The White House is expected to release a new executive order on chronic kidney disease treatment priorities, rules and payment experiments this afternoon. This is outside of my area of expertise, but so far, the pre-reporting indicates that this looks to be both a big deal and good news.
I will let Dylan Matthews at Vox explain more:
The order has three major parts: one on living kidney donors, one on deceased donors, and one on alternatives to center-based dialysis.
The executive order attempts to reform the system for living kidney donors (like me), as well as living liver, lung, and intestine donors, by making sure donors are held financially harmless for donating…
The second aspect of the executive order targets deceased donation. In the US, there are 58 agencies with local monopolies over the provision of dead people’s organs, known as organ procurement organizations (OPOs). For some time now, independent analysts and investigative reporters have argued that OPOs are underusing deceased donor organs by the tens of thousands….
executive order scraps the existing evaluation system in favor of two simple, harder-to-game criteria….
the Affordable Care Act, in one of its lesser-known, cost-focused provisions, set up the Center for Medicare and Medicaid Innovation, which has the authority to pursue cost-saving treatments that improve quality of care. The executive order instructs the centers to experiment with new approaches to provider payment — like rewarding nephrologists for directing their patients toward transplants, and for preventing patients from progressing to kidney failure for as long as possible
Transplants are the big deal conditional on individuals advancing to end stage renal disease(ESRD). Transplants in the out years are cheaper than end stage renal disease dialysis while managing the chronic kidney disease (CKD) progression is far cheaper than end stage and transplants as shown in the 2020 ACA Adult Silver risk adjustment co-efficiencts for HCC 183, 184, 187, 188.
| HCC | Disease | Silver 2020 Adult Co-efficient |
| HCC 187 | CKD Stage 4 | 0.985 |
| HCC 188 | CKD Stage 5 | 0.985 |
| HCC 183 | Kidney Transplant Status | 6.035 |
| HCC 184 | ESRD | 24.75 |
Beyond the simple fact that a transplant in the out-years is cheaper, it often is a much higher quality and quantity of life than ESRD with dialysis. People with successful transplants aren’t tied to an exhausting local dialysis center with limited opportunities for travel or work.
The ideal payment models should be set up to make managing CKD at lower levels of severity to be more profitable for risk bearing entities than moving these individuals to first transplant and then long term center-based dialysis. Ideally, dialysis centers are merely a short term bridge to a transplant instead of a common long term quasi-solution.
The Center for Medicare and Medicaid Innovation (CMMI) is one of the core elements of this executive order. CMMI can come up with payment models that bypass Congress to see if a new way of paying for care improves quality and/or lowers cost for a constant level of quality. If the model shows actuarially sound value improvements in pilot projects, then CMMI can take the model national. The kicker is that CMMI is a creature of the ACA which seems to be under threat in the courts again. Without the ACA, the entire payment reform part of the executive order falls apart.
rikyrah
Hmmph
rikyrah
OT: I know that I’ve asked before, but, so you know anyone that could write a post about why insulin doubled in price over the course of 4 years? I smell greed and collusion.
I’m so disturbed by the stories that I read about desperate insulin-dependent diabetics and what they’re going through.
Ohio Mom
This is so out of character for the Trump administration that I am wondering what the catch is.
David Anderson
@rikyrah: I don’t have the knowledge to speak intelligently on this.
@Ohio Mom: Personal experience of quite a few people in power.
Baud
@Ohio Mom:
Perhaps there’s a catch. But, frankly, although Trump is given it the old college try, it is difficult for any administration to completely avoid doing a single positive thing over four years. Maybe this is Trump’s.
rikyrah
@Ohio Mom:
Someone has a company that will make money from it…we just have to wait for it to be revealed.
chopper
given rising temperatures due to climate change and the associated dehydration that comes with it, outdoor laborers are going to be seeing rising rates of chronic kidney disease in the future. might as well start doing something now:
Another Scott
Warning Politico:
Emphasis added. The bolded parts give me pause (if it’s a huge market and will be opened up, why do new players need ‘incentives’?). If Azar is doing a good job, then I expect him to leave within the next 6 months.
:-/
Me, cynical? Naaah…
“Follow the money!” –
Deep ThroatA. Silverman.Seriously, the devil’s in the details – especially with Donnie’s minions.
FWIW.
Cheers,
Scott.
Keith P.
I’ve been on dialysis for 9 years now, so I’m actually interested in what Trump is going to do here.
Ohio Mom
@David Anderson: I’ve always wondered if it wasn’t the personal experience of people in power that led to the socialization of kidney dialysis.
The explanation that dialysis is too expensive for private insurance to cover so the government took over left me wondering about all the other conditions that cost big bucks.
Of course one way the insurance companies got around those other expensive conditions was lifetime caps, and there is the safety net of Medicaid.
But why is dialysis is a category of its own, and not so many other chronic, life threatening conditions? Diabetes and insulin (as rikyah mentions) for one, or very involved disability (those people are in constant battle for what they need).
Barbara
@Ohio Mom: I have made this point before, but there seem to be two kinds of people inhabiting appointed positions in the Trump administration — the first are people like John Bolton, who has his own agenda and sees Trump as an ideological vacuum that presents an ideal opportunity for grabbing power to do what he wants, and some are people who have worked in various industries that are regulated by the agency who are there at the behest of companies or trade groups that would like to avoid chaos as a result of a regulator’s ignorance. Which is another way of saying that there are actually some very smart and capable people who are working at HHS, even in appointment level positions.
Barbara
@Ohio Mom: Coverage of dialysis under Medicare is an anomaly that goes back to political pressure from families and doctors at the time dialysis first became prevalent.
Ohio Mom
@Keith P.: Congrats on nine years — it’s a lot of work being on dialysis successfully.
We’ll be interested in your reports after these new policies are finalized and implemented on how they are affecting patients. Though I realize that is going to be a while.
Gin & Tonic
@David Anderson:
A sentence rarely posted in comments here.
narya
My mom managed her failing kidneys (completely idiopathic, as far as anyone could tell) for two years by managing her diet, but eventually had to go the route of dialysis, 2 (I think) days/week. Then, 9.5 years ago, she got a transplant, and it was a fking miracle, not least because she was in her 70s when she got it. The way it completely returned her quality of life is just awesome–and I wish the same for everyone in her situation.
Ohio Mom
@Barbara: Yes, that is what I’ve heard. There are lots of people representing other serious medical conditions that lobby however that haven’t had such good success.
I am happy for dialysis patients, I’d like every other type of patient with serious conditions to have the coverage. You’d think the insulin-dependent community has a good case but I’m not seeing much movement to help them.
Frankensteinbeck
@Baud:
Trump does not read. He sure as Hell does not read the kind of complicated documents that make up most executive orders. Someone slipped this into a pile of orders for deregulation and torturing brown people, and he signed it in total ignorance. Just another day in the Court of the Sun King.
Barbara
@Ohio Mom: Once it became obvious that dialysis was just the dawn of a new day of expensive medical technologies Congress declined to extend coverage on a piecemeal basis. It is worth remembering that the Nixon administration tried to pass a universal coverage scheme similar to Medicare and that Teddy Kennedy, to his ultimate and enduring regret, blocked it because he deemed it insufficiently comprehensive. So Congress realized, sensibly, that extending coverage piecemeal on the strength of competitive lobbying was wrong but was unable to do something more comprehensive, regardless of a person’s disease status. Also remember that while coverage of dialysis is surely a lifeline for many people, Medicare coverage for CKD stops once a person receives a transplant.
randy khan
What I am most curious about is why this is an Executive Order. It seems like something that should come out of HHS. I mean, it’s okay either way if it benefits people, but I don’t recall Obama or Clinton or the Bushes doing this sort of thing. (And maybe I’m wrong about that – I wasn’t reading blogs that covered health care policy back in the day.)
Van Buren
@Ohio Mom: Somebody he cares about needs a transplant.
Barbara
@randy khan: CMMI was enacted via the ACA. Obama used CMMI for a number of initiatives, the most notable being reimbursement associated with joint replacement surgery, which is the most common surgical procedure received by Medicare beneficiaries. It was controversial and various initiatives have been challenged when they were not “voluntary.” I don’t know why there needs to be an executive order for this one, but these executive orders are incredibly vulnerable to challenge on the basis of no statutory authority. I will be looking at it as soon as I get my hands on it.
Barbara
@Van Buren: You lose Medicare coverage on the basis of ESRD within two years of receiving a transplant.
Mike in NC
Fat Bastard just loves to issue Executive Orders while enjoying hours and hours of Executive Time. Doesn’t matter if they’re legal or even make sense. Next Executive Order will require beachgoers to wear sunscreen and keep their dogs on a leash. The God-Emperor has issued his edict!
jl
@rikyrah: I don’t have time right now, but I do know there are some reports on the issue. I’ll go find them later today or tomorrow and will link to them here. I think the consensus of health economists and clinicians who have looked into it is that it is a mix of greed and collusion and using price discrimination to suck as much economic value out of society in return for the insulin. The average price of insulin to large corporate providers has not been nearly as large as the increase in the list prices quoted in the news stories. So, if you have good insurance, a good, large, provider with buying power and the right connections and which decides that it wants or needs to serve the needs of its diabetic population, then the insulin can be obtained at a reasonable cost. If not, the the insulin cannot be obtained at a reasonable price and you have no recourse except. The US patent system, which is internationally and historically extremely generous to corporate profits, plays a role. Bundling of pen and other delivery systems and the active drug under patent is allowed in the US that promotes ability to charge extremely high prices and keep newer insulin type products (the active drug itself) under eternal patent protection is allowed in the US in way that it is not in other comparable countries.
So, it is a horrible story of a horribly dysfunctional health care system. The problem is an infernal mix of several issues.
I’ll alert you when I find the links.
randy khan
Can we haz ticker tape parade post?
(I figure it’s not OT because you never know when “ask the referee” will pop up on a David Anderson post.)
jl
@Van Buren: It is also possible that Azar, HHS secretary, is one of the two or three half-way decent officials who were slipped by Trump, or who have gone rogue and decided to half-way do their jobs. But that is just a guess. We’ll see if there are dirty tricks in some of the good plans Azar has put forward. But he hasn’t had much success. His plan to force drug companies to reveal drug prices in their advertising was just shot down in a federal court.
kindness
Except I don’t trust anyone from the Trump administration to enact a policy where they don’t play favorites because that is the entirety of what they do. Right now here in California at least there is a known path for obtaining a transplant and moving up the list. From what I had read about earlier, this directive will toss that list overboard. I see lots and lots of lawsuits with this change. Sorry.
@Ohio Mom: Even with a contract the company I work for pays about $50K a month for each dialysis patient. It isn’t cheap. It’s a big National company too.
Betty Cracker
Are we sure it’s not really for boob jobs?
rikyrah
@kindness:
Me too. Always look at the angle. Always look for the scam.
rikyrah
@randy khan:
That would be a nice post….they could include nice pictures…pretty please?
Gravenstone
@Another Scott:
I suspect there is a substantial initial capital requirement needed to enter this particular market. While it might quickly become profitable, that barrier to entry may be what the incentives would focus on.
jl
@jl: Can’t edit my comment, so here is again, cleaned up a little
I don’t have time right now, but I do know there are some reports on the issue. I’ll go find them later today or tomorrow and will link to them here. I think the consensus of health economists and clinicians who have looked into it is that it is a mix of greed and collusion and using price discrimination to suck as much economic value out of society as possible in return for providing the insulin. The increases in average price of insulin to large corporate providers has not been nearly as large as the increase in the list prices quoted in the news stories. So, if you have good insurance, a good, large, provider with buying power and the right connections and which decides that it wants to, or must, serve the needs of its diabetic population, then the insulin can be obtained at a reasonable cost. If not, the the insulin cannot be obtained at a reasonable price and you have no recourse except trying to stretch a very inadequate supply that is not up to current standards of care. The US patent system, which is internationally and historically extremely generous to corporate profits, plays a role. Bundling of pen and other delivery systems and the active drug under patent is allowed in the US that promotes ability to charge extremely high prices and keep newer insulin type products (the active drugs ithemselves) under eternal patent protection is allowed in the US in way that it is not in other comparable countries. This causes problems not only for insulin, but in the much lower availability of newer injection devices in the US for other drugs than in other countries.
So, it is a horrible story of a horribly dysfunctional health care system. The problem is an infernal mix of several issues.
I’ll alert you when I find the links.
Barbara
@kindness: Changing the priority for transplants is always a fraught issue. UNOS has a change in progress that is currently being litigated in Georgia. The question revolves around how to balance giving enough priority to local communities to keep them invested, without ultimately wasting organs that could be used by higher volume centers. In that case, they enlarged the regions that would be considered eligible for initial allocation, which means that a greater pool of patients would be considered and organs more likely to find a recipient (instead of potentially no longer being usable after having to wait to make appeals to the secondary allocation region). It has the effect of pushing down the priority of those individuals who were previously in the primary allocation list but overall it increases the number of people who will receive transplants. My view is that if the current system results in a lot of unused organs, you should try something new. There is simply no “fairest” way to do this. There is only a way that gets the most people organs.
raven
How Trump Is Reforming Medicare, Part I
jl
Trump’s July Fourth event and weekend protests bankrupted D.C. security fund, mayor says
” Bowser requested that the White House commit to fully reimbursing the fund.
“We ask for your help with ensuring the residents of the District of Columbia are not asked to cover millions of dollars of federal expenses and are able to maintain our high standards of protection for federal events,” she wrote.
The White House did not immediately respond to a request for comment. ”
https://www.washingtonpost.com/local/dc-politics/trumps-july-fourth-event-and-weekend-protests-bankrupted-dc-security-fund-mayor-says/2019/07/10/fb0d1de4-a316-11e9-b732-41a79c2551bf_story.html?utm_term=.aaa6b5a2333e
jl
@raven: I think the chances that Trump has any clue about these proposals is close to zero. It’s Azar. What the heck Azar thinks he is doing, making attempts at what appears to be good policy is an open question. I agree with commenters that nothing coming out of the Trump administration can be trusted, and it all needs to be watched closely no matter how good it seems.
On the assumption that there are not dirty tricks buried in these proposals, the news is still bad since courts seem to think some of them need to go through Congress, but very doubtful that can happen given the level of corruption that rules our political system.
Barbara
@raven: In fairness, Congress did begin implementing site neutrality for outpatient visits in 2015. It grandfathered sites already in existence. The White House proposed budget gets most of its health related savings from removing a lot of these exemptions, as well as imposing site neutrality for additional kinds of services. I don’t think the executive branch can wave a magic wand and remove the power of the statutory compromise.
Raven
Even a blind squirrel. . .
Brachiator
I really wonder who Trump turned to for background on this decision. I don’t associate this administration with competence or listening to experts.
Also, that this executive order depends on the continued existence of the ACA is goddam ridiculously par for the course.
chopper
@jl:
lol, he’ll never pay.
Ruckus
@Gravenstone:
It might not be the actual entry costs, but the risk that immediate ROI might not be “sufficiently high to make anyone interested. IOW it might be thought that they won’t make enough money fast enough.
Ruckus
@Raven:
But a blind, dumb, deaf, racist, squirrel?
Yutsano
OT: Hawai’i has decriminalized the bud.
Starfish
Our very own Hillary Rettig is a kidney donor.
Also, I have a friend who has some kidney disorder that he was genetically pre-disposed to and desperately needs a transplant. He is in Texas.
Brachiator
@Starfish:
Stevie Wonder has been in the news recently, after announcing that he would be getting a kidney transplant in September. As a result, news about the procedure is being covered big time.
https://www.freep.com/story/news/local/michigan/2019/07/09/stevie-wonder-kidney-transplant-living-donor-recovery/1672743001/
Feathers
I used to work at an organ bank. Amazing people doing amazing stuff. However, I was astonished at the number of complete wingnuts working there. They kept it under wraps, but they would be talking about systemic problems in medical diagnosis and community healthcare issues in reasonably insightful way, and then saying how they liked what Trump was saying in the debates.
Barbara
@Feathers: I met with someone who told me what a scandal it was that his state was at the bottom of all kinds of metrics for health status and that he was trying to start broader based community health outreach through a safety net clinic, and then told me that he was a big Trump supporter. The cognitive dissonance can be bewilderingly strong.
Barbara
So I read the order. It’s a list of things that are going to happen within the next however many days. No details.
Keith P.
@Yutsano: I would have figured they’d go full legal given that the other big weed states did.
J R in WV
@Barbara:
No details !! What a shock !!! It’s a wish list with no path to achieve the wished for results… so not amazed.
Thanks for taking the time to look up the EO and read it and then reporting back. Amazing!
Barbara
@J R in WV: I was probably a little harsh. CMMI does have some reimbursement models that it plans to roll out, but those have been in the works for a while and don’t need an EO to be implemented. They are supposed to start next January.
Quaker in a Basement
Trump: (For reals!) “The kidney has a very special place in the heart.”
Blaming the teleprompter on my mark….
Dr Ronnie James DO
When I was getting my masters in health policy, we were taught that the dialysis benefit in Medicare was put there to secure the hotel of a single Senator whose wife (?) needed dialysis, which was staggeringly expensive in those days.
During my training with a nephrologist I worked with for a month, I gleaned the following:
1) there’s a huge wave of kidney disease, which will get worse as a longterm consequence of the high rates of chronic disease (diabetes, hypertension, heart failure, which are all risk factors for kidney disease) continue to grow.
2) Doing your own dialysis at home (usually peritoneal dialysis), which the Trump proposal is emphasizing, requires patients to be relatively competent / conscientious. Patients whom the nephrologists aren’t confident can handle it typically get put on center-based hemodialysis.
3) The economics for nephrologists are rough (large volumes of medically complex patients); nephrology fellowship slots often go unfilled, and nephro training programs often shut down due to lack of interest (no fellows means no funding).
4) about the only way for nephrologists to make “good money” (huge grain of salt, these are doctors talking) is to run a dialysis center. If dialysis centers close, I wonder if more of it will get even harder to recruit people to go into nephrology.
Another Scott
@Dr Ronnie James DO: Thanks for the info. It’s good to be reminded of all the moving parts in situations like these.
Cheers,
Scott.
gene108
@Keith P.:
Check and see, if any area hospitals are using Hep-C positive kidneys for non-hep-c positive recipients. The Hep-C will be treated after transplant. The issue is probably going to be, who will pay for the Hep-C treatment. Merck is sponsoring trials in a few locations and will cover the cost of treatment, using their drug Zepatir.
Hope the EO can help with getting a kidney.
@Barbara:
Medicare covers post-transplant for 30 or 36 months after transplantation (forget which is the correct duration).
gene108
@Dr Ronnie James DO:
In home dialysis, whether hemodialysis or peritoneal dialysis, requires a high degree of commitment from the person involved. I know in home hemodialysis, you are required to have someone else there during treatment, who will be trained on the equipment along with you. In home dialysis is much cheaper than in center dialysis, but it is not inherently cheaper or more comfortable for the patient.
Instead of coming home and relaxing, you come home to your own personal dialysis center.
One of the biggest problems for some set of dialysis patients to get on the transplant list is obesity. You need a BMI under 35 to get on the list, and some folks are well over that level.