This is a case where a feel-good story fails to deal with the details of what they are proposing. What is left out of the story, are comments from real life patients on home peritoneal dialysis and home health dialysis nurses. I will give you a few of the realities of home dialysis care. The reason that people can do it while they sleep is that they must. Do people realize that this process takes 12 hours per day? Also, the tubing from the machine, which cycles on and off all night long, must be close to the bed. The outflow tubing that takes away the waste, must be run into the bathroom to a drain. The fluid used in peritoneal dialysis comes in boxes that weigh between 20 and 25 pounds each. It takes roughly 70 such boxes per week. Could you store 70 such boxes at your house? Also, it has to be temperature controlled, so they can't stay in the garage. Could you or your elderly loved ones carry those boxes into the house on a daily basis? The point of all this is to show that what sound like a great idea has many downsides. The patient I know would rather go to a dialysis center, and have hemodialysis. This process is performed roughly 3 times per week and takes three or four hours. Which would you prefer?
48
I imagine he and his cronies will profit from this plan in some way. I can’t believe he has an altruistic bone in his body. Perhaps his advisors have shorted these two stocks.
18
I applaud this effort by Trump and his administration. I think it's the only thing I've applauded him for at all. But, what strikes about this initiative, is that it's probably driven only by the fact that his wife has kidney issues. Trump is the epitome of most average Americans. He only gets stirred up about something when the steamroller runs across his own toes. Self-interest trumps all (pardon the pun).
11
I started peritoneal dialysis (PD) in 2013 and had a transplant from a live donor in 2015. While PD allows for daily waste removal, there are things to know to help decide if it’s the right treatment.
Ground Zero:
Hemodialysis (HD) involves having a fistula or other blood-flow anatomical entity created in/on your body. HD connects the dialysis machine to this and waste is filtered directly from your blood.
Peritoneal Dialysis (PD) involves a catheter implanted in your peritoneum in your abdomen. An exchange involves loading special fluid in to the catheter and emptying it after a certain time and loading with new fluid. Waste is collected in this liquid, thus the need for multiple exchanges per day.
1. PD is not for everyone. You have to be hyper-scrupulous as you do it or you can get sick, life-threatening at times. Peritonitis is the most common condition with Vancomycin the typically assigned antibiotic.
2. With PD you feel lousy every day. Even though you are emptying waste daily, it is not the same as being able to urinate throughout the day with your kidneys are working full-time. However being able to perform dialysis daily is still better than doing it 2 or 3 times per week which is what going to a hemodialysis center would bring.
3. PD requires being tethered to a machine (cycler) for several hours a night or manually doing “exchanges”. Manual exchanging is portable but conditions need to be kept.
4. HD can be done at home in certain circumstances.
13
Simply put: This is a good move for patients that will yield better outcomes and a far better experience for those with end stage renal disease. The benefits of increased peritoneal (home-based) dialysis and preemptive transplantation for patients are backed by clear evidence. It will also save money.
As with any major change in U.S. healthcare, the savings will result in reduced revenue for someone. In this case, it will be dialysis providers who have perpetuated the use of antiquated center-based dialysis because of its higher payment and profitability. Look there for the resistance.
3
Turns out that kidney failure is one of the effects of Diabetes II. No wonder kidney failure is skyrocketing as so many people have developed diabetes 2 which is the root cause of immense suffering and health dysfunction and expensive treatments in this country. In my opinion the Diabetes 2 epidemic is as bad as the lung disease epidemic of our cigarette decades. It would’ve most helpful to address the Diabetes 2 epidemic as a health crisis in this country, to help stem the tide
12
My father was diagnosed with a form of acute kidney disease that the doctor said would lead to dialysis. The treatment they recommended was a combination of chemotherapy and antibiotics. I feared the treatment would kill my very healthy father. We took some time out before committing to that and tried other things-- since I had tested positive for celiac and it is genetic, we decided to try a gluten free diet for him (out of pure desperation). Surprise, surprise, his numbers reversed within a month and he now is healthier than he was at the start of that. His doctors were dumbfounded, even though, his immune system was involved in the "disease" and the research said that if you have an underlying immune system illness, symptoms could present as kidney disease. Long and short of it, kidney science has a long way to go and I certainly wouldn't trust this president to guide research based policy. If you have kidney disease consider seeing a functional medical doctor. They take your whole system into account not just your kidney.
11
If Medicare is paying the cost of dialysis, I have to wonder if this proposal is more about making cuts to reimbursements, thus squeezing the centers’ profits? What would be the cost to patients of cutting payments to dialysis centers? I fear this may take a toll on patient care. Though dialysis may be the most costly treatment for patients, it is a lifesaving treatment and an excellent bridge to transplantation. Unfortunately, it is difficult to find matching kidney donors and many patients are reluctant to accept kidneys from people they don’t know or from patients with a history of diseases, like successfully treated patients with hepatitis C.
6
@Ellen
Most people have history of some diseases, e.g., CMV, toxoplasmosis. All these will impact post-transplant care. Transplant can offer better quality of life. One issue is proximity to a good transplant center.
Peritoneal dialysis is interesting compared to hemodialysis, but as I understand it, it is not a long-term solution.
@mPeritoneal Dialysis is a great alternative for some patients, but the risk of infection can be high, necessitating hospitalization. There are no cheap and easy solutions to this problem. As a health care provider myself, I would hate to see patients in need of dialysis denied this life saving treatment based on cuts to Medicare funding, which I suspect may be what this is all about. Who among us is willing to donate a kidney?
4
I have two unrelated questions after reading this article:
(1) I am shocked to learn that 15% of American adults have chronic kidney disease. What are the causes? If some of the causes are preventable, how can we prevent it?
(2) If someone chooses to be a live kidney donor, being reimbursed for time off work isn’t enough. If I am a person who doesn’t have good health insurance, is there a guarantee that my healthcare costs will be paid for life should I suffer serious complications from the donation? Or am i just left on my own? I don’t see how we can expect people to volunteer for live donation given our inadequate healthcare system.
9
Diabetes 2 leads to kidney failure, hence the skyrocketing rates and since many will reach the end stage effects over the next years it will only get worse. The diabetes 2 epidemic is a root cause of a many dire health consequences. It’s likely the real public health crisis of our time.
8
I did not see any mention of something that has been sometimes discussed, which many believe would lead to many more live donor donations (mine included).
Simply - if I live donate, if my remaining kidney fails, give me high priority for a transplant.
It seems so simple, yet it would remove the biggest fear of live donation.
14
@rsercely
In fact living donors do receive additional points on the transplant waiting list (which gives them higher priority) if their remaining kidney fails.
11
That’s how it works now. So are you prepared to donate?
2
I wonder what percentage of dialysis patients could receive in-home dialysis. Depending on whether it's supposed to be PD or HD, different factors contraindicate in-home dialysis.
I, for example, cannot have PD because of anuria and immune insufficiency. I cannot have in-home HD because I live alone and often have catastrophically low blood pressures (day before yesterday I hit 45/27). Many people who are on dialysis are simply too fragile to have dialysis with no medical professional present.
The question is why dialysis has to be so expensive in the US. I have had dialysis at an American non-profit for about $500 per treatment, I have had dialysis at an American Fresenius clinic for over $2000 per treatment. That is obscene. I had dialysis in the UK just a couple of months ago for less than $160 per treatment. And in Germany my dialysis costs about $275 per treatment.
So if Trump wants to save money, maybe he should start by reining in how much dialysis clinics can charge.
27
So Trump is going to make -next to impossible to get- kidneys suddenly appear? Fake news!
23
Trump should not continue a piecemeal approach to healthcare issues. If the ACA is further gutted through Trump and his republican friends, we are all in a bad place. Sometime every person ends up with a preexisting condition, everyone unless they die suddenly from an untreated condition. Trump is only concerned with doing things that benefit big medically connected companies. HE HAS NO PLANS. Remember the Middle Class tax cut from October 2018. Remember infrastructure. Remember Mexico paying for a wall. Remember the wonderful healthcare plan he will tell us about after the election. All lies!
30
This administration has made many a hasty ruling, followed by a half baked plan to ‘very badly’ execute. The devil is in the details and this administration can’t be bothered with the work.
It seems to me that a sudden shift to in-home dialysis could be a huge physical, mental and economic burden on the caregivers for these patients. Also risky for patients if not done properly.
I also can’t help visualizing this administration implementing a kidney transplant program that farms donors by preying on the poor, desperate, ignorant or marginal in our society.
12
Classic Trump bait-and-switch. It may sound reasonable, to the uninformed. This is all about cost cutting, and NOT in a good way. This is culling the Herd, and this particular Herd happens to be middle-aged and elderly, poor AND overpopulated with non-whites. The Trifecta, to his Base. Decreased frequency of Dialysis means increased complications, poorer quality of life, and shorter life expectancy. See where this is going ??? And home Dialysis May be adequate, even preferable for a very select, very small minority of Patients. Those with professional, skilled help at home, and 24 hour care. Good luck with that.
In short : another TrumpScam. Don’t fall for it.
27
@Phyliss Dalmatian
Home dialysis does not require "professional, skilled help at home, and 24 hour care". Peritoneal dialysis is typically done by the patient, by themselves, with no additional staff or help required other than the once a month visit with the nephrologist and peritoneal dialysis nurse. Home hemodialysis does require a companion who can help out in case something goes wrong, but this is often simply a family member. The home hemodialysis machine is very different than the one in dialysis units. It is meant to be used by non-medical personnel. The patient and family members are trained in how to do peritoneal or home hemodialysis, but just about anybody can learn to do it.
While not everyone will qualify (or want) to do home dialysis, there are many more patients out there who could than are currently getting their dialysis that way. Canada's percentage of peritoneal dialysis patients is far larger than in the US.
Lastly, quality of life is often better when dialysis is done at home. It can easier on the body due to the increased frequency of treatments, and dietary restrictions are often fewer. It also means that the patient is not tied to a strict schedule that is set by the dialysis unit, and they can do it within the comfort of their own home rather than having to travel to a unit.
12
@Phyliss Dalmatian
I am no fan of Trump, but some of these proposals are actually good ones. We really do need to reform the way available kidneys are distributed, and we really do need to address some aspects of payment for kidney disease care. The University of California-San Francisco is in the process of developing an implantable bioartficial kidney; federal money for (and attention to) this type of cutting-edge R&D is long overdue.
As for home dialysis, your information is simply wrong. High-quality research has demonstrated both improved quality of life and decreased mortality when dialysis is home based, in part because it permits more frequent dialyzing (and thus less build-up of toxins). In fact, there is evidence suggesting that patients who are able to use home nocturnal hemodialysis at least 5-6 nights a week (preferably 6 nights a week) have survival rates comparable to those of successful transplants. And it is not ony for a select, small minority of patients. Partners, spouses, parents, adult children and roommates can all be trained to successfully assist with either peritoneal or home hemodialysis; most adult patients who use peritoneal dialysis are able to do it themselves, and many who use home hemodialysis are also able to do it themselves.
Trump may be wrong on just about everything else, but on this he actually is doing something right, and as the parent of a kidney patient I, for one, can applaud him for this at least.
12
Peritoneal dialysis is done daily. Hemodialysis can also be done at home daily under certain circumstances.
2
Trump is incapable of anything good.
Believe nothing of his claimed intentions.
Nothing.
19
One of the long-term solutions is using kidneys from animals such as pigs.
But Trump imposed fetal tissue prohibitions, which prevent researchers from developing that.
https://www.nytimes.com/2019/06/05/us/politics/fetal-tissue-research.html
Trump Administration Sharply Curtails Fetal Tissue Medical Research
8
Time to start pretending to care on the run up to the election.
18
This sudden interest of Kidney disease
by Trump may be related to Melania’s
secret surgery earlier this year.
However well intended, it comes about
with a personal issue that will never be
shared with the “fake” media.
Sad.
8
10 to 15% of the entire population?
Really ?
Is it primarily diabetes related?
In a town of 1,000,000, there are 100,000
dialysis patients.....
4
@Dottie
Yes, really. Lots of things can adversely affect kidneys, including diabetes. In fact, diabetes and high blood pressure are two major causes of kidney disease and failure. About 100 million American adults have either diabetes or are in the range called prediabetes (typically, fasting blood glucose between 100 and 125; 126 and up is diabetes). Of the roughly 8 million with diabetes 24% don't know it, and of the roughly 92 million who are at high risk for diabetes the majority don't know it. Likewise, many people who have high blood pressure don't know it, or else are not treating it. These two common diseases alone will result in the failure of many, many kidneys.
7
Long term use of Ibuprofen is also dangerous to kidney health.
8
It is a matter of how chronic kidney disease (CKD) is defined. Under this broad definition, mist people with CKD do not have nor will ever develop end-stage kidney disease (kidney failure requiring dialysis).
3
It is about time to end this sacred cow of coverage by the government for this one disease. Other diseases are lethal and are not covered. Dialysis has turned into a gigantic business sucking money from Medicare. Once a business model has been set up the companies have no incentive to keep the costs low or improve delivery. Why is it that only end-stage kidney sufferers have a right to government covered medical care when no other types of patients have that right. The government would be better off covering the cost of insulin, medicines and diabetic testing supplies to prevent the huge increase in kidney disease which will come from uncontrolled diabetes.
14
@S.L. - the universal coverage for ESRD started during the Nixon administration back in 1972. Outpatient dialysis was still new back then, and not all insurance at the time would cover it. People didn't like having family members die early when there was a treatment, albeit expensive, available. My kidneys failed at the age of 37 and I do not have diabetes. I was first diagnosed at age 23. No one knows why or how I got my particular kidney disease, and I am not the only one who has that story. I do agree, though, that Medicare or some kind of government entity should help pay for all the expensive, chronic diseases out there.
14
@S.L. One of the many ridiculous claims made about the ACA during the pre-passage debate was that it would institute “death panels” in order to cut costs. Well, before 1972, some hospitals had “God panels” or “death panels.” Their job was to determine which patients would be eligible for dialysis. At that time, private insurance simply didn’t cover dialysis, almost no patient could afford to pay for it out-of-pocket, and dialysis was incredibly expensive, leaving charitable hospitals with limited resources, i.e, all charitable hospitals, with no choice but to ration eligibility for care. Not surprisingly, the people selected were disproportionately white and male because they were the ones deemed of greatest economic worth. That didn’t sit well with anyone.
Now as we approach the dismantling of the ACA with nothing to take its place, Medicare’s ESRD coverage will likely be the only thing preventing the re-introduction of “God panels”. If that’s the kind of country you want, so be it. But I doubt many people share your view.
5
This useless president will do anything to deflect things away from himself.
What a pathetic little little man he is. Probably one of the most ignorant, stupid morons walking on this earth.
The sooner this pariah goes away the better.
Trash personified.
16
I fervently hope that people who are suffering experience a change for the better due to this executive order. Truly.
But there is no doubt in my mind that trump's real goal has nothing to do with helping people in need. Somewhere, someone connected to trump is going to either be making money, or benefiting politically.
"DaVita and Fresenius said in separate statements that they welcomed the president’s attention to this area, THAT THEY WERE ALREADY INVESTING IN ALTERNATIVES to traditional dialysis, and encouraged patients to pursue the best options for their health."
7
The best way to improve kidney treatment? Prevent kidney damage from happening in the first place.
The major drivers of chronic kidney disease are high blood pressure and diabetes. Fix those, and you are left with a relatively small number of dialysis dependant CKD/ESRD patients whose disease is caused by other, rarer diseases that cannot be easily fixed. Those patients probably total less than 1% of all dialysis patients in the US.
You need to get ahead of the problem. ESRD takes decades to develop. But that means people will have to change their behavior. For their entire lives. Stop stuffing their faces with junk food and soda, take their blood pressure meds, exercise - all that everyday health care stuff that people refuse to do.
Weight control and blood pressure control are at the heart of kidney disease for most people. I'd like to see more pressure put on them to make the "lifestyle" changes we know will reduce kidney disease. Then maybe we apply the savings to finding ways to treat the remaining causes of kidney disease - those out of the patients sphere of control.
11
@seattlesweetheart Actually, just a little more than 50% of ESRD is caused by diabetes and hypertension, not the 99% you claim. And how exactly do you prevent type 1 diabetes, which usually strikes during childhood?
5
I was diagnosed with “minimal change” or “fsgs” in 2005, fsgs determined in 2006. I was told to expect kidney failure in 5 years, I was really careful to follow diet and other guidelines and I made it to 7 and started Peritoneal dialysis in 2013. This was not decades in the making as you presume. The disease was caught accidentally. Most people don’t know they have kidney disease until the kidneys have failed or they are in stage 3 or 4 Chronic Kidney Disease (CKD).
6
I worked in Nephrology for over 40 years. My experience is significant including: kidney transplantation nurse at one of the leading centers in the world, staff and later director of one of the largest home dialysis programs in the US, later worked closely with both large (ie DaVita and Fresenius) and smaller providers of dialysis services as part of a company which sold products to these providers. The only reason I listed the above is to demonstrate that I know of what I speak.
During the past decade (or longer) the Medicare reimbursement for dialysis is based on a pre-set “bundle” fee. This bundle is to reimburse all of the expenses incurred by the dialysis provider. If the providers “costs” are below the bundled rate they may show a profit, if the costs exceed the bundled rate the center looses money. While this reimbursement system achieved some of the Medicare financial goals it had one very negative consequence. Innovation has essentially ended. I once asked a Chief Medical Officer - “if we brought you a product that is ten times better than the one you use now, will you use it”? He said sure we will use it, we just won’t pay any more for the new product .... we cannot afford it. Instead of focusing on continuous improvement, the providers large and small now focus on cost containment.
29
It would be far better for the administration to get behind a serious initiative to support the R&D of the artificial kidneys currently being developed. Living and cadaver sourced kidney transplants are not all they're cracked up to be. I know from experience, I've had one, and I've been a dialysis patient for nearly 20 years.
14
So sorry OC. That's awful that you had to endure the transplant and still have to be on dialysis. :(
6
Encouraging in-home dialysis and the Redesign Dialysis competition are all well and good. But it’s time to think beyond dialysis to complete regeneration of one’s own kidney.
4
@Jim That would be the ideal solution. But the control mechanisms behind kidney growth have proven to be incredibly complex. Unfortunately, we’re left with trying to take a shortcut around hundreds of millions of years of evolution or the intelligent design of a higher power (go with whatever you believe).
1
I had Polycystic Kidney Disease (PKD) as a mutation with no known predecessors with it. I also had heart disease from two other mutations. After taking both diseases to end stage and just a few days before death, I was gifted with a dual organ transplant of hear and kidney. The kidney took a few months to "wake up" completely and I was on a diminishing regimen of dialysis as both organs figured out how to live in their new body.
Yes, the immune suppression meds can be expensive (with insurance coverage) mine for both organs run about $75 per month but I know some folks that pay$1,500 per month. But my time on dialysis lowered my energy but cleaned my blood along with eating up 4 hours a day, three days a week. Being in the dialysis centers was mind-numbing and it was frightening to see how worn out so many of the other patients were.
I was lucky. I got heart and kidney transplants that have been amazingly successful letting me go back to work and a full life after only 6 months of recovery. And it was all because the family of a 20 year old who died way too young was willing to provide the gifts of his organs to many waiting for life. Please, please sign up to be a donor. Thanks.
37
Your story was very uplifting!
I've been an organ donor since I was 18 years old. I still am, but my question is: are my organs still acceptable for transplant at 64 years old? Do organs 'age out'?
8
@Susan
No, not really. Completely depends on the health of the donor, “ rules “ of the Transplant Program and Surgeons preference. Most important factor: Biopsy or Biopsies will be done on the potential donated kidney, everything will be checked, to ensure proper function. That’s my Job. I’ve also been a Donor forever, also for Bone Marrow. Still waiting for the Call, and I’m 60.
Cheers.
9
@Susan
More transplant centers have become willing, in recent years, to accept kidneys from older donors. If the kidney's function is good it is acceptable by many transplant physicians and recipients, especially for older transplant patients. They used to want donors to be under age 50, but the need for kidneys has opened many minds to the viability of older kidneys so long as the kidneys are generally healthy.
6
I started Dialysis 3 years ago, we tried 10 people, without success, to get a transplant. I attend Da Vita twice a week but I feel there is no clear information on your place on the waiting list to receive a kidney. How come we hear so often that celebrities got a kidney after a short time? Once a doctor sends you to a dialysis clinic that's it. Hes/he stops only once in a while at the clinic to say hello. By reading your article I now realize that the doctor has a direct financial interest in making sure I attend the clinic. It is extremely disappointing to see that you are practically waiting to die.
6
@Tia Gloria Wait times for a cadaver kidney are far lower in some areas of the country due to a variety of factors. The Scientific Registry of Transplant Recipients is a great place to start a search. You’d have to be able to re-locate temporarily near the transplant center - follow-ups are frequent and hours can be rough - but the maximum relocation time would be 3 months.
Good luck. Don’t count on your physicians to go out of the way for you (or anyone else). And ask everyone you know for whatever help they can provide in finding you a living donor. Few people have the resources to take several weeks of unpaid leave to serve as a living donor, but pooling many people’s resources, e.g. 20 coworkers who could give 4 hours of leave apiece, may prove more doable. And if you don’t think your nephrologist cares about you, find another one - you shouldn’t be lacking for choices in a major metro area like NoVA.
2
Wow. Republicans are interested in kidney treatment when a family member is sick. Other diseases? Not so much.
11
According to article, 15 million family members are sick with chronic kidney disease. And it is worsening with the epidemic of type 2 diabetes. Let's all get in Trump's corner at least on this crucial issue. We can hate the messenger, but the message is very commendable.
10
@Cathy Smithson
Just saying there are millions of Americans suffering from different diseases and lack of quality health care. Curious why these people’s diseases or insurance needs aren’t of interest.
6
1. Executive order is not the way to pass legislation like this. I hate that this is the new normal.
2. Trump is attempting to snuff out his weaknesses, most glaring are the treatment of migrants, the environment, and health care, and he is taking these one-time stabs at addressing them. I doubt we'll ever hear about the environment or kidney care from him again.
15
"Mr. Trump signed an executive order directing federal agencies to educate & treat people w/ early forms of kidney disease, to make transplants easier to get, and to shift the financial incentives for clinics & doctors away from the existing system that relies heavily on dialysis."
"The result will be more and faster transplants for those in need,” said Mr. Trump, who also said his administration would work to encourage the development of new treatments like artificial kidneys (an artificial pancreas is under development). How exactly is he going to accomplish this?
There are more than 100,000 Americans currently on the transplant list.
A few things:
Trump, and his entire family, if not already donors (which I doubt and it is against Jewish law so Ivanka and Jared get a pass) should be as should Alex Azar's entire family. Good publicity campaign.
To Trump's point of educating and treating patients with early-stage disease how does he do that if he gets rid of affordable healthcare? Kidney disease starts long before the patient is symptomatic.
Second point - a lot of kidney disease is the result of under diagnosed Type II Diabetes. School children need healthy meals that they seem to enjoy, not carbs, to make any progress. It's been shown that carb-heavy food can cost the same; some kids don't even know what a vegetable is. Families need to be taught about nutrition and how to shop; these are all social service programs that the GOP doesn't want to pay for.
17
@BG
Judaism certainly does not discourage organ donation. It is considered a life-saving act.
7
Organ transplant is permitted in Judaism.
2
Donald Trump now cares about someone else?
What’s in it for Trump and the Trump family? There must be money to be made.
I don’t believe a thing he says.
17
Dialysis has become too profit driven, and dominateed by two companies - Fresenius and DaVita. Corporate officials shrink clinic staffing, while increasing patient counts. But give themselves bonuses and their staff lavish holiday parties..for exceeding ever decreasing financial goals. Profit over people
9
How about affordable health care for ALL Americans?
12
I met a guy who did home dialysis. He doesn’t recommend it now that not only his kidneys are gone but now he has a bad heart to go with it. I wouldn’t trust ANYONE in this admin with my health.
6
@Vivien Hessel
And yet one of my dear friends has been using home hemodialysis for over a decade and it has not only kept her alive but has allowed her to LIVE her life, working and traveling (she actually can take a portable unit with her!) and creating art and being her wonderful self. Like all medical procedures and interventions, response to home dialysis is very individual. For most patients it works well.
3
This is what We The People should demand for "healthcare".
Responsible, Universal, Constitutional, Health Insurance (RUCHI)
1. Legalize, tax, regulate all drugs and dedicate ALL tax revenue from drugs, alcohol, and tobacco to ONLY being used to pay the subsidies for the drinkers, druggies, and the tobacco users AFTER they get sick. Not before,, only after.
2. Establish a National minimum plan for a non-drinking, non-drugging, non-tobacco using, safe physical activity participating, non-promiscuous sex person that does NOT include any religiously objectionable services and BAN the States from adding any extras provided the Insurance Company offers the policy to EVERY U.S. Citizen anyplace they live.
3. Require the Publicly Traded Insurance Companies to offer riders for the druggies, drinkers, tobacco users, dangerous activities, promiscuous sex and ALL the religiously objectionable services.
4. Mandate a MINIMUM surcharge/rider price for all policies for ALL people drinking, drugging, using tobacco, (mandatory hair sample testing) engaging in risky behaviors and promiscuous unprotected sex (identified by the first treatment for ANY sexually transmitted disease).
6. Let the insurance companies compete for the religiously objectionable business.
7. Only provide subsidies for the National Basic Plan, not any riders.
Will there be mandatory exercise sessions, sport of your choice? I can’t wait to join. Exercise is the best validated improver of health.
Only BMIs under 25 need apply? I notice you didn’t mention that. Why not? It’s a very easy way to judge others.
Actually, let’s restrict it to vegans. That will really improve our outcomes. And that’s totally a choice too, just like “drinking and drugging.”
3
This is a great development although it is probably motivated more by the cost of kidney disease care to the government rather than an interest in kidney disease itself.
Nevertheless, I'm surprised this article didn't mention the great work being done at the University of California, San Francisco on a bionic kidney and a novel approach to dialysis, which is partially funded by the National Institutes of Health. We may be closer to a solution to end stage renal disease than we think. Check out the program here: https://pharm.ucsf.edu/kidney and here: https://pharmacy.ucsf.edu/news/2019/05/kidney-project-earns-kidneyx-award-make-home-dialysis-better-patients
8
@A. Jubatus
I am very familiar with this research, and when it comes to fruition it will be a true game-changer for countless people who are waiting for transplants, or who for some reason (usually a recurrent form of kidney disease or high HLA sensitivity) cannot be transplanted. This project is worth federal money and total public support.
2
@A. Jubatus That group has been working toward an artificial kidney for almost 25 years. I suspect they’re not nearly as far along as CKD patients would like to think. The challenges, especially blood clotting, are daunting.
3
WOW. Excellent.... and long overdue...
Dialysis was in part intended as stop-gap for people waiting for a transplant. It costs about 100K per person per year. (Correct, if wrong.) It is a big business -- provides many jobs.
Many people indeed could perform this at home ALONE... but going to the center has a certain social component and it's something to do for people who have little to do and might otherwise be very depressed. (How we use time is a huge issue.) It is exhausting. for the person involved (a four-five hour procedure.)
Finally, some options are out in the open!! BTW various state laws might dictate an age limit for a transplant. And obviously, a person's overall physical condition might mitigate that possibility.
3
I spent about 9 years on dialysis before receiving a "high risk" cadaveric kidney. My kidney disease had a genetic component -- I had Polycystic Kidney Disease and, interestingly, I was the mutation -- no known history in either side of my family. So, there was no possible prevention as my form of the disease didn't present until I was in my 40's. Most of my fellow dialysis patients developed kidney disease secondary to Diabetes. Many refused to follow the prescribed renal diet, and often had complications just owing to this factor.
I was offered the opportunity for home dialysis, but passed because of the difficulty of storing supplies and the discomfort of peritoneal dialysis. I don't know if hemodialysis is an option for home treatment given the requirements for sterile supplies, etc.
Convincing more people to become both live and cadaveric donors is essential. I owe my current reasonably healthy status to a guy from Reno who lived rough, but carried a donor card. Didn't know him, of course, but I know that every day I am still alive is a gift from him.
I am not a fan of the current administration, but this is a good initiative -- if it planned and executed properly and resourced appropriately.
18
@Rick Green
About 1% of all dialysis patient in the U.S. are currently on home hemodialysis (as opposed to peritoneal dialysis at home). It is a good modality for those who can do it.
6
@Rick Green
Hemodialysis can be done at home..
2
There are several research programs dealing with artificial kidneys, implantable and wearable. There are also stem cell therapies.
That $100billion cost could be reduced by breaking the chain of being tied to that machine 3 days a week. The dialysis providers bill medicare $180K a month for my wife's dialysis.
I agree this may be the first initiative I can support. Covering ESRD by Medicare was also an unexpected program from Nixon admin. Get some science back in the health programs and provide government support the USF/Vanderbilt artificial kidney.
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@Rick B
That bill sounds very high. It might be what the provider bills Medicare, but I believe that Medicare reimburses about $90,000 per year total (somebody check me).
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@Tim, it is not. My dialysis runs at around $12,000./Mo.
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This isn’t a plan, it isn’t anything. After the ACA is abolished kidney disease will skyrocket because people will lose access to healthcare and their diabetes will get out of control.
You can’t repeal, not replace and improve access to healthcare all at the same time.
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Any thoughts on aggressive prevention programs to combat kidney disease BEFORE it requires dialysis or transplant?
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@Colleen
I believe that is what the president meant in referring to early prevention of dialysis. Aggressive blood pressure and blood sugar (in the case of diabetes) control can at least slow the progression of kidney disease in many cases. Part of the problem is that many primary care providers do not refer their patients with early chronic kidney disease to a nephrologist until very late in the game.
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@Colleen
I had the same question. My 8 year old was diagnosed with Stage 1 Congenital Kidney Disease five years ago. After surgery the doctors said we just watch, wait and see how long his one “contributing kidney” will last. They said they don’t recommend diet changes until Stage 3. I considered that an unacceptable (and, quiet frankly, unprofessional) answer so I did some research and implemented a low sodium diet as well as a modified kidney diet for the whole family. (Kosher salt has half the sodium of other salts, btw) My thought was that eating is a habit and learning good habits early would be easier than making uncomfortable changes while also dealing with declining health and medical bills. Four years in his blood pressure has dropped from the 90 percentile to the 50th, he’s growing like a weed, feels fine, and the kidney is doing well. Doctors call it luck and good genes. I call it self education and consistent effort.
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@Colleen A cure for a progressive disease? I'd love one! i
Kidney disease treatments have had little advances in decades. Meanwhile, patients and their providers are offered few poor choices. Kidney transplants are incredibly successful if done while recipient is relatively good health. The longer the wait, the worse the outcomes. The donor, ironically typically have more post surgical complications than recipients... hardly a motivation to those that are in the throws of emotional decision making.
Whatever the reason for kidney diseases, it’s imperative treatment is more cost effective and safe. 7 percent of Medicare dollars spending unchecked will NEVER innovate.
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@Tina B
Most donor nephrectomies (that is, removal of a kidney from a living donor) are done with a laparoscope these days. That means that the donor's hospital stay is usually much shorter than it used to be and that complications are fewer.
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Well written article and informative responses. One issue that was not mentioned is that the cost of anti-rejection medciations have become unaffordable for too many transplant recipients.
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@ML Sweet
Medicare typically pays for anti-rejection medications for 3 years after transplant (if your transplant was paid for by Medicare). After that, many recipients are unable to afford even the co-pays for the medications and depend on patient assistance programs from the drug companies. Some people will just try to stretch their medications or not take them at all. As you mind imagine, they lose their kidney and must return to dialysis.
There has been a proposal before Congress several times (including now) to extend anti-rejection drug coverage by Medicare for the life of the kidney. This would actually save money in the long run.
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I had a living donor transplant in 2003 and am waiting for another after 12 months on dialysis.
There is a severe shortage of organs because people are unwilling to sign donor cards or honor the wishes of their loved one. Think that Trump or any of his family have had donor on their license for many years? I think that if you haven’t done so, you should not get a cadaver organ. Many countries assume you will donate, unless you opt out. Basically do unto others as you would have them do unto you.
I see many, many patients come through my dialysis center. Many of them are extremely compromised physically and mentally. Frequently they have serious medical issues - major bleeds, passing out and stopping breathing. People are frequently hauled away to the hospital. The goal of shifting 80% to home dialysis would result extremely poor quality and preventable deaths.
Trump’s idea is all about the money. Medicare spends less, helping to pay his tax cut. For companies it is more profitable, as highly paid staff get laid off, as at home patients and their caregivers maintain their equipment, order supplies and provide space. They also keep things sterile and handle emergencies. Trump might even profit via campaign contributions and stock holdings.
If you want to redesign the system, don’t go with the half baked ideas of Trump delivered by executive order. Run it through Congress and give those who live with and provide services a chance to be heard.
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“If you haven’t done so you should not get a cadaver organ”
Not sure where you were going with this comment.
As if someone needing a kidney with no live donor offers that are a match has a better option. So you are saying stay on dialysis, unless there’s a live donor available. Average life expectancy on dialysis is five years. Cadaver kidney transplants lasts 8-10 and live donor kidney lasts 12-15. Those are the lengths the kidneys last not life expectancy. Some people have multiple kidney transplants. What you’re saying doesn’t make sense
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@Chandler I think Joel meant that if one was not willing to donate their organs after death, they should not benefit from the generosity of those who were willing to donate after death.
In short, you can't win the prize if you refused to play the game.
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@Joel Stegner
If you are compromised medically and don't have viable organs to donate (as is frequently the case), you shouldn't receive a cadaver organ? I have PKD and I can assure you no one is going to want my multiple organs damaged by cysts. I'm not an organ donor for this reason. So therefore I shouldn't receive a cadaver kidney when the time comes?
Not everyone is a candidate for peritoneal, but many are and have been locked in by brick and mortars for obvious reasons. I can see why you don't like today's proposals.
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Patient quality of life aside, this policy shifts ongoing payments from DaVita, Fresenius and other dialysis providers to the pharmaceutical industry as anti-rejection drugs have to be taken on an ongoing basis after kidney transplant. For some reason I am suspicious about the underlying motivation of this policy.
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At home dialysis can be difficult and emotionally exhausting too. Medicare delivers a 30 day supply of fluids and peripheral supplies that must be stored. Bags of fluid weigh many pounds, and must be lifted and drained. If your bloodwork warrents, your solutions may be changed by the doctor and a new supply delivered. Unused solution is not returnable, and must be flushed away. The amount of plastic waste is incredible. In my son's case, his doctor required 10 hours of dialysis nightly. Being tied to his 'machine' nightly was very difficult. The hope of the artificial kidney, being developed and tested in San Francisco, is the true hope for all people with kidney disease.
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Thanks. This article should have provided much more information on in-home dialysis as compared to dialysis in a clinical setting in order for the reader to form an opinion about the pros and cons of each.
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"The total cost to Medicare for kidney care each year exceeds $100 billion."
Why is this kind of treatment so ridiculously expensive? The "free market" is one thing, but this kind of overcharging to boost profits by the medical industry calls out for some kind of federal intervention -- perhaps forced price controls. If medical professionals are getting rich on this travesty, then action must be taken to lower these costs.
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@Scott Dialysis is incredibly expensive for many reasons. It requires an incredible amount of supplies, all of which must be sterile (infections of the blood or peritoneal cavity rapidly become life-threatening and require long hospitalizations), produced by a limited number of companies. It requires a lot of blood work so that prescriptions can be updated to match need. It requires the labor of many doctors (not just nephrologists - kidney disease causes bone deterioration, cardiovascular disease, and diabetes, among other things), nurses, and medical assistants. Consolidation in providers has driven up prices.
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@Scott - For a fabulous explanation to your question, read this article: https://www.theatlantic.com/magazine/archive/2010/12/-god-help-you-youre-on-dialysis/308308/
Very eye opening and completely changed my view on this topic.
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"Mr. Azar has made kidney disease one of his priorities because his father needed dialysis for several years and later received a kidney transplant."
I do not doubt that chronic kidney disease needs our attention. However, I do think that our public policy should not be prioritized based on the personal experiences of public officials.
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But it so often is! How many public figures become the face of a disease support/research charity only after it becomes a part of their private lives?
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@nowadays. So you would rather he expressed no interest? How do you think donations and charities get started?
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I don't think there is anything wrong with people advocating for what they think it's important. There are thousands of people advocating all the time for what they think it's important. It is the job is the executive to decide what is important and what is doable
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How about making organ donations an opt-out process instead of opt-in? Everyone is automatically an organ donator, unless they opt out. Several European countries do this with much success.
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Those opt-out systems are sadly heading in the wrong direction as more and more people are registering to opt out
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@Ann Porter and exactly how do you see that happening?
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@Ann Porter And would should people be forced to have their organs taken at death just because they forgot to fill out a card opting out? Sorry, but if your organs are failing, it's time to accept that you are dying. Why we spend millions of dollars trying to keep people alive when their bodies are failing is beyond me.
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My father underwent dialysis for almost 40 years, and the only reason he was able to live for so long and to have a life outside of his illness was through in-home dialysis (which he had to fight for). This may be the first Trump initiative throughout his entire god-awful presidency that I support.
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@Matt O
In-home dialysis is well worth fighting for, and good for your father for doing so. It's not perfect, but for suitable patients (and regardless of what many nephrologists and most dialysis centers will tell you, the majority of patients ARE suitable for it) both quality of life and longevity are much better with home dialysis than with in-center dialysis.
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This article is written as if the leading cause of kidney disease is someone going around and punching people in their flanks! The issue isn’t kidney injury, it’s terribly uncontrolled hypertension and diabetes. This is not a problem physicians aren’t aware of that can simply be improved through education of physicians, this is a societal problem that requires behavioral change
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@Michael Tudeen
Autoimmune diseases are also a major factor in kidney disease. It's not all about smoking, alcohol, and diet.
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@Michael Tudeen Diabetes and hypertension only account for slightly more than half of end-stage renal disease, over most of which the victim has no control. And how exactly do you prevent Type 1 diabetes and genetically-driven hypertension through behavioral change other than abortion or euthanasia?
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@Matt
Your numbers are off- its closer to 2/3 of cases, and as far as the diabetes goes, the great majority of those cases are type II. More importantly, the target of this 'plan' is off base. It is cool to talk about fixing transplant services, and even treating kidney disease earlier, but without good primary care these cases will never be identified in the first place. The majority of people who end up on dialysis have been diagnosed with kidney disease for less than a year. The best way to deal with this problem is to guarantee primary care, so these cases can be identified earlier. I have no problem with fixing the transplant system and pushing home dialysis, but the idea that we are going to prevent people from progressing to ESRD without guaranteeing primary care is misguided.
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