Nieltje Gedney

Nieltje Gedney is current Treasurer and past Vice President of Home Dialyzors United (@hdunews). Active on the Policy and Advocacy Committee, she has spoken at numerous events including the Alliance for Home Dialysis, American Kidney Fund, National Kidney Foundation, SONG, Annual Dialysis Conference, The Kidney Project and Kidney Health Initiative (KHI). She is a contributor at Kidney Views Blog, CJASN, and Seminars in Nephrology as well. Nieltje’s patient advocacy stems from experience on Capitol Hill beginning at 16, where she learned that power in numbers can bring about change.

The time for innovative treatments for chronic kidney disease (CKD) and end stage kidney disease (ESKD) is long overdue. The current system of kidney replacement therapy (KRT) in the US is best described as a medical-industrial complex, made up of an intertwining web of entities and influences from the corporate, financial, government, medical, political, and academic worlds. It is also woefully outdated, with technology having changed very little in the last 50 years. Unfortunately, this system no longer serves patients’ best interests and inhibits motivation to change the status quo.

I have a dream. As we finally see new technology emerging in KRT, I envision a patient in need of KRT walking into a full-service clinic, examining an array of options, devices, and treatments, and opting for a treatment that fits their personal lifestyle. Albeit a wearable PD device, an implantable kidney, iHemo needle free dialysis, or one of the newer on demand dialyzers, the most important aspect of one’s treatment should be about choice!! While the WAK and AWAK are probably more ready for prime time than implanting a bioartificial kidney or using scaffolded organs, they are slated to make a bigger impact once they reach market.  By utilizing a nano filter and/or cultured kidney tubule cells to actually mimic a human nephron, these devices will take time to get to the finish line before declaring their intentions to go pro.

Instead of randomly treated with one size fits all thrice weekly dialysis, imagine a patient initially starting their dialysis journey with a moderate and gentle introduction to some form of KRT, one that they have chosen to best fit their lifestyle. Then, working closely with their clinicians, patients monitor and adjust dosing (time and frequency) until they reach an optimal treatment regimen. One where they feel their best, live and work, raise a family; a life that is not burdened by an archaic treatment that keeps them immobilized and tethered to a machine.

Now imagine combining effective devices and modalities, so a patient receives the best treatment available, in the comfort of their home. They may opt for a nocturnal treatment that is so gentle they sleep right through it, or resort to a more portable treatment, borrowed from their clinic, for times when they wish to travel. Over one’s lifetime, a combination of devices may be used. It won’t be about how one receives KRT but about achieving as normal a life as possible, from a medley of devices!

New machines like Tablo, Quanta, Diality and CVS’ HemoCare are a step in the right direction. They economize on water and consumables and provide a good treatment, but limit mobility. Additionally, these machines can offer the potential for self-care treatment outside the clinical setting, as well as frequent and prolonged sessions in the home. There will always be a need for staff assisted dialysis in clinics and hospitals. But the patient is still tethered to a machine. That’s why transplant, with all that it entails, is still the holy grail of today’s treatment choices. But today’s transplant, despite the appearance of freedom and mobility, has its own list of side-effects and complications, including toxic anti-rejection meds.

It’s critical to understand what patients needing KRT desire. They want to maintain normalcy and independence. Portability, manageable equipment size and weight that allow for mobility, and the ability to fit under clothing, while delivering sufficient clearance of uremic toxins, are all requirements that patients seek when faced with KRT.

A paradigm shift in the basic philosophy of care will improve multiple quality-of-life outcomes for patients, drive the development of smaller and easier-to-use technology, promote home and self-care dialysis, greatly increase patient participation in the system, and change the financial incentives. Is my dream realistic? Yes, no, and maybe.

A recent Executive Order signed by the President of the US offers a renewed vision of critical policy priorities to address the full spectrum of the CKD cycle, including:

1. prevention and awareness.
2. keeping people with a CKD diagnosis healthy.
3. preventing or slowing the progression of the disease.
4. addressing comorbidities, such as diabetes, hypertension, and cardiovascular disease.
5. preparing for ESKD, including access to transplant.
6. and home therapy or active medical management.

Many of the newer innovations in KRT will have a lower price than the current business model for dialysis, both initially and amortized over time. Some will have higher up-front costs, but lower consumables overall. All of them will be more environmentally friendly than the current models that use hundreds of gallons of water and pounds of plastic per treatment.

But most important, instead of the debilitating business model currently used for dialysis treatments, the new technologies will offer freedom! A recent global survey on the views of nephrology nurses revealed a significant variation in home dialysis practices worldwide. This includes the freedom to work, travel, raise families, and be a productive part of society, instead of a drain on the health care system. This may not be quantifiable in dollars, but in human capacity it is priceless.

For all these reasons and more, I have a dream that the Implantable Bioartificial Kidney wins this year’s NephMadness and leads to a revolution in options for kidney replacement therapy.

– Guest Post written by Nieltje Gedney

As with all content on the AJKD Blog, the opinions expressed are those of the author of each post, and are not necessarily shared or endorsed by the AJKD Blog, AJKD, the National Kidney Foundation, Elsevier, or any other entity unless explicitly stated.

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