Home Dialyzors United Applauds Executive Order
Posted on July 16, 2019
For Immediate Release July 15, 2019
Contact: Nichole Jefferson, President Home Dialyzors United
Home Dialyzors United Applauds Executive Order
Home Dialyzors United (HDU) was front and center when President Donald Trump signed an Executive Order to launch “Advancing American Kidney Health” in Washington DC on July 10, 2019, launching a bold new initiative to improve the lives of Americans suffering from kidney disease, expand options for American patients, and reduce healthcare costs.
This initiative provides specific recommendations to deliver on three goals that HDU fully supports: fewer patients developing kidney failure, fewer Americans receiving dialysis in dialysis centers, and more kidneys available for transplant.
We realize it will take time to fully assess the impact of the changes announced today, but HDU is excited that after years of talking to Congress and officials at HHS, CMS and FDA, as well as other kidney advocacy groups, ALL dialysis modality choices, including home, are finally being supported.
HDU is a 501(c)(3) non-profit organization and the only dialysis patient group dedicated solely to home dialysis. Our mission is to inspire, inform, and advocate for an extraordinary quality of life for the home dialyzor community. We know from personal experience that, with the right dialysis treatment, many patients with ESRD (and their families and care partners) can lead a normal life, enjoying family and friends, and pursuing employment, education, volunteer, and leisure activities.
Based on our experience, as a patient organization specifically representing the home dialysis community, HDU supports education, home dialysis, technology improvements, kidney transplantation, and pay for performance, all of which will ultimately improve long term outcomes for patients. They not only help kidney patients feel better and enjoy life, they can also save on health care expenses, while not compromising quality of care.
Home dialysis. Typically, people on home dialysis feel better and live longer than people treated in dialysis centers. Overall cost to the health care system can be less if patients are trained to do home dialysis and remain in the home setting. Additionally, home dialysis has been shown to contribute to other cost savings including decreased use of medications and fewer hospitalizations. HDU supports initiatives that increases the use of home dialysis for all patients who desire to do so.
Upstream care for chronic kidney disease. Kidney disease can and often does progress over time to end stage renal disease (ESRD). People are often unaware of their risk factors for CKD and because CKD presents few or no symptoms until late stages, they then crash into dialysis. Early detection and intervention is vital. In collaboration with ESRD Networks, HDU has been developing a vetted curriculum for reaching CKD and ESRD patients to help them learn about their risk factors for kidney disease and their treatment choices.
Innovation in dialysis technology. As the first patient organization to partner with The Kidney Project HDU is pleased to see the Administration support the innovation and development of portable, wearable and implantable kidney devices and other treatment options that patient centric. We also look forward to the expansion of the KidneyX competition to support promising innovations.
Kidney transplantation. HDU supports this option for the appropriate patient, while recognizing that not all patients are eligible or want a transplant. We welcome system improvements to make more transplants available.
As the patient voice for Home Dialysis, HDU is pleased to see that patient comments on social media were favorable:
“This is really a positive development.”
“Payment and billing is a start. What we need are more nonprofit and profit companies who imagine, design, and create specifically for home dialysis clients, with a significant amount of input directly from home patients, without encumbrance of payor requirements in the design.”
“It will all be in the details which will emerge in the regulations developed.”
“The focus on technology innovation and home dialysis is a huge development.”
“Politics aside, this initiative includes the artificial kidney & financial help for people who want to step up & be living donors.”
“It appears quite hopeful to me. After being ignored by congress, CMS, the ESRD networks and prior presidents, if done with the right focus, this is huge. Just the addition of increased transplants from reduced wastage is monumental”
Nichole Jefferson, HDU President, said after leaving the event on Wednesday “A new day has dawned for kidney patients and HDU was proud to have a seat at the table. We also recognize that our work has just begun”.
HDU applauds the current Administration and welcomes any improvements that will result in optimal health, quality of life and independence for people with kidney disease across the country. We stand ready to work with you to meet these goals.