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Author Topic: Opinon Piece on Trump's Kidney Disease Initiative  (Read 91 times)
Shaks24
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« on: September 13, 2019, 08:18:30 AM »

Some hope for some promising developments if Congress can follow through.

https://thehill.com/blogs/congress-blog/healthcare/461266-the-advancing-american-kidney-health-initiative-lives-up-to
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
MooseMom
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« Reply #1 on: September 13, 2019, 09:29:53 AM »

Yes, we've discussed this at some length.

Sec. Azar's father has been a dialysis patient, thus the impetus for this initiative.

I find it rather disappointing that the priority seems to be how these improvements will be paid for, stressing financial "incentives" that would lead to better patient care as if there is no "moral incentive" in the first place.  I guess there isn't, really.  The discussion still seems to be all about money.

We as a community do have questions.  Exactly how will this initiative result in more available organs for transplantation?

Are we talking more patients doing home hemo or home PD?

Who are seen as the "disruptors in the field"?

When we speak of "Congress", we're really speaking of Mitch McConnell.  It is hard to see any sort of funding request, especially if it originates in the House, being put to the floor in a McConnell controlled Senate, especially when he has already promised that he'd put nothing on the floor for debate until the general election next year.

I wish we could see more of President Trump himself talking about what he is having Sec. Azar actually do.  I've not heard from him directly.  If anyone has a link to a story where he has acknowledged the problem and has signaled his personal support, I'd like to see it.

I have not had the time to read this yet, and it may have already been posted here on IHD, but here's a link to the CMS proposals:

https://www.cms.gov/newsroom/fact-sheets/proposed-end-stage-renal-disease-treatment-choices-etc-mandatory-model
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Alexysis
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« Reply #2 on: September 13, 2019, 05:00:50 PM »

The one thing I find positive in this article is that they are considering extending Medicare to cover the extra drug costs for transplants. One thing that has kept me from re-activating my status on the transplant list is the drug costs involved. Because it seems that you lose Medicare 1 year after getting a transplant, it puts me in a situation where I really can't justify taking the chance until I'm 64, and therefore will not risk losing coverage should my convalescence take so long that I lose my employment.
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iolaire
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« Reply #3 on: September 13, 2019, 07:35:08 PM »

Medicare lasts three years post transplant so you might be able to jump the gun by a year.

PS MooseMom thatís a good link but a bit dense to comprehend the full details. Plus the devil is in the unsaid details. 
« Last Edit: September 13, 2019, 07:39:23 PM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #4 on: September 13, 2019, 07:48:43 PM »

Iolaire, you're absolutely right.  We can't seem to get all of the details, which is where the devil resides, no matter what we are told.  That's why I'm skeptical.  I'll believe it when I see it.

And Alexysis, Congress has been working since 2013 to extend Medicare to cover tx meds.  I am not sure how much progress has been made in that regard.  Apparently, not enough!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
GA_DAWG
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« Reply #5 on: September 14, 2019, 09:29:06 AM »

Given the number of untruths told by this crowd, I am reluctant to give them the benefit of the doubt. That being said, I do hope for anything that could make the process more transparent and easier for those suffering from kidny disease, or really any debilitating disease. For decades, I identified as a Republican and a conservative, and in those days that meant doing what was fiscally responsible. There is little responsibility that I can find in  performing a transplant and then denying access to the drugs required to make it successful. I see and talk to many who find themselves in the boat of not seeking a transplant because they worry about being able to afford the drugs necessary after the transplant. Then  again, I find the entire healthcare, or rather insurance, racket nearly impossible to understand these days. I shake my head every time I receive an EOB from the insurance company where the hospital charged tens of thousands of dollars for a procedure, but accepted payment of less than a thousand from an insurance company.
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MooseMom
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« Reply #6 on: September 14, 2019, 09:50:49 AM »

I'm with you, GA_DAWG!  Not only is it fiscally irresponsible to deny access to the necessary drugs, it is also immorally wasteful.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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