Executive Order re: Kidney Dialysis, Organ ... - Kidney Disease

Kidney Disease
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Executive Order re: Kidney Dialysis, Organ Sharing, etc. Signed

A link to the July 10, 2019 Executive Order signed by President Donald Trump:

rsnhope.org/kidney-disease-...

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Special thanks to Alex Azar, Secretary of HHS for pushing this. His father has had ESRD for many years and was instrumental in getting this pushed through. It also didn't hurt that the first lady had a benign kidney cyst embolized in May of 2018. I'm now out of nice things to say so I'm going to stop here,

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Agreed about the nice things to say. I do hope it will help. Let's see Congress fight about this.

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On second thought, this is kind of like locking the barn after the horses get out. It would be nice to put some pressure on the medical field to provide pre-ckd education and even more, ckd education once a person has been diagnosed. Am an active member on this site and a silent follower on two other sites, and I am appalled by the ignorance exhibited by so many primary care physicians and nephrologists. It seems unless you have the determination to help yourself, you do not get a lot of help from so many in the medical field. I have even thought about the possibility of class action suits regarding the lack of information regarding prevention and maintenance/improvement.

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Lowraind, I couldn't agree more.

My current nephrologist is leaving his practice to head back to a teaching hospital to help direct new physicians in the importance of early detection and the equally important part of patient notification. He was supposed to stay in his practice until early fall but I just learned that my next appointment in early August will be with the new replacement nephrologist. Hopefully, other teaching hospitals and medical schools will take note and begin similar programs.

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Mr. Kidney, maybe you can help me understand this executive order. Someone told me that the President wants those on in center dialysis to go to home dialysis! Is this true if you know the answer? I would never go to home dialysis do to certain reasons and the in center dialysis is the one and only way I would want to get dialysis. I am hoping you will say that this is not the course he is trying to pursue. Waiting for your answer or an answer from anyone out there who reads this. Thank you all for your input.

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It just a choice for those who want to do home dialysis...right now Medicare doesn't pay as well on home dialysis as they do in center...and as you probably know in centers get overbooked in many areas...especially small towns...Alot of people who feel confident (after training) to do their own should not be penalized and it saves more space for people like you who can't do their own for various reasons..

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Thanks for your input

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I do not know if I can effectively explain the entire executive order, but I do know that Medicare for years has been pushing for the home PD method of dialysis simply because of a cost factor. It is cheaper for them to have patients doing PD at home than it is in-Center. I do not believe that they are going to force any in-Center patients to go on a home hemodialysis program, but my nephrologist has been telling me for years that PD is Medicare's preferred modality for dialysis.

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Thanks for your input

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The nephs like it because it is constant ...4 times a day instead of 3 days at a center...which makes sense to me...some centers are so full and a lot of people have to travel a distance to get to them...the PD also takes the water off better too...plus you can make your own schedule that fits you..a lot better on your veins also because you are using a cath to put it into your tummy...some call it Natures Third Kidney

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I met with a local group of new CKD patients and dialysis patients today. The subject of the EO came up and most all agreed that it was to primarily get the medical profession to inform people that they were in the early stages of CKD, to make the insurance companies aware of the benefits of coverage for RD's sooner, and to provide more training and support for those who wanted an alternative to In-center dialysis.

HHD can be an alternative for many if doctors and insurance companies got on board for those who want it, can do it and have the support of their nephrologist. By allowing more folks to transition to HHD, it would ease the burden on centers and could possibly make scheduling for a center time more flexible and take some of the stress and strain off of center staff and technicians.

I spoke to the group of 18 and the exchange of ideas and suggestions for dialysis options was varied.

About a third of those on dialysis wanted to transition to HHD another third were planning on staying with PD, in both forms. Those that were doing in-center felt that because of their other health issues they had to stay with in-center dialysis.

For those not on dialysis, almost all wanted more options other than in-center. I've already made the decision on HHD but on my most recent trip, I met a nurse from a dialysis center who suggested, and for a variety of reasons, that most folks begin on PD and if desired begin to transition to HHD if that was their choice.

Nobody felt that in-center dialysis was going to be phased out.

I hope that answers your question.

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Thanks for your input, it puts my mind a little at ease.......

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I was interested on how the EO will compel employers to provide FMLA or other lost wage benefits for recuperation to employees who donated a kidney. That component seems to be lacking in the mix today. It certainly MAY bring more donors forward, imho.

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That question did come up and a couple of folks seemed to believe that corporations were being left to figure out on their own about making this work. More details are forthcoming and so are meetings with the CEO's, Insurance reps and HHS officials.

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It is ghastly expensive to fund CKD and it is less expensive to fund home hemodialysis and peritoneal. Remember your life saving Fresenius, DaVita, US renal Care or whomever is in center dialyzing you is making a mint! They are billion dollar corporations! Not everyone has the stomach to hemodialyze themselves for sure nor does everyone have caregiver resource to assist at home, on the other hand some people live miles away from their dialysis centers though too and in home would help those people and certainly radically alter their quality if life! I understand your fears but there is no referendum to cease allowing people in center dialysis care. Keep fighting the good fight.

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Thank you for sharing this. So grateful that I have a president who has stepped up to help. Don’t understand why everyone can’t just be grateful and leave the snide remarks out.

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One of my other non kidney doctors had nasty remarks. She is just anti-Trump, always has "The View" playing when you walk in, always making little comments... but I had not heard about this yet and she was already talking bad about it, I tuned her out but later after I read about it I laughed how a non kidney doc would make fun of something she has no ties too. Some people always make it political.

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Some are just clueless!

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If she were watching The View, she's an idiot. That shows should have been cancelled years ago. I have not talked to one woman who cares anything for or relates as a woman to that show.

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How do you really feel?

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Lol.

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The only reason I responded was on my most recent trip I visited a Dialysis Center and when they walked me in the women were being dialyzed around two TV's and both were tuned to The View and the men were around another TV watching a football game from 10 years ago. Two people were not watching and they had on headphones and were listening to audible books.

When I go to a doctor's waiting room before an appointment I usually see the TV on to CNN or The Weather Channel. My dentist has a TV in each room and the techs always ask what channel would you like when I get in the chair. I always tell them to turn it off.

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I suspect The View has some sort of hypnotic voodoo going on. I cannot stand any "round table" show where the guests, hosts, commentators or the like are all talking at the same time. It is annoying and raises my anxiety!

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Aside from the rudeness of talking over each other the show's ratings seem to be strong enough to keep it going for many years and the ladies in the dialysis center did seem to enjoy it.

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While I’m hopeful for advancements in the care of those with chronic kidney disease from this E.O., I have my reservations. Alex Azar was the one who doubled the price of the top selling insulin. This caused individuals to ration their medicine, which who knows how many then developed kidney disease as a result of not being able to manage their diabetes. Secondly you have a lawsuit against the ACA, which provides protection for those with pre-existing conditions and if that protection is lost can affect millions of individuals. That will include a lot of us suffering from CKD. When we see drug prices go up and not down, even though promised by the current administration. I have my reservations, considering that over 3,000 branded drugs have gone up in price and only 117 have gone down, lawsuits and talk from legislators removing protections for those with pre-existing conditions, and Alex Azar being the head of HHS. I personally feel it’s a wait and see if any of this comes to actual fruition.

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Exactly.

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Agreed—this is one of the main reasons I’m determined to keep working for another 5-6 years if at all possible. I’ve got good medical insurance through work. I’m concerned about the entire situation in Washington and don’t trust it enough to feel comfortable retiring no matter how difficult it is for me to continue working. Although, I’m incredibly fortunate that my job allows me enough flexibility to get to and from the many doctor Appointments and labs that are now a regular part of my life. Many are not as fortunate with their employment situations. So I’m very thankful for that even as my concerns about Medicare and other medical insurance-related issues continue to rise.

Jayhawker

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I hope you use your voice on social media forums, such as Twitter, to inform the public about Azar's participation in the prescription drug and Insulin issues. I personally, as well as thousands of others, posted many tweets regarding secretary Acosta and the recent Jeffrey Epstein issue. At first, Acosta was not going to resign and resorted to lying about what really happened with the plea deal for Epstein. The next thing you know, Acosta is resigning. Bringing these issues to the public is the only way we have sometimes to make our voices and our displeasure known.

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In case other CKD patients were not aware, if you file for Social Security Disability Income and are awarded the same, you have a very short window in which to get a Medicare Advantage policy. The reason is that Medicare Advantage insurers will not accept a person who is already in ESRD. Unfortunately, you must wait two years after being accepted for Social Security disability, SSDI, before you are eligible for Medicare. It's a long wait and you must keep yourself healthy and in a CKD stage. I worked with SSDI when working with lawyers but was not aware of the Medicare issue. I just barely got in under the wire with my CKD stage 4 and was able to apply for a Medicare Advantage program. A Medicare supplemental policy was too expensive for me at the time since I had to quit work and was on SSDI.

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Let me also add that the American Kidney Fund will help with insurance premiums for those who qualify under their HIPP program. Following is a description of the HIPP program as well as a link for more information and an application.

"Health Insurance Premium Program (HIPP) If you have kidney failure and have health insurance coverage but are unable to afford the cost of your premiums, the American Kidney Fund's Health Insurance Premium Program (HIPP) may be able to help. ... AKF is an independent nonprofit organization."

American Kidney Fund › health-ins...

Health Insurance Premium Program (HIPP) - American Kidney Fund ...

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If care and options for Kidney Disease is difficult now...wait until Government ran Healthcare and Rationing begins. I hope for funding to bring the artificial kidney into reality.....soon...

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Yes, the artificial kidney project is one I’ve been watching closely for several years. It would be a major game changer for people with renal failure; although, I’m not sure I’ll either live long enough to benefit from it personally or be healthy enough to qualify for the artificial kidney should it become available during my lifetime. But I’m watching that research project very closely. Even if it is too late for me, I’d love to see it become an option for others in the near future!

Jayhawker

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Me too Jayhawker...I worry about my Children and Grandchildren...as the risk of inheriting ckd is not fully known..it would a game changer world wide !!

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Yes, I’m convinced there is more going on with heredity and CKD than is known at this point. Not only do I come from a family where CKD is the common serious medical issue, I keep running into others for whom this is the case as well.

Add to that how perplexed my nephrologists have been with my case. While diabetes was the trigger for my chronic kidney disease, my A1C has been 100% in check since it was diagnosed. It took three months to pull my A1C into the normal range, eg, from January through March of 2011, it has not been out of range once since then. I’ve been off meds since August of 2013. So I control my A1C without medication. It comes in between 5.0 and 5.1 every three months and has done this consistently since March of 2011; for the last six years without medication support.

Thus my first nephrologist had expected we’d be able to stabilize my renal function when I had about 45% function left. I’ve followed the dietary and fluid restrictions religiously. I’ve taken my meds religiously. I’ve attended every appointment. I’ve exercised and lost weight. All of this has been for naught. My renal function has continued to deteriorate.

A biopsy has been done. They found nothing but the diabetes causal factor. But to a nephrologist they have been puzzled as to why this fairly rapid deterioration when my A1C is not an issue... and no blood pressure issues until my renal function fell into Stage V.

So, I suspect there may be more hereditary issues involved with all of this than they currently know or understand. Consequently I’m keeping my fingers crossed with regard to the artificial kidney project. It’s looking somewhat promising. And, if it would come to fruition it would be quite the game changer for renal care!

Jayhawker

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Yes..the implantable artificial kidney does look promising...the biggest issue it has is how to prevent blot clots from it...they also had the same problem when developing any implantable organ...and they will get the bugs worked out for this one too...I have heard human testing could begin within the next couple years...and be available by 2023 ..2025...are you on dialysis yet ?

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Yes, that’s my understanding as to what’s holding the human testing up on the artificial kidney project as well. They’ve been saying they expect human testing within a year for a few years now though. Part of the problem appears to be related to sustained finding and the other is the blood clotting issue you mention.

I’m 66 on August 3rd. I’m still not on dialysis but have been in renal failure since early January 2017. The nurse practitioner I saw last Wednesday for my first appointment with her since shifting nephrologist’s on May 30th was certainly surprised to see that I’m still not on dialysis. My creatinine is now consistently coming in at 3.1 with an eGFR of 15. But my BUN has elevated to 73. That and potassium management along with severe anemia are my main issues.

She advised me not to move forward with a colonoscopy this summer as the prep for it could cause further deterioration in my renal function. So I’ve just cancelled the colonoscopy. Although, that’s a little concerning; my mother passed away from colorectal cancer. However, I think the plan right now is to try to keep my kidneys stable with eGFR at 15 as long as possible.

This nephrologist immediately referred me in for transplant eligibility testing as soon as he met me on May 30th. My first appointment with the transplant evaluation team is on Wednesday, July 31st. So, I hope to have a better idea regarding whether I’ll qualify for a transplant within the next 6-8 weeks. I’m not sure how quickly this transplant team moves through these evaluations.

I know it’s pretty difficult to qualify for a transplant, especially as we get older. So I’m going to arrive for the testing but am just taking this one step at a time. After talking with the nurse practitioner last Wednesday, I’m more optimistic. But I’m prepared for any news they will need to give me.

I just feel the clock running out for me with some of these treatment options—but I could be surprised. So, I am listening to my new nephrologist and his nurse practitioner. I’ll do what they suggest. And I’ll hope for the best while preparing for any inevitability. I’m so thankful to have found a better nephrologist! That had been a major concern for me following my move last summer.

Marj

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I am kinda in the same boat...age 62..gfr 16...creatine 3.1...except my electrolytes are all on normal range..my Neph is puzzled also...diagnosed me with FG...he has also been encouraging me for transplant..which I haven't made further steps on that...I have been trained on Peritoneal Dialysis...which is what I will probably go to...even though my Neph is dissapointed..he says after a while with that I will change my mind on transplant....I am just taking a day at a time...weighing the pros and cons and keeping an open mind...my problem is I still feel so good...other than tiring more easily...also Jayhawk....there is a documentary on Netflix that has an interesting opinion on how the mind and body work....if you are interested the show is....The Secret Law of Attraction...gives a nice prespective....

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Yes, I have been somewhat unsure about transplant testing as well. But I’m definitely not getting any younger. So I’ve decided to move forward with it. My first nephrologist had also wanted to refer me in for testing. But at that time I had about 28% function and it was fairly stable. Thus I was focused on keeping it stable.

My new nephrologist simply said, “We’re going to do both!” He meant work to maintain stable function with creatinine at 3.1 and eGFR at 15 while also going through transplant eligibility testing.

I’m able to keep my potassium in check with dietary management and sodium bicarbonate. He just increased the dose of sodium bicarbonate. This has allowed me to begin eating more potassium. So now I’m eating 2500-2800 mg potassium daily, before it was only 1400 mg daily.

I’ve wanted to try a vegetarian diet thinking that might lower my BUN but didn’t dare try it with the potassium restrictions. But Molly, the nurse practitioner, just strongly encouraged me to make this transition last Wednesday. It’s only required a change in dinner. I’ll still eat egg whites and some eggs. I can also still keep having a serving of Greek yogurt each day. So I’ve begun eating a vegetarian meal for dinner as of last Wednesday evening.

I’m definitely feeling and sleeping noticeably better already. I’m pretty excited about that right now. Plus, I truly love vegetables. So while I’m carefully measuring everything out, I’m so much more comfortable with this dietary approach.

My anemia is under effective treatment. So I suspect if my BUN would come back down into the 50s I’d be feeling pretty good. I’m not feeling terrible now; just pretty lethargic. That’s likely due to the elevated BUN from what I understand.

I haven’t yet been trained on PD. I’m not sure how soon they will move forward with that for me. I’ve been expecting it pretty much any day. Do you have your catheter already? Mine hasn’t been placed yet. Dr Lustig says that that can be done pretty much last minute because it heals fairly quickly...

I see Molly, the nephrology nurse practitioner, for another appointment right after Labor Day. They’re only requiring labs once every 2-3 months right now because they say my data is stable. I guess that if I qualify for a kidney there is an advantage to transplanting it before I’m put on dialysis; although, that may truly not be possible with me.

At this point I’m just somewhat tired of being in limbo. While I certainly don’t want to rush into dialysis, I also realize that it’s inevitable ... And the endless confusion I encounter as I see a new doctor; well, it’s just tiring. They won’t reach out to my nephrologist for confirmation with what I tell them and yet they clearly don’t believe me. I guess when they see Stage V on your patient data they automatically think dialysis and so believe that you, the patient, are unwilling to go on dialysis, etc. it’s just tiring.

Jayhawker

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We are in charge of our own ships...I do not have a catheter for Dialysis yet...actually I asked for one to be sure it healed in time..but my Neph said I didn't want to do that and that he would tell me when it got time with plenty of time to heal...if you get the port before needed I guess you still have to flush it...and other procedures...so I just wait...I like the PD for my treatment when needed..first of all it is gentler on your veins..which will be important if I decide to transplant or artificial kidney....plus I can do it at home by myself...the only drawback I see is the chance of Infection...which if you use sanitary and careful techniques should be fine....I trust myself for cleanliness over some nurse that will not have just me to care for...sometimes they get careless...I know, i worked i medical field for 20 years...saw some pretty dirty stuff...and as for docs thinking you need to go on dialysis..I say pppft...I will decide that...like I said...its MY ship..lol

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I agree entirely with regard to PD being my dialysis treatment of choice; and my reasons are the same. Plus dialyzing daily is closer to what our kidneys do than dialyzing 3 times a week.

If the artificial kidney was available right now I’d select that over a transplant in a heartbeat simply because it requires no anti rejection medications. I realize that the anemia would remain and that an artificial kidney would likely result in approximately 30% function. BUT, I believe it would be fairly stable function. I’m fine with dietary restrictions and fluid restrictions. I’m also going to be taking medications regardless of treatment option for the remainder of my life. But I think the medications I’d need with the artificial kidney could be less concerning than those I would need for the transplant. Of course at this point I have no idea if I’ll even qualify for a transplant...

Clearly I’m not a medical professional. This stuff gets pretty complex. So I do my best to understand my medical data and viable treatment options. Then I make my decisions and hope for the best. I just feel a bit like I’m lost in the maze of our medical system many days🐶

Jayhawker

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Yep...and with self administered PD

...we can throw a few bags of solution and supplies in the car and go travel a bit...and you are right..PD is a constant cleanse...one guy described it as nature's third kidney..I live in a small town with a small dialysis center....you are constantly put on a list and told when to come...makes me tired just thinking about it..lol...forget making any plans

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I remember when I was in the same boat as you are that the anemia was a great factor in my lethargy. Once I started getting injections of iron at the dialysis clinic, I felt much better. The lack of protein can also cause some lethargy or lack of energy. I have been seeing people talk about a vegetarian diet, but getting that protein is something I worry about, although you did mention you're still doing eggs or egg whites.

Please let me know if you have any questions about the testing for transplant. I just completed my second, 2-year evaluation for transplant. So far, they have not rejected me or given me any indication that I am off the transplant list. I just turned 64 years old in June. My nephrologist and the transplant team believe I am a very good candidate for transplant, however, because I live in the Atlanta, Georgia area and this region has a great need for kidneys (in addition to being an O+ blood type, the most common), it may take up to 10 years from my original transplant evaluation (2015) to even get a call. It is quite discouraging at times. I get grumpy and out of sorts when the 2 year re-evaluations come up. Although there are some members on my transplant team that I like, I have not been very successful with interviews from the transplant team Social Workers. They are very tough on a perspective transplant patient about their mental health and maintaining an active and relatively normal social life.

I also recently learned about the Hep C positive transplant program at my transplant facility. I believe Johns Hopkins was the hospital that started the first studies of transplanting deceased hep C+ kidneys and livers in patients waiting for a transplant of those organs. Since the medical community has found a way to eradicate hep C in hep C positive patients, they are now being able to save the organs that they used to throw away from deceased hep C patients. There are only a handful of transplant hospitals that are participating in this study.

I asked my gastroenterologist the other day if he would allow one of his own family members to be transplanted with a deceased, hep C positive organ. He said that he would have No Reservations about doing so. I may look into it again because as of this time, there are very few people that have signed up for the program at my transplant hospital. Unfortunately, my transplant facility will only pay for the medication necessary to eradicate the hep C from the transplanted organ. I believe they say it takes about two months to 12 weeks on the hep C medication and they have had no transplanted patients contract the hep-c virus after transplant.

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If you have a good link for information about the artificial kidney research, Jay Walker, I would love to get it from you. Thanks.

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Currently, the OPTN, Organ Procurement Transplant Network, is under contract with the US Department of Health and Human Services. Therefore, it is already being watched over by a government agency and probably has to adhere to strict government policies.

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Right; and Medicare is also administered by the federal government so I suspect medical professionals are already wading through lots of paperwork.

I work in special education, another program with federal oversight and, therefore, lots and lots of paperwork. Plus I run federal grants to provide tuition support for teachers coming back to school to add special education endorsements to their teaching licenses. So that’s lots more paperwork🐶

As a few others have said, I hope this heightened awareness of CKD will lead to medical treatment breakthroughs and so forth. I’m already seeing increased efforts to promote home dialysis rather than in center dialysis for those who can manage in home dialysis. I think that’s good. This heightened awareness may lead to drives to promote organ donation registration on driver’s licenses and so forth. That would also be very helpful.

In addition to the artificial kidney project at Vanderbilt and UCSF I’ve been watching the AWAK research project. A wearable dialysis option that allows 24/7 dialysis would also be a great innovation for those of us who do need dialysis.

There are some other newer projects starting that may lead to some very beneficial innovations for dialysis as well.

As far as the protein hoes, I definitely hear you on that issue. However, my new nurse practitioner indicated that some of the newer research supports the benefits of a vegetarian diet fir persons with CKD. I’m going to see a dietician for some professional help with this on Rhirsday this week.

For me, this won’t be a huge dietary modification. This is how my days have gone with good for quite awhile:

1. High protein steel cut oatmeal for breakfast (has egg whites and natural applesauce with cinnamon in it)

2. Five cake with 2 tablespoons peanut butter and raw vegetables for lunch

3. I used to eat a boneless, skinless chicken breast roasted and paired with a salad or roasted vegetables or fixed as roasted chicken fajita; now I’m eating a high protein vegetarian meal with the same protein count as I used to get from the chicken..,

4. Evening snack of Greek yogurt with frozen strawberries and blueberries

I’m eating a large egg with additional egg whites for dinner 2-3 times a week right now. The other days are a vegetarian meal.

I just really haven’t had any desire to eat meat protein for several months.

We’ll see how this goes. But my protein intake is the same—just plant based and eggs only now.

Marj

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This is NOT the site to be political. Let's just hope that this will put kidney disease out front and bring it some NATIONAL ATTENTION. To me, every little bit helps. Who knows, maybe the artificial kidney will become a reality soon!

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I agree WYOAnne....I hope it brings awareness...just that simply alerting people in early stages would be so helpful...even if it is just a class to explain ckd to patients...many people don't even understand what the kidneys do and that what you do and eat effects these precious little jewels so much...I feel fortunate that I actually have had excellent kidney care...I was alerted of it at stage 2...I credit that for helping me manage my kidney health for 20 plus years...I am 16 gfr now and feel good with no dialysis...prevention is the best medicine.....the rest is just treatment.

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Knowledge is everything! I know friends have no idea of the importance of your kidneys. I know with my kidney journey I have learned more than I ever thought possible. Let's hope this Executive Order will bring CKD to the fore front making the public, doctors, nurses, etc more aware of the disease and ways that diet, meds, and hydration can actually stabilize patients.

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Hoo Rah....the unknown is scarier than the known...

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I had a friend text me today and say that there was a news story on Fox last night about the Executive Order President Trump signed on July 10. I try to educate everybody around me about things that can degrade kidney function, including everything that you put in your mouth!

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I think it is pretty common that you don't care about something until it effects you or someone in your family. I too try to educate people around me about their kidneys. I was even asked to speak at my work regarding my CKD and my transplant. Here I am 19+ post transplant years still trying to educate people. I wish pre-transplant I had known about renal diets and how they could help. I was diagnosed with CKD in 1992 and had my transplant in 1999.

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Agreed

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Exciting news out of Washington! Here's another article to help understand what this means for kidney patients; kidney.org/news/president-t...

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Thank you for sharing this🐶

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