Shortened lifespans, lack of gainful employment, missed birthdays, holidays spent alone, travel cut short. People with chronic kidney disease lose life experiences every day.
“It’s an illness that makes patients feel invisible because of all of the difficulties they have in getting treatment and just trying to exist,” said AMA member Greta C. Manning, MD, a family physician in private practice in Clarksville, Tennessee, and the founder of Ora’s Alliance, a nonprofit foundation that promotes awareness of kidney diseases.
Created in 2008, the foundation was named after Dr. Manning’s mother, Ora, who died from complications of chronic renal failure in 2006.
Dr. Manning is one of 11 physician leaders who were members of the second cohort of the Medical Justice in Advocacy Fellowship, an education initiative from the AMA and the Satcher Health Leadership Institute at the Morehouse School of Medicine.
The first of its kind, the Medical Justice in Advocacy Fellowship is a post-doctoral fellowship designed to enhance physicians’ advocacy leadership skills to improve health outcomes and advance health equity in the areas they serve or may serve.
“Modern medicine does not offer a definitive cure for chronic kidney disease [CKD], and the treatments we have are really suboptimal,” Dr. Manning noted during a presentation about her fellowship capstone project—"The diagnosis and treatment of chronic kidney disease by primary care physicians: An assessment of guideline compliance”—at the 2023 AMA Interim Meeting. “The quality of life for someone living with CKD is poor.”
A universal experience
Predictably, patients from racial and ethnic groups that have been historically marginalized experience inequities in care for CKD.
”But another of the problems with chronic kidney disease is that everybody experiences this poor quality,” Dr. Manning said.
Not only has the treatment landscape remained unchanged, the outcomes remain abysmal. The majority of patients with CKD are treated at brick-and-mortar sites, but since early 2020, the number being treated at home with hemodialysis has jumped by some 50% likely due to the COVID-19 pandemic. Peritoneal dialysis—the modality most often administered at home—saw a simultaneous increase in use. Unfortunately, the mortality rate for both modalities also increased. In addition, the longer a patient is on peritoneal dialysis, the less effective it becomes.
Kidney transplants, on the other hand, may yield a better quality of life and a longer lifespan, but wait times can be unsurvivable. In 2020, for example, more than 25,000 kidney transplants were performed for end-stage renal disease, yet more than 88,000 patients remained on waiting lists.
“Far too many people still don't understand how devastating these illnesses are and how much money we’re spending to fail our patients,” Dr. Manning said, noting that spending on CKD was more than $120 billion in 2019. “That’s where the fellowship helped me gain a voice.”
Advocacy is the prime mover
The Medical Justice in Advocacy Fellowship aims to prepare the next generation of physician advocates to generate and share ideas to drive meaningful policy changes.
Each cohort’s 15-month program provides a mentoring and training platform featuring monthly virtual learning sessions, as well as in-person learning experiences. The second cohort ended in late 2023.
“I spent the first five years of this work just crying about it,” said Dr. Manning. “So I'm excited that I'm now able to articulate my passion and to engage members of Congress about how important chronic kidney disease is and empower others to do the same.”
At the top of the list of things Congress and researchers should take note of, Dr. Manning said, is the implantable kidney—the product of a partnership between the University of California, San Francisco, and Vanderbilt University—which “could save the health care system billions.”
But prevention isn’t far behind.
The top two “causes of chronic kidney disease are diabetes and hypertension,” she said, adding that some diabetes drugs, such as empagliflozin and dapagliflozin, have shown great promise in cutting CKD risk. Improving diabetes prevention and blood-pressure control are two major initiatives of the AMA.
“Advocacy is an emotional yet essential work that requires commitment to a goal,” Dr. Manning said. “Passion drives this work and all your gifting and talents emanate from the fuel it generates.
