of DaVita Inc. that makes it easy to write letters to lawmakers or invite representatives to tour dialysis centers. At a click of a button, you can find out the name of your representative and find sample letters and invitations. If you would like to help make a difference, go to www.KidneyCareConnections.org and click on “Advocacy Tools” to get involved.
The National Kidney Foundation (NKF) at www.kidney.org, American Association of Kidney Patients (AAKP) at www.aakp.org, Renal Support Network (RSN) at www.rsnhope.org and many other organizations have websites and programs to support dialysis patients through education and advocacy. To join any of these groups, visit their websites for details.
At this time, the kidney is the only organ in the body whose function can be replicated, allowing a person to stay alive when his or her kidneys have failed. The history of the Life or Death Committee and other actions by concerned individuals led to dialysis becoming a treatment that all our citizens would be entitled to through Medicare. The decisions of our government and society made it possible for those facing kidney failure to have a second chance at life and, as times change, it is the responsibility of everyone to ensure this will always be the case.