Statement by the National Kidney Foundation (NKF)NEW YORK, January 11, 2019 / PRNewswire / – Chronic kidney failure (CKD) affects more than 30 million Americans. It causes more deaths than breast cancer or prostate cancer and about 90% of people with kidney failure do not even know that they have it. The best treatment is early detection to slow down or stop the disease. Early treatment includes diet, exercise and medications. However, once the kidneys fail, dialysis or kidney transplant is necessary to survive.

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Nearly 680,000 Americans have irreversible renal failure, or end-stage renal disease (ESRD)and requires dialysis or a kidney transplant. More than 475,000 ESRD patients receive dialysis at least three times a week to replace renal function. Nearly 100,000 Americans are currently on the waiting list for a kidney transplant. Depending on the patient's place of residence, the average waiting time before a kidney transplant can range from three to seven years. The National Kidney Foundation is asking Congress and the administration to make organ transplantation a top priority and has identified several critical areas to be addressed from a legislative and regulatory standpoint. These priorities will create a strategic and effective path to increasing the number of kidney transplants and decreasing the number of patients waiting.

1. Living gift
a. Expand financial assistance to living organ donors to cover all organ donation expenses, including lost wages; travel expenses, including transportation, accommodation and food; child care expenses or dependents incurred during the donor's recovery; medical care for living donors and donation monitoring; administrative formalities or legal fees related to the donation; and other expenses related to the donation.
b. Pass it Living Donor Protection Act to ensure the protection of the employment of organ donors who must take sick leave to recover surgical procedures and insurance coverage against donations of organs, so that donors Organs are not denied or do not pay higher premiums because they donated an organ.
c. Support community programs, such as the National Kidney Foundation THE GREAT ASK: THE GREAT DATA, who seek to educate kidney patients and potential kidney donors about the benefits and risks of living donation.

2 Medicare and Medicaid reimbursement
a. Align Medicare and Medicaid reimbursement on health care providers to encourage earlier care of patients with chronic kidney disease and preventative grafts for those who progress to ESRD.

3 The National Kidney Foundation has recommended a demonstration program at the Centers for Medicare and Medicaid Innovation. it would take a patient-centered approach to test changes in payment and delivery of care.
a. This program would focus on reducing the demand for organs by preventing or slowing the progression of kidney failure. For those who are progressing to kidney failure, this would increase the number of people who undergo a kidney transplant, ideally even before needing to start dialysis.

4 Permanent extension of Medicare coverage of immunosuppressive drugs for kidney transplant recipients
a. Currently, patients only receive Medicare coverage 36 months after the transplant. Permanent extension of Medicare coverage immunosuppressive drugs for the life of a transplant is of crucial importance. It will allow recipients to receive immunosuppressive medications they must take daily to help reduce the risk of organ rejection. For many patients, the costs associated with immunosuppressive drugs are prohibitive, which causes them to skip doses and cause organ rejection or, in many cases, not to attempt to get a transplant .

5 Decrease rejection of kidneys that could be used to improve patient outcomes and quality of life
a. Changes to transplant program parameters used by the Network for Organ Procurement and Transplantation (OPTN)

• The current measure of survival observed at the expected survival of the transplant for one year is very successful, but it is generally thought that this measure has the unintended consequence of causing too conservative behavior when assessing the high-risk kidneys leading to to the disposal of organs quality of life in the short and long term.

• The NKF advocates removing the use of high-risk kidneys from this metric and developing a patient's quality of life metric one year after transplant survival.

• Unfortunately, it is not possible to accurately predict the performance of an organ. Further research in this area of ​​organ performance is needed.
b. Increase the transparency and shared decision-making of patients in the organ offers made to patients. Currently, the patient's consent, at the time of registration on the transplant, is required to accept kidneys with a high donor profile index, HIV-positive kidneys and / or hepatitis C. Patients always have the right to refuse such an organ when an offer is presented. However, patients may not be aware of any high risk kidney organ offers, leaving the clerk (or program representative) to decide alone whether the organ is suitable. NKF believes that patients should be informed of all offers.
c. OPTN should identify transplant programs that never or very rarely accept high-risk kidneys and modify the kidney allocation policy to allow the organ procurement organizations to direct the donations of high-risk kidneys to the programs most likely to use them. Transplantation programs that do not use these organs may voluntarily choose not to participate in the process of allocating these kidneys. Disclosure of the decision of the transplant program to disengage or a transplant program ignored because of the likelihood that it will not accept a high-risk kidney should be communicated to patients so that patients can determine if it is necessary to resort to another less risky transplant program.
re. OPTN should develop a standardized process that all transplant programs and donor hospitals must follow to determine their real interest in the viability of an organ offering in order to speed up the period during which the kidney is out of the body and stored cold. This includes standardization on how to conduct a biopsy when a transplant program requires one, and on how to obtain and review organ photos for the transplant program so to determine the ease of use before accepting the assignment. This also includes the need for qualified pathologists to interpret and report the results of the deceased donor's kidney biopsies at the time of organ removal.
e. Modify the kidney allocation policy to require that each OPA has at least three backup transplant programs ready to accept the kidney if the first program declines. This will reduce the time during which the kidney is pulled out of the body and stored cold, which decreases the quality of the organ, increasing the risk of loss.
F. Changes must be made to Medicare reimbursement to allow for a higher risk-adjusted payment when a high-risk kidney transplant is grafted. The transplant program entails additional costs for the transplantation of these organs and the reimbursement must therefore also be adjusted. This would eliminate an obstacle to better use of high-risk kidneys.

Facts about kidney disease
In the United States, an estimated 30 million adults have chronic kidney disease– and most of them are not aware of it. One in three American adults is at risk for chronic kidney disease. Risk Factors for Kidney Failure include diabetes, high blood pressure, heart disease, obesity and family history. People of African American, Hispanic, Native American, Asian or Pacific Island descent are at increased risk of developing the disease. African Americans are three times more likely than whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end-stage renal failure (renal failure). The National Kidney Foundation (NKF) is the largest, most comprehensive and oldest organization to raise awareness, prevent and treat kidney disease. For more information on the visit of the NKF www.kidney.org. Facebook.com
Twitter: @NKF
www.kidney.org

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