CKD Dialysis Patients' Efforts Working: White House Is Quietly Helping People Get Kidneys



It was announced that First Lady, Melania Trump, had a Kidney Surgery due to a kidney complication. Since then, as a non-political organization has encouraged patients to sign the petition (click here) to have the administration take direct action to improve Kidney-Related Issues, Dialysis, Kidney Transplant, and Breakthroughs. News and data appear to show that these efforts are beginning to pay off in a BIG way.

Recommended Reading: White House Taking Big Actions To Decrease Kidney Transplant Waiting Time For CKD Patients remains non-political and we were very happy to announce the great work that the Obama Administration has done to further the discussion and action with regard to Kidney Issues, Dialysis, and Healthcare Improvement. Now the good news comes from the fact that the new administration appears to be "quietly helping people get kidneys," with two new rule changes according to Vox Media.

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The Office of Information and Regulatory Affairs (OIRA), housed in the White House budget office, is often described as the most important federal agency you’ve never heard of. "Its job is to evaluate, alter, delay, reject, and otherwise administer regulations making their way through the government," according to Dylan Matthews (writer and Kidney Donor).

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Well, the department is now looking into two rule changes that would increase the availability of kidneys and other organs for people who need transplants. These obscure rules have the potential to save thousands of lives, noted Mr. Matthews. The Rules are as follows:

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1.) It authorizes the National Living Donor Assistance Center (NLDAC), a group funded by the federal government that reimburses travel expenses for living kidney donors, to also reimburse for lost wages, child care, and other expenses. That could dramatically increase living donations. Since Israel passed a law in 2018 reimbursing donor expenses and providing other benefits, live donation rates have quadrupled. Josh Morrison, an altruistic kidney donor who runs the advocacy group Waitlist Zero, conservatively estimates that the regulatory change might boost donations in the US by 25%. That would mean 1,600 or so additional donors every year, each of whom would enable their recipient to live, on average, nine to 10 years longer.

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2.) The other rule is also crucially important, but a much more complex. However, we at KidneyBuzz will do our best to simplify. Still, to understand the new rule, you need to know a bit about how hospitals recover kidneys from dead bodies. In the US, there are 58 agencies with local monopolies over the provision of Deceased (Dead) Donor organs, known as Organ Procurement Organizations (OPOs). And for some time now, independent analysts and investigative reporters have argued that OPOs are underusing Deceased Donor kidneys by the tens of thousands. One report estimated that 28,000 usable organs are abandoned; another put the number at 75,000.

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The basic argument is that OPOs face perverse incentives: For instance, they’re often evaluated on the basis of how many organs are recovered per “eligible death,” but “eligible death” is a determination made by the OPOs themselves, making it easy to juke the stats without actually getting more people organs. The result is that tens of thousands of organs go unused.

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According to a source in the federal government, the OPO rule being weighed would scrap the existing evaluation system in favor of two simple, harder-to-game criteria: the number of deceased donors as a share of the total number of deceased people 75 and younger with causes of death compatible with donation (an objective standard determined ahead of time); and the number of organs recovered as a share of that group of deceased people. That could go a long way toward ensuring OPOs are collecting as many organs as possible — and save thousands of lives in the process.

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Regulatory changes like these are not usually front-page news. But when you are dealing with a problem as severe as the kidney shortage, there’s tremendous potential for even seemingly modest regulatory changes to save lives. With YOUR continued support, we can see major gains in the area as well as Kidney Related Breakthroughs, Improved Dialysis Treatments, and much more.

Have these rule changes gone far enough or is far wider sweeping action necessary? Share your experience and insights with the nearly 100,000 Friends who have liked on Facebook (click here). Also, follow the over 300,000+ monthly individual viewers who visit regularly for the latest daily news and information which teach those with Chronic Kidney Disease, Dialysis, Kidney Transplant, Diabetes, and Hypertension how to better manage and improve their lives. Catherine MacKenzie (Dialysis Patient) said, "What a great site. I thought I knew quite a bit about CKD after suffering for 26 years but I've learned a lot since finding KidneyBuzz. I'm awaiting my 2nd transplant but will be checking into your site regularly."

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