“I think it’s going to give a lot of publicity and shine a lot of light on the problems kidney patients are having” as well as on the struggle to treat them, Pastan said. “I think if they follow through on them they will have a major impact. There were not a lot of specifics about how they were going to carry out the goals.”
The goals are ambitious. They include reducing the number of Americans developing end-stage renal disease by 25% by 2030, and by 2025 to have 80% of all newly diagnosed patients either receiving a transplanted kidney or getting dialysis at home.
That has huge implications for Georgia and other Southern states, which are the nation’s worst-ranked in important kidney health factors.
More than 1 million Georgians live with diabetes, one of the two top conditions that lead to kidney disease. The other is hypertension, or high blood pressure, which afflicts more than one-third of Georgians, according to the American Kidney Fund.
As a result, the state has a thriving dialysis business, with more than 21,000 people in end-stage kidney disease receiving the treatment.
“It’s a big deal,” Trump said at the ceremony where he signed the order.
‘Paying for sickness’
The proposal contains a raft of ideas. Some can be implemented immediately, some not. One would use federal money to incentivize organ donation by live donors. One would promote invention of an implantable artificial kidney; others would revamp the system to take better care of the organs that are already donated or shake up the regions that do a poor job of encouraging donation. Of the 5,000 Georgians waiting for an organ transplant, more than 90% need a kidney. Reforming the organ procurement regions that aren't up to snuff could help Georgia, which is in danger of losing more organs to areas where donation rates are lower.
The proposal that drew the most attention in news accounts would seek to shift dialysis from clinics to homes, and take aim at the archaic system that has given rise to the hundreds of dialysis clinics across Georgia. That proposal may have the most concrete impact, testing out new incentive plans for half of the nation’s dialysis patients. If it works, those patients at home will have a more comfortable dialysis experience and are likely to spend hours longer on the procedure, which is more natural for the body. If they can do dialysis while they sleep, they also have a better chance of keeping a job.
In the 1970s, Congress simply agreed that Medicare would pay for dialysis for anyone who needs it. The problem is, that created an incentive for health care providers to invest in treatment of the worst stage of the disease — but it created nothing comparable for the earlier stages, much less for preventing it altogether.
Alex Azar, Trump’s health secretary, in announcing the changes, said: “For decades, across all of American healthcare, and kidney care in particular, the focus has been on paying for procedures, rather than paying for good outcomes. We need to flip that around.”
Praise has been virtually universal for the goals, for the intention to take a new look at kidney disease, and for the proposals outlined so far.
Where critics find fault is in the modest plans for the first goal: to prevent, detect and slow the progression of kidney disease in the first place. The administration plans an education campaign, as well as some pilot programs testing incentive programs for better care.
The key to significant impact on that goal doesn’t require reinventing the wheel, critics counter, but simply ensuring access to basic health care, especially among the poor.
“Are all admirable goals, and the federal government should be working toward that,” said Laura Colbert, the director of Georigans for a Healthy Future, which has advocated for coverage of poor Georgians through Medicaid under the Affordable Care Act. “When you contrast those goals with the other actions the federal government is taking around health care they don’t necessarily line up,” she said, specifically citing the administration’s legal arguments that same week against the Affordable Care Act.
Georgia’s GOP leaders declined to expand Medicaid to all of Georgia’s poor, citing the cost to the state and to the federal government. Gov. Brian Kemp is currently developing a more limited plan for Medicaid coverage.
‘The Diabetes Belt’
Dr. Karen Kinsell is often sought out as an expert on rural Georgia health care because she is the only medical provider in Clay County. She said she’s watched about three dialysis clinics spring up in her area, one of them smack across from the local fast-food restaurants whose popularity contributes to kidney disease. Part of the problem is patients’ own choices in whether to take care of their health, she said. But not all.
“Yesterday I had a patient come in with blood sugar of 589,” she said. Normal is in the low 100s. “He realized he hadn’t taken his (diabetes medications) for six months because he couldn’t afford them. He is going to end up in the emergency room.” That patient can’t get funding for pills or for insulin — whose price is soaring — or help with his diet, and he’s afraid of being evicted to boot, she said, which complicates everything including keeping up with health care.
But if he got end-stage renal disease, he’d receive dialysis paid for by Medicare.
“If he had Medicaid, he wouldn’t be in quite this fix,” Kinsell said.
“We know all these poor sick people are out there with diabetes and blood pressure out of control,” she said. “That is a crisis; why are we not addressing that now? … We know how to do this. Get the medicines and work with them to make sure they’re doing it correctly. Then addressing the complications as they come up.”
Mike Spigler, the American Kidney Fund’s vice president of patient services and kidney disease education, finds himself seeing both sides. “To us in the kidney community, this was huge,” he said. He was in the room as Trump signed the order. He’s also been in Georgia, doing kidney screening events at Stonecrest Mall and other sites.
“We frequently find people with uncontrolled diabetes and high blood pressure — blood glucose in the 300, 400, 500, 600 range, blood pressure 200 — not taking their meds,” he said.
“Not only Georgia but the whole South, what they call ‘The Diabetes Belt,’ is disproportionately affected by kidney disease. Having this focus and attention from the federal government is a good thing,” he said. And noting the transplant and dialysis initiatives, he said: “All those things are very, very good things. All extremely good things.”
However, he added “Without question that is the most important to us: preventing kidney disease in the first place.”
KIDNEY DEBACLE IN GEORGIA
Kidney disease doesn’t get as much attention as diabetes or high blood pressure. But kidney disease is one of the potentially fatal endpoints of those conditions, a way that they can kill. Kidney disease is a problem particularly in Georgia and the Southeast.
1.1 million: Georgians with diabetes. Diabetes and high blood pressure are the two main causes of kidney disease. A total of 3.7 million Georgians have either diabetes or pre-diabetes, a condition that can lead to diabetes where the person's blood glucose levels are getting to be too high. Large numbers of those diabetics and pre-diabetics don't know they have the condition, making it more dangerous.
27,000: Georgians living with end-stage renal disease ("renal" means kidney), or ESRD. They will die without dialysis or a kidney transplant. Life expectancy on dialysis is five to 10 years.
4,790: New cases of kidney failure in Georgia in the latest year available, 2016.
85: The number of those new 2016 cases who received a kidney transplant. Between new cases and longer-waiting cases, more than 500 Georgians receive kidney transplants each year. That number is rising.
4,600: Georgians on the waiting list right now for a kidney transplant. The number is lower than it should be, since Georgia isn't as good as other states at getting people in the end stage who are on dialysis screened and registered for the transplant wait list.
Sources: UNOS, American Kidney Fund, American Diabetes Association
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