Entertainment lawyer Ken Kleinberg was hospitalized for five weeks when he became seriously ill in 1999. His doctors eventually diagnosed him with kidney disease, but they couldn’t find a cause.
“It was the eve of the millennium and I thought: How is it we do not understand this?” said Kleinberg, whose clients include Jack Nicholson, Mick Jagger and Keith Richards.
An aggressive recurrence a year later nearly killed Kleinberg, forcing him back into the hospital for 13 weeks. At one point, medication damaged his skin as well as his white blood cells.
During weeks spent in medical isolation, he thought, “If I recover from this, I will make sure to advance this research.”
Kleinberg, 70, made good on his promise in 2002. Working with Dr. Vito M. Campese, professor and chief of the division of nephrology and hypertension at the Keck School of Medicine of USC, he founded the University Kidney Research Organization (UKRO) to support medical research that prevents, treats and cures kidney disease. He currently serves as its president and director.
The American Society of Nephrology indicates that more than 80,000 people die each year from chronic kidney disease (CKD), making it America’s ninth leading cause of death. There are more than 20 million Americans — one in 10 adults — with some form of CKD, a condition that leads to reduced kidney function over time, and many are unaware they have it, according to the National Institutes of Health’s National Kidney and Urologic Diseases Information Clearinghouse.
Current treatment for CKD involves either transplant or dialysis. Both are costly and pose risks for the patient. Dialysis can replace only about 10 to 15 percent of the kidneys’ filtering capacity, and two-thirds of dialysis patients have a life expectancy of less than five years, according to the American Society of Nephrology.
Campese says that that even after transplants, patients must take expensive immunosuppressant drugs to prevent their bodies from rejecting the new kidneys, and they are sometimes hospitalized to prevent and treat possible complications. Statistics from the Congressional Kidney Caucus show that Medicare spends $106,373 per patient in the first year of a kidney transplant and $16,844 annually thereafter.
Still, treatments for kidney disease today are much better than they were in the past, and Kleinberg says knowing how much treatment has improved recently has made him a firm believer in current medical research.
The first successful use of dialysis in treating kidney disease occurred during World War II. In the 1960s, most communities still did not have dialysis machines, and those that did formed committees to decide which patients would receive access to the limited number of machines. Now there are several major suppliers of dialysis machines to the United States, and patients can do dialysis from home with more effective and less expensive machines.
“As a result of these changes, [kidney disease] was no longer a death sentence, but a chronic illness,” Kleinberg said.
However, in many cases, such as Kleinberg’s, the cause of CKD remains unclear, and no cure exists besides transplantation. To encourage scientific research for kidney disease, UKRO gives seed grants to new projects in order to gather data necessary to qualify for larger grants. In 2010, UKRO granted $60,000 each to three special projects, one of which studies how small interfering RNA affects renal failure and hypertension.
Kleinberg says that donors to kidney foundations sometimes think their money will go to research when in fact it funds other activities, such as awareness campaigns.
“There is a lot of misinformation about who is doing research,” he said.
In the United States, diabetes and obesity are responsible for 70 percent of kidney ailments. Inherited conditions, injuries, infections and drugs can also damage the kidneys. Kleinberg says people with kidney disease often are unaware they have it.
“They call [kidney disease] a silent killer, because all the sudden your whole internal system goes bad,” he said.
UKRO CFO Ronald Taubman experienced renal failure and was on dialysis for about 10 years after living for more than 40 years with Type 1 diabetes. (Fluctuating blood sugar levels associated with diabetes erodes kidney function.)
“Dialysis is a godsend, but there are many people who just do not survive on dialysis,” he said. “It is very hard on the body.”
Taubman nearly died twice during his years on dialysis, and long stretches of time spent with a needle in his arm led to infections. He slipped into a 10-day coma when his brain swelled.
“Kidney transplants usually last for only eight years on average,” Taubman said.
In Kleinberg’s case, there were emotional challenges in addition to the medical concerns when he underwent a successful kidney transplant in 2007.
“Even after someone receives a transplant, the kidney can fail,” Kleinberg said. “I was afraid to accept a transplant from my family.”
He did not think he could live with the guilt if he asked one of his children to give up one of their kidneys and his body destroyed it. Eventually, a transplant became available.
Kleinberg, who still doesn’t know what led to his kidney disease more than a decade ago, is optimistic about the current discussions about health among public leaders.
“You see the first lady making children’s nutrition a priority, and it is becoming socially important to do certain things … like stopping kids from drinking soft drinks, and removing the amount of salt and sugar in foods and removing artificial enhancements from food, which are certainly not good for the body. All this is coming of age right now.”
He’s optimistic about the future of kidney disease research. Stem cells appear to be a particularly promising area of kidney research, Kleinberg said. In the future, patients with CKD might be able to use their own stem cells to grow new kidneys that will be perfect matches for their bodies, bypassing the need for antirejection drugs.
“They have grown a bladder from stem cells and have done work in correcting heart valves, but the kidney is large and complex,” he said. “It is a matter of time, money and effort. … Eyes, hearts, and brains are more difficult, but eventually they will get there. This is the reason why I felt the need to start a research organization.”
To learn about kidney disease, prevention, treatment and current research, visit ukrocharity.org.