Join our network of advocates to make a difference for kidney patients. You can influence public policy relating to kidney health, organ donation, and transplantation though simple activities like emailing, calling or tweeting your legislators. These campaigns require the participation of dedicated volunteers who want share their story in order to make change happen in government and across the nation. We’ll show you how – just sign up to be an advocate and we will send you the materials to allow you quick, easy ways to have an impact! Sign up today!
“The Administration’s commitment to charting a new course for kidney health will help revolutionize transplantation and dialysis and advance new innovations, therapies and treatments which patients everywhere have been waiting on for far too long,” said Kevin Longino, CEO of National Kidney Foundation and a kidney transplant patient. “Kidney care is, for the first time in decades, experiencing a renaissance that can transform the lives of millions of Americans while also saving taxpayers billions of dollars. NKF is grateful to the Administration and our bi-partisan Congressional champions who are elevating kidney disease as a national priority.”
In January, 2019, NKF released a comprehensive path forward for increasing kidney transplantation which included many of the key aspects the President announced in his speech today. In the plan, NKF outlined necessary steps to expand financial assistance offered to living organ donors to cover all expenses related to organ donation, align Medicare and Medicaid Reimbursement to healthcare providers to ensure earlier treatment and care for CKD patients, implement a demonstration program at the Centers for Medicare and Medicaid Innovation that would take a patient-centered approach to testing changes in payment and care delivery, permanently extend Medicare coverage of immunosuppressive drugs for kidney transplant recipients, reduce the discard of kidneys that could be used to provide better outcomes and quality of life for patients, and make key improvements to organ procurement organization (OPO) procedures.
“The time is now for the entire kidney community to embrace the momentum of today’s announcement, work with the Administration and Congress to advance policies which can significantly benefit kidney patients and their families, and together change the current trajectory of kidney care,” said Holly Kramer, MD, MPH, President of National Kidney Foundation.
In the United States, 37 million adults are estimated to have chronic kidney disease (CKD) – and most aren’t aware of it. 1 in 3 American adults is at risk for CKD. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity, a family history of kidney failure, and being age 60 or older. People of African American, Hispanic, Native-American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are about 3 times more likely than Whites to develop end-stage kidney disease (ESKD or kidney failure). Compared to non-Hispanics, Hispanics are almost 1.3 times more likely to receive a diagnosis of kidney failure.
More than 726,000 Americans have irreversible kidney failure, or end-stage renal disease (ESRD), and need dialysis or a kidney transplant to survive. More than 500,000 of these patients receive dialysis at least three times per week to replace kidney function. Nearly 100,000 Americans are on the waitlist for a kidney transplant right now. Depending on where a patient lives, the average wait time for a kidney transplant can be upwards of three to seven years. Living organ donation not only saves lives, it saves money. Each year, Medicare spends approximately $89,000 per dialysis patient and less than half, $35,000, for a transplant patient.
About National Kidney Foundation Living Organ Donation Resources:
THE BIG ASK: THE BIG GIVE platform, which provides nationwide outreach, is designed to increase kidney transplantation through training and tools that help patients and families find a living donor. It includes direct patient and caregiver support through our toll-free help line 855-NKF-CARES, peer mentoring from a fellow kidney patient or a living donor, online communities, an advocacy campaign to remove barriers to donation, and a multi-media public awareness campaign. All resources are free and designed to teach kidney patients, or their advocates, how to make a “big ask” to their friends, loved ones, or community to consider making a “big give,” a living organ donation.The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease. For more information about NKF visit www.kidney.org.
Updated Kidney Disease: The Basics Fact Sheet Now Online, Americans with
CKD Now at 37 Million
The number of American adults who have chronic kidney disease is now estimated to be 37 million – that’s one out of every seven or 15 percent of the adult population – according to the latest dataanalyzed by the Centers for Disease Control and Prevention. The higher estimate in the number of Americans affected by chronic kidney disease, versus statistics reported in previous years, is due to several factors, including differences in study time frames, methodologies and populations, as well as an aging population and increased prevalence of risk factors such as diabetes and hypertension.
“Our specialized CKD program and partnership with the National Kidney Foundation aim to address an immediate need here in the Baltimore area,” said Norman Rokeach, Marquis’ chief executive officer. “We are committed to creating a center of skilled nursing and healthcare excellence here at Orchard Hill and are pleased to welcome Dr. Sewaralthahab, one of the area’s most well-respected nephrologists, to lead this new initiative.” “We are proud to partner with Orchard Hill Rehabilitation & Healthcare Center to bring education along with resources, services and support to patients at the facility and our community,” said Pattie Dash, NKFMDDE’s executive director. “We believe that one of the best ways to serve is to invest in our community to help raise awareness for the prevention and treatment of kidney disease.”
Monthly CKD Support Group is Open to the Public
Orchard Hill’s CKD support group meetings will be held on the third Thursday of the month. Free and open to the public, they will take
place at the skilled nursing facility, 111
West Rd., Towson Md. 21204. NKFMDDE
will bring in speakers to address a range of key concerns. Each meeting will
include a dietitian providing nutrition information. Participants will then
have a general discussion, getting tips and advice from one another on managing
CKD. For a schedule or to register, visit NKFMDDE’s Facebook page.
Clinical trial released after nearly 1,000 people participated
February 7, 2019, New York,
NY– A clinical trial that followed nearly 1,000 people using a new home test for chronic kidney disease (CKD) shows a high percentage of the participants were happy with the process and preferred it to getting tested in a doctor’s office. The National Kidney Foundation (NKF), Geisinger and Healthy.io evaluated smartphone home testing for CKD. Patients with hypertension – a major risk factor for CKD – that had not been tested in the previous 12 months were given the option of using a smartphone urinalysis test at home and the results were impressive. Of the participants that received a kit, 71 percent adhered to testing, 98 percent of patients who attempted a home test succeeded, and 89 percent stated they prefer home testing over testing at the physician’s office. Among patients who completed home testing mean score for whether they would recommend home urine testing to a friend or colleague was 8.9/10 (i.e. Net Promoter Score of 62). Despite current guidelines that recommend CKD testing yearly for adults with diabetes and/or hypertension, less than 10 percent of those with hypertension and less than 40 percent of those with diabetes are currently completely assessed. “Albuminuria is often the earliest sign of kidney disease, and yet, in the majority of people at increased risk due to diabetes or hypertension, it is not tested,” said Kerry Willis, PhD, NKF Chief Scientific Officer. “This new test has the potential to help millions of patients find out they have CKD while there is still time to prevent progression to kidney failure.” About 30 million American adults are affected by CKD, but nearly 90 percent don’t know they have this life-threatening illness. Early intervention can slow the progression of the disease, which can be deadly if not caught in its early stages. The trial investigators were Julie Leddy; Christina Yule; Elisabeth Graboski; Jamie Green, MD; Juli Molecavage, DHA, MHA; and Alex R. Chang, MD, MS, all from Geisinger; and Josef Coresh, MD, of Johns Hopkins University. The investigators concluded that the use of the mailed, smartphone kits may offer an additional modality to improve compliance with albuminuria screening and may be preferable for some patients. The trial, which began in April:
Examined the effect of mailed, Healthy.io smartphone urinalysis kits (Dip.io test) to improve detection of albuminuria;
Randomized 999 non-diabetic patients with hypertension, who were receiving primary care at Geisinger who had never previously completed screening. Patients were randomized into two groups; one group receiving the usual care; and one group who received a mailed Healthy.io urinalysis kit;
All patients received an educational letter and an electronic lab order for urinalysis to be done at a Geisinger lab;
Half of the patients (intervention) also were called to ask if they would like to receive a home smartphone urinalysis test; 253 were reached by phone and 69/97 (71.1 percent) of consented patients completed the home test;
Patients were followed for three months to see if screening was completed; patients with abnormal results from the home test were contacted by the study physicians.
Overall, the intervention increased proteinuria screening completion by (28.9% vs. 18.0%; p<0.001). There was no difference in the proportion of the detected albuminuria cases between the intervention and control groups. “The home testing was very well-received and easy to do for patients,” Dr. Chang said. “Important limitations of this study were that we required patients to consent by telephone before sending testing kits. Also, few patients who had abnormal urinalysis findings went to the clinic lab for their confirmation testing in the three-month follow-up period. Future research should evaluate optimal screening and confirmation testing strategies-all completed at the comfort of home.” NKF provided the funding for the trial and the Geisinger Institutional Review Board approved the research study. Kidney Disease FactsIn the United States 30 million adults are estimated to have chronic kidney disease—and most aren’t aware of it. 1 in 3 American adults are at risk for chronic kidney disease. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history. People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure). About GeisingerOne of the nation’s most innovative health services organizations, Geisinger serves more than 1.5 million patients in Pennsylvania and New Jersey. The system includes 13 hospital campuses, a nearly 600,000-member health plan, two research centers and the Geisinger Commonwealth School of Medicine. Geisinger is known for its focus on caring and innovative programs including the ProvenCare® best-practice approach to maximize quality, safety and value; ProvenHealth Navigator® advanced medical home; Springboard Health® population health program to improve the health of an entire community; ProvenExperience™ to provide refunds to patients unhappy with their care experience; and Geisinger’s MyCode® Community Health Initiative, the largest healthcare system-based precision health project in the world. With more than 215,000 volunteer participants enrolled, MyCode is conducting extensive research and returning medically actionable results to participants. A physician-led organization, with approximately 32,000 employees and more than 1,800 employed physicians, Geisinger leverages an estimated $12.7 billion positive annual impact on the Pennsylvania and New Jersey economies. Repeatedly recognized nationally for integration, quality and service, Geisinger has a long-standing commitment to patient care, medical education, research and community service. For more information, visit www.geisinger.org, or connect with us on Facebook, Instagram, LinkedIn and Twitter. About Healthy.ioHealthy.io is transforming prevention for kidney disease for the millions of patients who fall through the cracks of the existing, centralized system. Having created a new category of smartphone urinalysis that can replace the centralized lab device, the company offers a full service that addresses the staggering cost and burden of CKD. With an ‘adherence as a service’ offering, patients get a test kit sent home and results are automatically transmitted to their medical record for physician review. Patients can test themselves at their own convenience, detect the disease early and get the care they need. In Israel and Europe, Healthy.io’s digital urinalysis pathways are already a reality for over 100,000 patients. The National Kidney Foundation (NKF) is the largest, most comprehensive, and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the U.S. For more information about NKF, visit www.kidney.org.
My father William Buschman was 28 years old when he was diagnosed with diabetes. Unfortunately this disease caused other problems for him late in life. At 42 years old he lost his sight completely, and months later he was told he had kidney failure. Both kidneys stopped working, I was about 12 years old and had watched my father fight so many obstacles.
As a family we learned how to make it through day by day with doctor appointments and dialysis. I learned the hardships that people and their loved ones go through daily to survive, to live another day while waiting for a transplant. My father was very blessed to receive a call the day before Easter in 2001. The next day he had received a kidney from a young boy from Louisiana. I am thrilled to share that 18 years later he still has the kidney and is keeping busy building amazing furniture. It’s an honor to be part of the National Kidney Foundation Serving Maryland & Delaware’s Santé A Taste of Baltimore event. They have helped my family and so many others. Their help and support to those trying to make it another day, lightens the load of the world from their shoulders. I’m proud to be a part of this opportunity because the NFKMDDE has done so much to help raise money and spread their generosity to those in rough situations. I am glad that Roy’s has provided an outlet of support for a cause that I am so passionate about.
Join us on Thursday, February 28th for Santé A Taste of Baltimore
With over 300 guests anticipated, this premier food and beverage event will feature delicious creations from 20 of Baltimore’s best restaurants, caterers and chefs, paired with enticing drinks. Adding to the fun will be celebrity judges, the People’s Choice competition, entertainment, raffles and a silent auction. Admission to this business causal evening is $100/person or $2,500 for a table.
For more information to become a sponsor or to purchase tickets click here!
Our Journey …. Our Fight! My name is Katelyn and I am the mother of a beautiful baby girl, Natalee. I found out that Natalee was missing her right kidney when I went for a gender ultrasound. My doctor ended up sending me to Annapolis to ensure that everything would be okay with Natalee. I am sure you can understand my concern and fears! As her mother I wanted my baby to be perfect!
February 1, 2016 Natalee made her arrival and 24 hours later they did a test called a VCUG; the test results came back, and she had a grade 5 reflux (hydronephrosis). Big words for such a little girl.
Natalee’s doctors have had her on antibiotics as a preventive measure since day one. The beginning of April came, and Natalee was burning up (she felt like she was sunburned.) We immediately went to Peninsula Regional Medical Center (PRMC) where they discovered that she had a very bad UTI.
Natalee was placed on antibiotics to treat the infection and medicine for her fever, it still wouldn’t break so we were flown to Johns Hopkins Hospital. When we arrived, we also found out that Natalee had a kidney infection which eventually the infection got into her blood stream causing her to have sepsis. We almost lost Natalee by the skin on our teeth. I didn’t lose hope and Natalee didn’t stop fighting! She had a few blood transfusions as well as a transfusion for platelets. After about four weeks we were able to come home.
Natalee ended up having high potassium because of the infection; she was hospitalized and transferred to Johns Hopkins Hospital a few more times after the last incident due to high potassium. She is on a special formula that you can only order online called Similac 60/40. In July we went to our hospital (PRMC) and was transferred to Johns Hopkins once again for a UTI. While at Johns Hopkins they did an ultrasound on her kidney to check on it; they saw a lot of debris which required surgery to have a Nephrostomy tube placed in her kidney to drain into her diaper, this is also how she uses the bathroom to urinate. The nephrostomy tube was only temporary till November.
Natalee has pulled her nephrostomy tube out several times leaving us multiple trips to Johns Hopkins for more surgeries just to have the tube placed back in. November 21, 2016 came, and Natalee was finally big enough to have her ureter reconstructed. The purpose of the reconstruction was to fix the reflux of her kidney, so she can use the bathroom regularly and not get urinary tract infections as well as kidney infections. Since February 16, 2017 we have not had one hospital visit/stay since her surgery. This first year of Natalee’s life was not easy by any means! In the beginning of March 2017 Natalee had another VCUG done to see if her surgery was a success.
Unfortunately, after her VCUG was done, her surgery was not successful. Up until April of 2018, we had a lot of hospital visits and stays due to urinary tract infections. On April 10, 2018 she had the same procedure done with a different surgeon. Finally, on July 18, 2018 we went for a visit to see if this surgery worked and it did!
Natalee no longer has kidney reflux! What a relief! We followed up with the urologist and we no longer have to go and see them unless Natalee has any further complications. We can now enjoy living a normal two-year-old life outside of the hospital. We do get ultrasounds done to her kidneys every three months to make sure there is no swelling.
I am grateful to the support of the National Kidney Foundation! For more information about the resources and support they offer visit www.kidneymd.org.
Won’t you please help families like mine and make an IMPACT today? YOU can be a beacon of LIGHT & HOPE for those who suffer with kidney disease. Your donation will make a difference in our community.
DONATE TODAY – there are only a few hours left to make your meaningful year-end gift and accelerate the pace of our work locally in 2019! Will you join me?