Press Releases

For Immediate Release September 12, 2019

Contact: Nichole Jefferson, President Home Dialyzors United
Phone: 304.279.3192
Email: njefferson@homedialyzorsunited.org

In Memory of Ellen Griffith Cohen

It is with the most profound sadness that Home Dialyzors United (HDU) announces the death of a dedicated member of its Advisory Board, Ellen Griffith Cohen.

Ellen retired in August 2012, after 11 years as a press officer in the national office of the Centers for Medicare & Medicaid Services. She promptly launched a second career as an advocate working with HDU’s Policy Committee. Her experience with CMS was invaluable; helping to write and edit comments to CMS and GAO, connect with appropriate staff at CMS, and coordinate meetings.

She has been a persistent voice for home dialyzors, for home modalities and for bettering the quality of life for all patients.  She was outspoken in her belief that every single patient deserves to live a normal life on their own terms, and her spirit embodied that in all that she accomplished. She was two years post-transplant, having received a living donor pre-emptive transplant.

Ellen’s passion for patients was evident in the online support and encouragement she provided to the HDU community. HDU extends its deepest sympathy to Ellen’s family. While her colleagues and friends at HDU will miss her captivating smile, tenacity and grace, her spirit will live on in all of us, motivating us to do more for the dialysis community. Her legacy will live on in the lives of those patients and families who are thriving through home treatment and who are inspired to “pay it forward” by advocating for improved quality of life, just as Ellen did!

EllenGriffithCohen2.jpg

To learn more about how HDU will support patients, and how patients can support HDU visit http://www.homedialyzorsunited.org.


For Immediate Release September 12, 2019

Contact: Nichole Jefferson, President Home Dialyzors United
Phone: 304.279.3192
Email: njefferson@homedialyzorsunited.org

Home Dialyzors United and The Kidney Project Partner on Capitol Hill to Change the Face of Dialysis and Improve the Quality of Patient’s Lives

Dallas, TX. Home Dialyzors United (HDU) Board President Nichole Jefferson is excited to announce, as part of its mission, that HDU and its strategic partner, The Kidney Project, joined forces on Capitol Hill to promote Kidney X, and ask for increased funding for development of innovative technologies, such as iHemo for the prolonged and frequent hemodialysis at home and implantable artificial kidney. A public-private partnership between the US Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) designed to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases, KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including prevention, diagnostics, and treatment.

HDU announced its partnership with The Kidney Project (TKP) on May 12, 2017. The TKP research and development effort is led by Shuvo Roy, PhD, and William H. Fissell, MD, from University of California San Francisco (UCSF) and Vanderbilt University Medical Center (VUMC), respectively. Dr. Roy serves as the Technical Director of The Kidney Project and is a faculty member in the Department of Bioengineering and Therapeutic Sciences, Schools of Pharmacy and Medicine at UCSF. Dr. Fissell serves as the Medical Director and is an Associate Professor of Medicine in Nephrology and Hypertension at VUMC. Their combined expertise embodies all that HDU believes is possible for the future treatment of end stage renal disease (ESRD).

Sept12-19PR-3.jpg

The TKP team is developing a surgically implanted, free-standing bioartificial kidney to perform the vast majority of the filtration, balancing, and other biological functions of the natural kidney. The two-part device leverages recent developments in silicon nanotechnology, membrane filtration, and regenerative medicine. It is powered by the body’s own blood pressure without the need for external tubes and tethers or immunosuppressant drugs.

The bioartificial kidney will offer a new treatment option beyond the short-term solution of renal dialysis and the longer-term solution of a kidney transplant for which donor organs are severely limited. In addition, as a by-product of current research, TKP hopes to offer iHemo (implantable hemodialysis), an easy-to-use and patient-friendly system that would use the artificial kidney’s filtration unit to create a permanent interface between a patient’s circulatory system and a catheter that can be connected to an external pump, with the purpose of filtering out blood toxins. The system will spare patients from needles and time-consuming trips to dialysis centers.

TKP was one of 15 applicants to win a first-round prize of $75,000 at KidneyX in April of this year. However, it will require significant additional resources to get the bioartificial kidney through human trials, and so far funding has been elusive. In part, because there is no precedent for a project of the scope and complexity of an implantable artificial kidney.

HDU and TKP met with top officials at US Health and Human Services , in the House of Representatives, and at the White House to discuss the need for additional funding for innovative technologies in the renal field, where funding is either severely limited or none currently exists.

“We were encouraged by the response we received at HHS and pleased to be invited back to further discuss our options”, said Shuvo Roy. William Fissell added, “It was especially exciting to see technology development for kidney disease acknowledged as a crucial priority by policy makers”.

Sept12-19PR-1.jpg

Nichole Jefferson, President of Home Dialyzors United, is excited that HDU was asked to be a part of this transformational research. “TKP embodies all that HDU believes is possible for dialyzors – a simple renal replacement therapy that will allow patients to continue to work, travel, care for loved ones, and live an extraordinary quality of life”.

To learn more about how HDU will support patients, and how patients can support HDU visit http://www.homedialyzorsunited.org.

Learn more about The Kidney Project (https://pharm.ucsf.edu/kidney) and support the push for a universal donor kidney and transplant for every patient who needs one. Give Today! 

Sept12-19PR-2.jpg

Home Dialyzors United Applauds Executive Order

For Immediate Release July 15, 2019

Contact: Nichole Jefferson, President Home Dialyzors United
Phone: 469.531.3344
Email: ngedney@homedialyzorsunited.org

President Trump signing Executive OrderHome 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 with Texas Congressman Michael BurgessNichole 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.


“Patient Access to ESRD New Innovative Devices Act”

For Immediate Release May 18, 2019

Contact: Nichole Jefferson, President Home Dialyzors United
Email: njefferson@homedialzorsunited.org

Home Dialyzors Supports Baxter Legislation “Patient Access to ESRD New Innovative Devices Act”

Dallas, TX. Home Dialyzors United (HDU) HDU Board President Nichole Jefferson is excited to announce, as part of its mission to educate and inform dialyzors, support of legislation H.R.2710 – To amend title XVIII of the Social Security Act to improve access to innovative new medical devices furnished to individuals with end stage renal disease under part B of the Medicare program by establishing a new device add-on payment adjustment under such part.

The legislation has been a cooperative effort between Baxter and other renal organizations, such as NKF and HDU, to address the a lack of innovative new devices for ESRD Medicare beneficiaries, in part because of the lack of reimbursement incentives for novel devices.

H.R.2710 proposes to address this issue by asking the Secretary of Health and Human Services to establish a process to provide —

(1) an add-on payment adjustment for a new medical device reviewed by the Food and Drug Administration under section 513(f)(2) or section 515 of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 360c, 360e) on or after January 1, 2020, and furnished to a beneficiary for the diagnosis, treatment, or management of end stage renal disease.

To learn more about the legislation, how HDU supports patients, and how patients can support HDU visit http://www.homedialyzorsunited.org.


Educational Meeting

For Immediate Release April 18, 2019

Contact: Nichole Jefferson, President Home Dialyzors United
Email: njefferson@homedialzorsunited.org

**Home Dialyzors Launches First Educational Meeting of 2019 in Richmond VA With ESRD Network 5**

Dallas, TX. Home Dialyzors United (HDU) HDU Board President Nichole Jefferson is excited to announce, as part of its mission, a new initiative “Going Home, Staying Home"© aimed at educating patients on their treatment choices.

The event will be held from 9 – 5 on Saturday, April 27, 2019 at the Courtyard Marriott, 10077 Brook Rd, Glen Allen Va 23059

For the first meeting in Richmond, VA, HDU has partnered with the ESRD Network 5 to reach all dialysis and transplant facilities in the region.

Keynote speaker will be Dori Shatell, Executive Director of Medical Education Institute. In addition, Dr. Tushar Chopra of UVA will address PD as a modality, and Dr. Dhiren Kumar of VCU will talk about the latest in transplant technology.

Additionally, patient advocates will be on hand to personally talk with all attendees and answer any questions they may have about home modalities, transplants, and transitioning from one to another.

The event is free, but registration is required: Registration.

Additional meetings are planned for later in 2019.

In addition to providing proven educational content on dialysis modality choices to patients, HDU will provide pre/post attendee surveys, and follow-up surveys at 3 and 6 months, to determine the effectiveness of this educational format in engaging patients.

To learn more about how HDU will support patients, and how patients can support HDU visit http://www.homedialyzorsunited.org.


Home Dialyzors Welcomes Executive Director

For Immediate Release January 1, 2019

Contact: Nichole Jefferson, President Home Dialyzors United
Email: njefferson@homedialzorsunited.org

Dallas, TX. Home Dialyzors United (HDU) On January 1, 2019 HDU Board President Nichole Jefferson, and the entire Board, welcome Carla Hagood to the position of Executive Director for HDU.

Last year was one of growth and change for HDU, culminating in this long awaited reorganization. Early in 2018 HDU employed a consultant to help formulate a 5 year Strategic Plan, of which the key component was to retain an Executive Director and move from a virtual organization to one with permanent roots. The appointment of Carla Hagood to fulfill this post marks the beginning of this transition. One of her first projects will be to plan and launch a series of regional meetings for pre-dialysis and dialysis patients to learn about the benefits of various home dialysis treatments: “Everything You Wanted To Know About Dialysis But Were Afraid To Ask!”

Ms.Hagood is ideally qualified to develop this new position for HDU. First and most important in fulfilling the HDU mission, Ms. Hagood has been a home dialyzor for more than 8 years and on dialysis for more than 11 years. She is currently completing her Master’s Degree in Healthcare Administration.

Dialyzors like Carla Hagood embody the essence of what Home Dialyzors United has advocated for since it began over 10 years ago. As a dialyzor, she will work tirelessly to advocate for a better life for all kidney patients, and believes that kidney disease and dialyzors deserve to live the best life possible. HDU and Carla believe it is time to move past the status quo and that taking this important step will aid in that process.

Carla Hagood serves as a volunteer at her local Community Kitchen that feeds and ministers to the homeless and low income residents in her area. She has also volunteered in fund raising for the Pathways Center which houses the homeless and offers rehabilitation and job skills training in her community. She is a former entrepreneur and at one time was involved with various international businesses and introduced their products to American companies. She comes to HDU with a passion for quality of life and a strong sense of the dialyzor’s right to autonomy.

To learn more about how HDU will support patients, and how patients can support HDU visit http://www.homedialyzorsunited.org.


Home Dialyzors United Elects Nichole Jefferson President

For Immediate Release August 1, 2018 

Contact: Nichole Jefferson, President
Phone: 469.531.3344
Email: njefferson@homedialyzorsunited.org

Nichole Jefferson, a native of Dallas, Texas, currently resides in West Des Moines, Iowa. When diagnosed with end-stage renal disease in 2003, not only was she unaware of what it meant, she had no idea she was at high-risk for developing kidney disease.

Though Nichole experienced both forms of dialysis (HD and PD), she preferred the convenience peritoneal dialysis offered. On June 12, 2008, she received the gift of life, a kidney transplant. Due to the many obstacles she faced following her transplant, Nichole realized that a transplant was simply another form of treatment and not a cure. This realization sparked her quest for knowledge, which later initiated her enthusiasm for advocacy.

While in Dallas, Nichole was involved in the local chapter of the National Kidney Foundation (NKF) and continued volunteering with the organization following her move to West Des Moines in 2011. Nichole’s enthusiasm for advocacy increased even further when she realized not many understood the prevalence of kidney disease in the black community. This discovery encouraged Nichole to seek additional knowledge to share with her community and underserved populations. Soon thereafter she began speaking with legislators regarding the need for early detection and other issues relating to chronic kidney disease.

In 2015, Nichole was selected to join the NKF Kidney Advocacy Committee, representing the state of Iowa. Additionally, she was invited to join the Kidney Health Initiative’s Patient and Family Partnership Council in 2016 and then became a Field Ambassador for the American Association of Kidney Patients in 2017. These opportunities allowed Nichole to broaden her advocacy audience to include not only kidney patients but nephrologists, researchers, scientists and other key stakeholders in the renal community.

As her education of kidney-related matters expanded, Nichole discovered another critical gap – few people she encountered during her journey were aware of home dialysis as a treatment option. In a desire to help spread awareness, she joined the Home Dialyzors United (HDU) Board of Directors in 2017. Since joining, Nichole has been elected President of the Board and is eager to collaborate with others in spreading awareness of kidney disease and treatment options. Denise Eilers, outgoing President, says “Nichole advocates for patients who are unable or unwilling to speak for themselves and will be an outstanding president of HDU.”

In addition to serving as the newly elected President of Home Dialyzors United, Nichole volunteers for numerous projects and organizations, such as:

  • ASN’s Kidney Health Initiative: Patient and Family Partnership Council

  • American Association of Kidney Patients – Field Ambassador

  • NKF’s Kidney Advocacy Committee – Region 6 Leader

  • National Institute of Health – APOLLO Steering Committee Member

  • National Institute of Health – Kidney Precision Medicine Project


Home Dialyzors United Attends Meeting with Secretary Azar at HHS Headquarters.

For Immediate Release May 29, 2018

Contact: Denise Eilers, President Home Dialyzors United
Phone: 563-508-4883

The current state of innovation for treatment of kidney disease is appallingly outdated. Some 30 million Americans suffer from kidney disease, yet the solutions are nearly identical to what they were more than fifty years ago. People with chronic kidney disease deserve better from our healthcare system.

That is why the Department of Health and Human Services and the American Society of Nephrology partnered to create the Kidney Innovation Accelerator (KidneyX, to rapidly increase the development of drugs, devices and digital health tools spanning prevention, diagnostics and treatment of kidney diseases. KidneyX will engage various stakeholders, including nephrologists, physicians, and entrepreneurs. However, there is one stakeholder whose voice will always come first: the patient.

HDU was honored to be included in the KHI meeting, along with ten other patients suffering from chronic kidney disease and/or their care partners, to meet with HHS officials to tell their stories. Secretary Azar, along with staff from the FDA, CMS and NIH listened to learn how KidneyX can best support patients.

HHS chose to share the experience of Nichole Jefferson, an HDU Board Member, KHI PFPC Member, and AAKP Ambassador, who explained her journey with kidney disease:

“As a kidney transplant recipient, I am enthusiastic about Kidney X because it can save others from going through the turmoil I experienced. My kidney disease journey began in October 2003 with a visit to the emergency room. After hours of testing, I was presented with the shocking diagnosis of end-stage renal disease.

“During the emergency room visit I learned I would have to start dialysis immediately. I was somewhat familiar with dialysis because of an uncle who had experienced kidney failure in the early 1980’s. I was under the impression that in the 20-plus years that my uncle had experienced dialysis, things had changed, and it wouldn’t be as difficult as it was for him. Imagine my surprise when I realized there hadn’t been much change in the treatments and I would essentially have the same options and suffer the same horrible side effects of dialysis.

“Everyone was ‘sentenced’ to four hours of treatment, three days a week, on the same day at the same time, week after week after week. When evaluating this tight regimen along with my work schedule and LIFE, I chose peritoneal dialysis. Although I was able to be treated while I slept, it was not without complications. There were several bouts of peritonitis, some of which required extensive hospital stays.

“On June 12, 2008, I received the gift of life–a kidney transplant. The transplant allowed me to watch my daughter grow into a lovely young woman. While watching her grow, I wondered if she, too, would have this disease. Kidney X gives me hope that my daughter, along with future generations, will be able to avoid the agony I experienced with kidney disease. It is my aspiration that Kidney X brings alternatives and ultimately a cure for chronic kidney disease.”

Patients like Nichole work tirelessly as advocates to promote a better life for all kidney patients, and believe that kidney disease deserves the same level of innovation that we’ve seen in treating heart disease and cancer. HDU believes it is time to move past the status quo and that KidneyX is one of the solutions.

To learn more about how KidneyX will support patients, and how patients will support KidneyX, visit http://www.kidneyx.org/