For the first time in 46 years, the federal government has taken action to help people with kidney disease.
On July 10, Lino Lakes resident and longtime nephrologist Mark Rosenberg, MD, was in Washington to witness President Donald Trump sign an executive order dedicated to advancing American kidney health.
“I have been a kidney doctor for 35 years, and this is the most exciting thing that has happened in the kidney field,” Rosenberg explained. “(The executive order) provides a really bold vision for transforming kidney care. It is an area that hasn't received a lot of attention or new therapies over the last 40 years. By the government declaring it is going to change the way kidney disease is treated, it opens it up to investigators, researchers, venture capitalists (and) companies to now move into this space.”
The last time the federal government took action with regard to kidney disease was in 1973, when it agreed that Medicare would cover the costs of kidney disease, no matter the person's age. “I think for the federal government to show this kind of interest in individuals with kidney disease, and particularly kidney failure, is really unprecedented and opens up a lot of options for kidney patients,” Rosenberg said.
Rosenberg is currently president of the American Society of Nephrology (ASN). For the past five years, he has served on its leadership council. He also serves as vice dean for Education and Academic Affairs at the University of Minnesota Medical School.
For many years ASN has joined other health organizations to advocate that the government step in and take control of kidney disease.
“This has been many years of work trying to get to this stage, trying to get the upper echelons of the administration to really recognize kidney disease,” Rosenberg said. “Our initiative is changing the status quo in renal replacement therapy for patients by focusing on more choices for dialysis modalities and greater access to transplantation and, for patients in the future, by focusing on the development of innovative new therapies such as more portable dialysis and artificial kidneys. The idea is to make care better for patients, give them more treatment options and to spur innovation.”
Earlier this month, Rosenberg was invited to meet with Department of Health and Human Services Secretary Alex Azar. He then visited the White House, where he participated in a listening session with members of the president’s Domestic Policy Council and other administration officials. On July 10, he was one of nearly 500 people who witnessed Trump sign the order, which Rosenberg said has three main goals:
• To reduce the risk of kidney failure through a combination of better prevention, diagnosis and treatment.
• To provide better access to care for patients whose kidneys have failed, including a greater emphasis on home therapy or kidney transplantation.
• To increase access to kidney transplants.
In the case of kidney failure, 90% of the time it means the patient must visit a dialysis center for four hours, three times each week. Dialysis becomes a life-sustaining therapy until the patient is able to get a transplant. Rosenberg said the average wait for a kidney is around five to six years unless the person knows a donor.
“There is more evidence that doing dialysis at home improves the quality of life of patients; and (it) may even improve whether they get sick or not or how long they live,” he explained. “A big part of this is to educate patients and offer more home therapy or a kidney transplant, which is still the best way of treating kidney failure because it removes the burden of dialysis.”
On June 6, Circle Pines resident Randy Kuzel donated one of his kidneys to a cousin. “We grew up together and are six months apart,” he said.
Kuzel’s cousin went in for a high school football physical at the age of 16; lab tests found blood in his urine. Between the ages of 16 and 52, his kidney function continued to decrease. “It just got to the point,” Kuzel said, “where the family finally had to reach out to family and friends last year to see if there was a match. I got tested and, thankfully, I was a match.
“Can you imagine having a sibling, friend or a cousin in need and not helping? I just couldn't imagine not helping him, knowing I was a match.”
Prior to the procedure, Kuzel said, he had several checkups, MRIs (magnetic resonance imaging scans) and tests, which didn't cost him a dime. He was also able to meet with a team of social workers, nurses and the surgeon who explained the procedure and answered any questions he had. “I had my own team of doctors who were looking out for me, and me only,” he said. “My cousin had his own set of doctors.”
Rosenberg said even though medical expenses are covered for donors, the executive order tries to address other costs that might be barriers, including lost wages, child care expenses and transportation. The order also aims to increase the number of transplants, with a goal of doubling the number of kidneys — both real and artificial — available for transplant by 2030.
“They are trying to do a better job of identifying deceased donor kidneys from people who have been declared brain dead in the hospital, which is managed through an organ procurement organization (OPO),” he explained. “They think there are kidneys that are not used when they could be, either because they have some mild abnormalities, or they have been in storage for too long.”
The order also seeks to encourage the identification of kidney failure cases earlier. Rosenberg noted that in the hospital, it is not uncommon to see a patient who comes into the emergency room in the end stages of kidney disease. “They have to start dialysis on an emergency basis, and they had no idea that they ever had anything wrong with their kidneys,” he said.
Kidney X, a partnership between ASN and the Department of Health and Human Services, is also mentioned in the executive order. “It is a different way of trying to encourage innovation in an area where investigators/researchers can develop something and apply for a prize,” Rosenberg said.
“I was honored to witness the president sign an executive order that recognizes the importance of early diagnosis and treatment of kidney diseases, the need to provide individuals with more choices when kidney failure does occur, and the urgent need to increase the supply of organs for kidney transplantation,” he said.
“The combination of these truly important goals signals to the kidney community that this administration is serious about changing the dynamics inherent currently in kidney care.”
Editor Shannon Granholm can be reached at 651-407-1227 or firstname.lastname@example.org