Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies
Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies
Posted on October 27, 2016 by nkf _advocacy
By Kevin Longino, CEO and Leilah Sampson, Kidney Advocacy Committee Patient Liaison
As kidney transplant recipients and advocates we were enthusiastic and hopeful to learn that the Food and Drug Administration (FDA) had scheduled a public meeting for organ transplant recipients to share their experiences with scientists and decisions makers in new drug development as part of the Patient Focused Drug Development Initiative. For the past few years the National Kidney Foundation (NKF) has advocated for FDA to include organ recipients as part of this initiative, so we were pleased that our advocacy efforts were successful. However, we also know following the meeting much more advocacy will be needed to advance solutions to the issues that organ recipients raised during the meeting and the National Kidney Foundation is committed to this effort. First and foremost, if you are reading this and have not submitted your own comments on the questions raised during the meeting you can do so here. Additionally, since we were selected as panelists we wanted to share our thoughts and experiences at the meeting.
Prior to the event, we were asked to respond to ten questions divided into two topics on life post organ transplant. The first topic was titled, “Disease Symptoms and Daily Impacts That Matter Most to Patients”. This topic focused mainly on how your symptoms (post transplant) affected you emotionally and physically in completing daily tasks. The second topic titled, “Patients’ Perspectives on Transplant and Treatment Options” focused more on how you are managing your post transplant treatment regimen. As we mentioned, you can submit your own responses to these questions as well and we encourage you to do so.
Leilah participated in the panel on topic one, as one of five panelists and the only adult kidney transplant recipient alongside of the Pediatric kidney representative and lung, liver, and heart recipients. In preparation for the meeting, Leilah met with FDA staff in charge of the meeting who expressed appreciation for her honesty about her post transplant experience not being “rainbows and sunshine”, but more so trial and error. They also felt because she was a transplant newbie; she could represent a fresh perspective that would help balance the other seasoned panelists perspectives. FDA briefed Leilah on what to expect when she arrived and to prepare a narrative style version of her comments (as patients get nervous on the panel). Leilah set the intention for her speech to reflect her life of self compassion and honoring her transplant process.
When we arrived at the campus we were appreciative to see so many patients, caregivers, researchers and FDA staff all committed to hearing the voices of organ transplant recipients. The first half of the day was all patient discussion on comorbidities, daily challenges, medications and side-effects post-transplant. Many recipients, like Leilah, shared their experiences having depression and anxiety post transplant. Many also highlighted social stigma as the public expecting them to be “cured” from disease with their new organ, when in reality the need to take multiple medications at specific times of the day, and that had various side-effects reminded them they were still not “normal”. Some participants indicated hesitancy to discuss symptoms post transplant with their healthcare professionals as they had received comments back that they should learn to adapt and instead focus on the fact they were still alive and no longer on dialysis.
Polling questions were asked of the audience and multiple choice responses given as options, but throughout the polling there were a significant number of patients who experienced challenges not captured by the multiple choice responses and instead indicated “other” experiences during the polling. Some of the comments raised in those “other” categories included: fear of rejection, but also fear of infection, skin cancer, and other cancers due to immunosuppression therapies – many participants had also experienced these complications.
The addition of the afternoon sessions was different than past PFDD meetings for other conditions. The afternoon included scientific presentations and panels on non-adherence to transplant regimens and interventions to improve adherence. Most of the patients participating in person indicated that while they faced challenges with taking multiple medications, overall they were adherent. Although they also recognized they were perhaps not reflective of all organ transplant recipients. Webinar participants indicated through polling a greater difficulty with adherence than those participating in person. We and other participants discussed how we were active in working with our care team to modify dosing of medications to reduce side effects. Kevin specifically indicated a need to have personalized immunosuppressive regimens, which could improve both adherence and reduce side effects. We and other participants also acknowledged a need for greater psychosocial support from our care team post-transplant. Of course, we were all supportive of one organ recipient’s comment on the need to have one magic combination pill that we only have to take once a day – oh and it could come with no side effects too.
We were surprised to see so little interaction from the FDA staff. They fulfilled their duty of hearing the voices of the patients. After a long day of discussions, presentations, and polling about symptoms and the impact of organ transplant regimens on patients; we left better educated but even more motivated. More importantly, we left with the obligation to spread what we learned from the research and opinions of other seasoned organ transplant patients to the pre-transplant community. I think we all agreed that laying the foundation for post-transplant life begins with implementing support and coping skills long before transplantation occurs. Although we have only scratched the surface of trying to understand how to better support organ transplant patients; we are pleased to know that the FDA, among many other organizations, are opening their ears to hear from us – the patients. If you are an organ recipient please do take the time to send your responses to the FDA by November 27, 2017, they are listening and comments will be included in the final report. You can also view the presentations and listen to the recorded meeting here.
PLEASE SIGN AND SHARE THE PETITION SUPPORTING THE COMPREHENSIVE IMMUNOSUPPRESSIVE DRUG FOR KIDNEY TRANSPLANT ACT (H.R. 6139)
Please sign and share:
Pass The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act !
From the NKF:
On September 22nd, Representatives Burgess (R-TX), Kind (D-WI), Harper (R-MI), Meehan (R-PA), Herrerra Beutler (R-WA), Cooper (D-TN), Griffith (R-VA), and McDermott (D-WA) re-introduced the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139). H.R. 6139 will serve as a safety net by assisting kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new transplant.
Individuals with end-stage renal disease (ESRD), who require dialysis or a transplant to survive, are eligible for Medicare regardless of age or other disability. If these ESRD patients remain on dialysis, there is no time limit on their Medicare eligibility. However, despite quality of life benefits and the cost-effectiveness associated with transplantation compared to kidney dialysis, recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. As a result, they often face the challenge of finding affordable coverage that allows them to obtain medications required to maintain their new kidney. If the transplanted kidney fails, they must return to dialysis and wait again in the hopes of receiving another transplant. Both of these options are more costly and more detrimental to patient health than maintaining the new kidney.
The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would extend Medicare for immunosuppressive medications indefinitely, ensuring patients have access to these lifesaving medications. Only immunosuppressive coverage would be extended and all other Medicare coverage would end 36 months post-transplant, as it does now. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include this benefit. By supporting lifetime immunosuppressive coverage, Congress will help improve long-term transplant outcomes, reduce the number of kidney patients who require another transplant, and enable more patients to choose transplantation.
Please contact your Representatives and urge them to cosponsor the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act to help transplant recipients keep access the medications they need to maintain their new kidney.
“Extending Medicare coverage of immunosuppressive drugs for kidney transplant recipients is a critical step to ensuring a patient’s best chance of success post-transplant.” – Kevin Longino, CEO of the National Kidney Foundation."
Link to Petition : https://www.change.org/p/u-s-house-of-representatives-the-comprehensive-immunosuppressive-drug-coverage-for-kidney-transplant-act-h-r-6139
Tireless advocate for organ donation finally gets 'the call'
James Myers of Gary poses with U.S. Sen. Joe Donnelly in Washington D.C. on March 16 on behalf of the National Kidney Foundation while advocating for the Living Donor Protection Act. (Handout - James Myers)
Jerry DavichContact ReporterJames Myers looked weary but cheerful when he returned home from an Indianapolis hospital with his little bundle of joy.
It weighed a quarter of a pound, and was the size of a fist. It's name is "Woody."
"It's a family name," said Myers, 61, of Gary.
After nearly four years of waiting and wondering, Myers finally got the call he had been praying for, hoping for, advocating for. It came on April 26.
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PoliticsChatterAt 11 a.m. that day, Myers posted on his Facebook page: "I just got THE call. IU says they have a kidney for me!"
This post was dramatically different from hundreds of previous posts over the past few years, many which read like this one from April 18 of this year: "My name is Jim Myers, from Crown Point, IN, and I am an ESRD patient currently on dialysis, awaiting a transplant. I am on the list. If you are interested in becoming a donor…"
I read dozens of those somber posts, each one pleading for a life-saving transplant amid other social media friends who posted about their pets, chronic gripes or daily errands. I always wondered how Myers felt while reading such nonsense, relatively speaking.
"I am a type O blood type," Myers wrote again and again to friends, followers and strangers. "All medical costs are covered by insurance and incidental costs can be worked out."
When I first met Myers in 2013, he sat quietly in a large chair inside the Fresenius Medical Center in Crown Point. He read a newspaper while his blood was artificially cleansed of waste by a whirring dialysis machine that beeped every few seconds.
With a blanket draped over his legs and a catheter connected to his chest, Myers sat patiently for hours, as most dialysis patients must do. He visited there three times a week for at least four hours each time to undergo hemodialysis, which replaces the function of his failing kidneys.
Myers suffered from polycystic kidney disease, which took the lives of several family members, including his father, he said. Though Myers was diagnosed in his younger days, his positive lifestyle choices the past three decades only delayed the inevitable.
His genetic fate caught up to him in 2012 and he had been on dialysis ever since. "I have no choice. You either submit to dialysis or you die," Myers told me that day.
James Myers, 61, heads into surgery April 27 with a thumbs up, flanked by his "sweetheart" Tori Pines, his son, Jim Myers, and his son's wife, Monica, at Indiana University Health hospital in Indianapolis. (Handout - James Myers)Chronic kidney disease may be caused by diabetes, high blood pressure and other disorders. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant to maintain life.
This was the dilemma Myers faced each day, each week, each month.
He didn't settle for only waiting and wondering or for posting pleading messages on social media for a life-saving transplant.
Myers became a tireless advocate for kidney donation, organ donation, live donor legislature and anything related to kidney disease. He put a local face on the national "Share your spare" live donor campaign.
He became a state advocate for the National Kidney Foundation, and an ambassador for Dialysis Patient Citizens and the Polycystic Kidney Disease Foundation.
He became an outspoken activist on behalf of thousands of dialysis patients throughout Northwest Indiana. He became their voice. And their hope.
He traveled to Washington, D.C., to meet with lawmakers, including U.S. Rep. Pete Visclosky, D-Merrillville, and U.S. Sen. Joe Donnelly, D-Ind. On behalf of the Kidney Advocacy Committee, he advocated against budget cuts and for the Living Donor Protection Act.
Myers alerted us that he was among more than 400,000 Americans with irreversible kidney failure. And that more than 26 million people in this country struggled with chronic kidney disease, a figure that's growing each year. Millions of others are at increased risk but have no clue about it, according to the National Kidney Foundation.
"It could be any of us someday sitting in the same dialysis chair as Myers," I wrote in 2013.
James Myers, 61, of Gary, recovers from kidney transplant surgery April 27 at Indiana University Health hospital in Indianapolis. (Handout - James Myers)Since then, I've talked with several other Northwest Indiana residents who were diagnosed with kidney disease or kidney failure and had to undergo dialysis. Some of these patients are kids.
"These children have unique issues among dialysis patients, and are one of the fastest growing dialysis groups," Myers told me recently.
This is why he started a new foundation for pediatric dialysis patients and their parents. It's something Myers is very proud of, and rightfully so.
He has met hundreds of patients through his advocacy. His Facebook page lists post after post for other people also waiting for that phone call. The same call Myers received April 26.
"Jim, we have a kidney for you," the nurse said.
That day, Myers was admitted into Indiana University Health in Indianapolis, in the organ transplant unit. His transplant surgery took place the next day, April 27, under the care of Dr. William Goggins.
The procedure went smoothly and Myers said there were no serious problems.
Because Myers is polycystic, surgeons removed only one kidney and transplanted a new one. They will remove his other kidney at another time.
Myers is thrilled to have the one kidney. Still, he's now waiting and wondering if the anti-rejection drugs will allow his body to accept it. Only time will tell.
He's not sure if all his advocacy played a role in getting that call. Or maybe it was fate. Or divine intervention. Or random luck. He also doesn't know the donor of his new kidney. He's forever thankful.
Within hours after he returned home, his tireless advocacy got transplanted into a new campaign. He asked for signatures on his petition for the Living Donor Protection Act.
"I got my chance, can you help someone else get theirs?" he asked.
For more information on kidney disease or to become a living donor or organ donor, call the National Kidney Foundation at 800-622-9010, or visit https://www.kidney.org/.
Copyright © 2016, Post-Tribune
Funding and Disbursement Assistance -
The ALODN helps donors find resources for financial support, but now we also have a service to help donors’ recipients provide financial support to their donors without having to worry about all the details. We will verify donor benefits, reimbursable…
This is a video I made for the American Association of Kidney Patients. I was very fortunate to have been named as the very first winner of the Social Media Patient Activism Award. Many thanks to the AAKP and Paul Conway!
THE CASE FOR MORE TESTING OF PERSONS WITHOUT SYMPTOMS OR HISTORY FOR CKD
I read an article yesterday that shocked me. In Renal and Urology News, an article entitled, “Nephrology Society Objects to Call Against Kidney Screening, ” http://www.renalandurologynews.com/nephrology-society-objects-to-call-against-kidney-screening/article/317395/?DCMP=EMC-RENALUROLOGY_ETOC&CPN=&spMailingID=7553773&spUserID=MzE1MTQ0Mzc2NDcS1&spJobID=104488077&spReportId=MTA0NDg4MDc3S0, caught my eye. According to the article, the American College of Physicians, (ACP) had written a paper recommending against screening for Chronic Kidney Disease in adults without symptoms and without a history of renal failure.[i] The American Society of Nephrology (ASN) wasted no time in responding the very next day that this approach was not acceptable.[ii] They called the statement “irresponsible” and confirmed that it “strongly recommends” regular screening for kidney disease, regardless of an individual's risk factors.[iii]
“ASN and its nearly 15,000 members—all of whom are experts in kidney disease—are disappointed by ACP's irresponsible recommendation,” asserted ASN executive director Todd Ibrahim in the statement.
Amir Qaseem, MD, PhD, MHA, and coauthors from the ACP's Clinical Guidelines Committee concluded that the recommendation against CKD screening of asymptomatic adults without CKD risk factors is supported by weak/low-quality evidence. The group's research had identified no randomized, controlled trials that compared the effect of systematic CKD screening versus no CKD screening on clinical outcomes or that evaluated the harms of such screening.[iv]” (Emphasis added).
The American Society of Nephrology (ASN) recommends that all adults undergo routine screening for chronic kidney disease (CKD), the eight leading cause of death in the United States. This contradicts screening guidelines recently released by the American College of Physicians (ACP).
“If detected early in its progression, kidney disease can be slowed and the transition to dialysis delayed. This evidence-based fact is why regular screening and early intervention by a nephrologist is so important to stemming the epidemic of kidney disease in the United States and why ASN strongly recommends it,” said ASN President Bruce A. Molitoris, MD, FASN.[v] (Emphasis added).
The ASN was quick to point out that because kidney disease is largely asymptomatic in its early stages, one of the main methods to fight the disease and the spread of the disease is early detection and early intervention.[vi] Only early detection/intervention can slow progression of the disease and help patients maintain vital kidney function and quality of life.[vii] Equally objectionable to the ASN was the ACP’s recommendation that there should be no testing of a person taking an ACE inhibitor or an angiotensin II receptor blocker.[viii] Citing high blood pressure and diabetes as the two leading risk factors for the development of CKD, the ASN “emphasizes the importance” of proteinuria testing in adults being treated with antihypertensive medications.[ix]
I was shocked when I read this, so I looked up the genuine article of the ACP’s findings, http://annals.org/article.aspx?articleid=1757302. Sure enough, I found the following findings:
“Recommendation 1: ACP recommends against screening for chronic kidney disease in asymptomatic adults without risk factors for chronic kidney disease. (Grade: weak recommendation, low-quality evidence)
Recommendation 2: ACP recommends against testing for proteinuria in adults with or without diabetes who are currently taking an angiotensin-converting enzyme inhibitor or an angiotensin II–receptor blocker. (Grade: weak recommendation, low-quality evidence).[x]”
What I wanted to discuss with you today is the need for testing and the things that I have been taught about Chronic Kidney Disease (CKD), and the results of undetected kidney disease. According to the National Kidney Foundation, 26 million American adults are estimated to have CKD; many do not know it. Early signs are hard to detect and are easily missed.[xi] 2,492,040 Medicare patients are estimated to have CKD that has not yet become kidney failure.[xii] 594, 374 Americans have irreversible kidney disease or end-stage renal disease (ESRD), therefore require dialysis or a transplant to survive.[xiii]
415,013 of ESRD patients receive dialysis at least 3 times a week, approximately 4 hours a session to replace kidney function.[xiv] 87,460 people with ESRD die every year.[xv] There are 179,631 Americans living with a functioning kidney transplant and in 2012, 16,485 Americans received a kidney transplant.[xvi] According to UNOS, as of the writing of this blog, there are 98,943 Americans on the kidney transplant waiting list.[xvii] 44% of ESRD patients had a primary diagnosis of diabetes, the leading cause of ESRD.[xviii] 24% of ESRD patients had a primary diagnosis of hypertension (high blood pressure), the second leading cause of ESRD.[xix] Nearly 3000 people are added to the kidney waiting list every month; 13 people die each day while waiting for a life-saving transplant; Every 10 minutes someone is added to the transplant list.[xx]
Kidney disease is expensive. 76.3% of new ESRD patients apply for Medicare.[xxi] The annual cost of the Medicare ESRD program is $28.4B.[xxii] The annual Medicare costs to treat people with CKD is $41B or 22.5% of Medicare spending.[xxiii] $124,643 is the average Medicare cost for a kidney transplant in his first year.[xxiv] $86,316 is the average amount spend on a dialysis patient annually.[xxv] After the first year, $24,612 is what Medicare spends on a functioning transplant patient per year, primarily for anti-rejection medication.[xxvi]
Recently in a statement by the NKF to the Senate Committee On Appropriations; Subcommittee On Labor, Health And Human Services, Education, And Related Agencies concerning the Fiscal Year 2014 Appropriations Centers For Disease Control And Prevention Chronic Kidney Disease Program on May 6, 2013, the Foundation said,
“The prevalence of CKD in the United States is higher than a decade earlier. This is partly due to the increasing prevalence of the related diseases of diabetes and hypertension. It is estimated that CKD affects 26 million adult Americans (1) and that the number of individuals in this country with CKD who will have progressed to kidney failure, requiring chronic dialysis treatments or a kidney transplant to survive, will grow to 712,290 by 2015 (2). Kidney disease is the 9th leading cause of death in the U.S. Furthermore, a task force of the American Heart Association noted that decreased kidney function has consistently been found to be an independent risk factor for cardiovascular disease (CVD) outcomes and all-cause mortality and that the increased risk is present with even mild reduction in kidney function. (3) Therefore addressing CKD is a way to achieve one of the priorities in the National Strategy for Quality Improvement in Health Care: Promoting the Most Effective Prevention and Treatment of the Leading Causes of Mortality, Starting with Cardiovascular Disease.
CKD is often asymptomatic, a “silent disease,” especially in the early stages. Therefore, it goes undetected without laboratory testing. In fact, some people remain undiagnosed until they have reached CKD Stage 5 and literally begin dialysis within days. However, early identification and treatment can slow the progression of kidney disease, delay complications, and prevent or delay kidney failure. Accordingly, Healthy People 2020 Objective CKD–2 is to “increase the proportion of persons with chronic kidney disease (CKD) who know they have impaired renal function.” Screening and early detection provides the opportunity for interventions to foster awareness, adherence to medications, risk factor control, and improved outcomes. Additional data collection is required to precisely define the incremental benefits of early detection on kidney failure, cardiovascular events, hospitalization and mortality. Increasing the proportion of persons with CKD who know they are affected requires expanded public and professional education programs and screening initiatives targeted at populations who are at high risk for CKD. As a result of consistent congressional support, the National Center for Chronic Disease Prevention and Health Promotion at CDC has instituted a series of projects that could assist in attaining the Healthy People 2020 objective. However, this forward momentum will be stifled and CDC’s investment in CKD to date jeopardized if line-item funding is not continued.
As noted in CDC’s Preventing Chronic Disease: April 2006, Chronic Kidney Disease meets the criteria to be considered a public health issue: (1) the condition places a large burden on society; (2) the burden is distributed unfairly among the overall population; (3) evidence exists that preventive strategies that target economic, political, and environmental factors could reduce the burden; and (4) evidence shows such preventive strategies are not yet in place. Furthermore, CDC convened an expert panel in March 2007 to outline recommendations for a comprehensive public health strategy to prevent the development, progression, and complications of CKD in the United States.
The CDC Chronic Kidney Disease program has consisted of three projects to promote kidney health by identifying and controlling risk factors, raising awareness, and promoting early diagnosis and improved outcomes and quality of life for those living with CKD. These projects have included the following:
(a) Demonstrating effective approaches for identifying individuals at high risk for chronic kidney disease through state-based screening (CKD Health Evaluation and Risk Information Sharing, or CHERISH).
(b) Conducting an economic analysis by the Research Triangle Institute, under contract with the CDC, on the economic burden of CKD and the cost-effectiveness of CKD interventions.
(c) Establishing a surveillance system for Chronic Kidney Disease. Development of a surveillance system by collecting, integrating, analyzing, and interpreting information on CKD using a systematic, comprehensive, and feasible approach will be instrumental in prevention and health promotion efforts for this chronic disease. The CDC CKD surveillance project has built a basic system from a number of data sources, produced a report and created a website program http://www.cdc.gov/diabetes/projects/kidney/ consisting of information on preventing and controlling risk factors, the importance of early diagnosis, and strategies to improve outcomes. The website, publicly available for clinicians, health professionals, public health policy makers, and patients, also provides links to a number of publications and reports. The next steps include exploring state- based CKD surveillance data ideal for public health interventions through the state department of health…
In summary, undetected Chronic Kidney Disease can lead to costly and debilitating irreversible kidney failure. However, cost-effective interventions are available if patients are identified in the early stages of CKD. With the continued expressed support of Congress, the National Kidney Foundation is confident a feasible detection, surveillance and treatment program can be established to slow, and possibly prevent, the progression of kidney disease. Thank you for your consideration of our testimony.” (Emphasis added).
The NKF has initiated a program they call KEEP.[xxvii] According to the NKF, The Early Evaluation Program (KEEP®), reached over 185,000 individuals at increased risk for developing kidney disease between August 2000 and June 2013.[xxviii] KEEP screenings were offered across the United States to individuals 18 years and older with high blood pressure, diabetes or a family history of kidney failure. KEEP helped to raise awareness about kidney disease among high risk individuals and provide free testing and educational information, so that kidney disease and its complications could be prevented or delayed.[xxix]
KEEP participants received the following services at the screening:
•Blood pressure, height, weight and waist circumference measurements
•Blood and urine tests for signs of diabetes and kidney disease, including
◦Blood glucose check blood sugar
◦Hemoglobin check blood test for anemia
◦Albumin to creatinine ratio (protein in urine)
◦Serum creatinine (measures how well kidneys are filtering blood)
◦Estimated Glomerular Filtration Rate (test for kidney function)
◦Total cholesterol, HDL, LDL and triglycerides
◦Some participants will also had their calcium, phosphorus, PTH and/or Hemoglobin A1c levels checked.[xxx]
After the screening, the National Kidney Foundation:
•Sent participants their results
•Sent results to the participant's clinician, with their permission
•Referred uninsured participants to a clinician or public health facility, if needed
•Provide additional information, education and support
•Invited participants back to attend a KEEP screening every year.[xxxi]
The professional journals the NKF uses to back up their claims that early testing and detection can slow the progress of kidney disease and prevent people from joining the long line of us that are currently on dialysis and on the waiting list for a kidney are legion.[xxxii] A recent study published in the American Journal of Kidney Diseases found that 59% of Americans will develop kidney disease in their lifetime.[xxxiii] The NKF reacted immediately:
“Nearly six of ten Americans will develop kidney disease in their lifetime, according to a new analysis published in the American Journal of Kidney Disease. In comparison, lifetime risk of diabetes, heart attack and invasive cancer is approximately four in ten.
As a result of this and previous studies, the National Kidney Foundation is calling on healthcare professionals to screen patients in specific high–risk groups for kidney disease – those age 60 or older and those with high blood pressure or diabetes – by adding a simple urine albumin test for kidney damage to annual physical examinations.
“These new data show clearly that Americans are more likely than not to develop kidney disease, which – in its later stages – is physically devastating and financially overwhelming,” said Dr. Beth Piraino, President of the National Kidney Foundation. “Importantly, if caught early, the progression of kidney disease can be slowed with lifestyle changes and medications. This underscores the importance of annual screenings, especially within the at–risk population, to potentially prevent kidney disease and ensure every patient with kidney disease receives optimal care.”
The study, by a team from Johns Hopkins University, combined nationally representative prevalence data on 37,475 individual with kidney disease associated mortality risk data from more than 2 million individuals to create a model detailing lifetime risk. The lifetime risk of moderate kidney disease was 59.1 percent, which translates into 135.8 million people currently alive who will eventually develop moderate kidney disease. For moderate–severe kidney disease, the risk was 33.6 percent, and for severe (stage 4) kidney disease, the lifetime risk was 11.5 percent. Finally, end–stage kidney disease requiring dialysis or kidney transplantation, has a lifetime risk of 3.6 percent which is dramatically higher among African–Americans at 8 percent.
African Americans had a greater risk of developing more advanced disease and developing kidney disease earlier. In contrast, the overall risk was highest in women due to their higher life expectancy and the dramatic rise of kidney disease risk with older age. The authors also noted that kidney disease risk appears to be increasing over the past decades, suggesting their results based on the average risk may be conservative. The rise in obesity and diabetes over the past decades may further increase the lifetime risk of kidney disease.
“With more than half of all Americans at risk, it’s time for all Americans to understand how kidney disease is detected, and for those at elevated risk because of older age, diabetes, hypertension or other risk factors to know whether they have kidney disease or not,” said Dr. Josef Coresh, Professor of Epidemiology, Johns Hopkins Bloomberg School of Public Health, who led the Hopkins team that performed the analysis. “Chronic kidney disease is significantly under–diagnosed, and the consequences of this lack of information can be dire.”
Dr. Morgan Grams, a nephrologist and lead author of the paper pointed out that while severe kidney disease and uncontrolled complications require referral to a nephrologist, the majority of patients with moderately reduced kidney function can be managed well by their regular physician.
Chronic kidney disease is widespread and costly, costing Medicare upwards of $41 billion annually, but awareness and understanding about kidney disease is critically low. An estimated 26 million Americans already have chronic kidney disease, and surprisingly even among those with severe (stage 4) kidney disease fewer than half realize that they have damaged kidneys.
To further assist individuals in understanding their risk of kidney disease, the National Kidney Foundation has developed a simple, interactive online screening test available on its website, kidney.org, and the group encourages those at risk to discuss their results with their health care team to ensure that the proper diagnosis and treatment can be offered.[xxxiv]”
Kidney disease is characterized by a gradual loss of kidney function over time[xxxv]. It increases the risk of complications, including heart disease and premature death[xxxvi]. It is difficult to detect because it mimics other symptoms, including:
•feel more tired and have less energy
•have trouble concentrating
•have a poor appetite
•have trouble sleeping
•have muscle cramping at night
•have swollen feet and ankles
•have puffiness around your eyes, especially in the morning
•have dry, itchy skin
•need to urinate more often, especially at night[xxxvii].
135.8 million Americans have or are expected to have kidney disease in their lifetimes. [xxxviii] Afro-Americans, People over 60, and White Women are particularly at risk.[xxxix] If your family has a history of high blood pressure, a history of kidney failure, if you have diabetes, and/or you are age 60 or above, the NKF is recommending that you have a simple urine and blood albumin test for kidney damage as a part of your annual physical.[xl] Experts now say that 1 in 2 of us could develop chronic kidney disease.[xli] Comparatively, the risk developing diabetes is 1 in 3, heart disease is 1 in 3, and cancer is 1 in 2.[xlii] Tragically, awareness of CKD is unacceptably low. According to the NKF’s experts, only ½ of people with CKD know that they have it.[xliii] Fewer than 50% of the people with severe CKD are aware of it.[xliv]
There is more bad news. The incidence of CKD is on the rise. According to a National Health and Nutrition Examination Survey (NHANES), from 1988-1994 kidney disease rose by 14.5% and from 1999-2004 it rose by 16.85%.[xlv] Most people do not die of kidney failure, but rather there is a high incidence of death resulting from cardiovascular incidents.[xlvi] Another article that I read stated that between 1980 and 2009 the incidence of CKD rose by 600% or from 290 to 1,738 cases per million.[xlvii] According to the American Journal of Kidney Diseases:
“Chronic kidney disease (CKD) is rising in prevalence, increasingly expensive, and associated with a high degree of morbidity and mortality. Reduced estimated glomerular filtration rate (eGFR) is a well-accepted risk factor for all-cause mortality, acute kidney injury, and end-stage renal disease (ESRD), and CKD may carry a coronary heart disease risk similar to that of diabetes. ESRD, the most severe stage of CKD, is associated with a residual life expectancy of less than 5 years. Despite a national education campaign, CKD awareness remains low, and little is known about a given individual's lifetime risk of CKD.[xlviii]”
Early detection of kidney disease is critical to stopping the progression of the disease.[xlix] If you are diagnosed early enough, you kidney disease can be controlled, slowed or delayed with the help of your doctor.[l]The risks of kidney disease and its complication can be reduced by the simple acts of controlling your blood pressure, maintaining proper weight, quitting smoking, exercising, and avoiding excessive pain medication.[li]
I am living proof of this. Prior to me, I lost a cousin, 2 aunts and an uncle to kidney disease. I lost my Dad to Polycystic Kidney Disease. I was diagnosed a mere 2 months after my Father’s death at the age of 25. At the time it came as a blow to me, but it turned out that early diagnosis was a blessing. I hired a nephrologist, took blood pressure meds, ate a renal diet, and I was tested by my doctor every 6 months. I managed to avoid dialysis for over 30 years and my dialysis now has not been as difficult for me as it could have been because I did what I was told years earlier. As I told you in my last blog, recently my son was tested for PKD. The test came back negative. He’s 26. So I do practice what I’m preaching here. This is why I found the study by the ACP so damaging. I think there is more than ample evidence that early detection and testing is critical to peace of mind, good kidney management, and medically acceptable kidney safety. I encourage all of you to seriously to take the very simple tests to detect kidney failure, because early detection and diagnosis leads to early effective treatment. Avoiding dialysis and waiting on the transplant list should be paramount in your thinking. I am grateful to have those alternatives due to my kidney failure, but the life I had before without kidney failure was a better quality of life. Knowledge is power. Get tested. I remain your advocate!
[i] Yard, Nephrology Society Objects to Call Against Kidney Screening, http://www.renalandurologynews.com/nephrology-society-objects-to-call-against-kidney-screening/article/317395/?DCMP=EMC-RENALUROLOGY_ETOC&CPN=&spMailingID=7553773&spUserID=MzE1MTQ0Mzc2NDcS1&spJobID=104488077&spReportId=MTA0NDg4MDc3S0 (October 23, 2013) (“In a statement issued one day after the new ACP clinical guidelines, published by Annals of Internal Medicine, came out against chronic kidney disease (CKD) screening in asymptomatic adults who do not have risk factors, the ASN confirmed that it “strongly recommends” regular screening for kidney disease, regardless of an individual's risk factors.”).
[ii] Id. (“The American Society of Nephrology (ASN) is at odds with the new American College of Physicians (ACP) recommendation against screening for chronic kidney disease in asymptomatic adults without risk factors for the condition.
In a statement issued one day after the new ACP clinical guidelines, published by Annals of Internal Medicine, came out against chronic kidney disease (CKD) screening in asymptomatic adults who do not have risk factors, the ASN confirmed that it “strongly recommends” regular screening for kidney disease, regardless of an individual's risk factors.”).
[v] ASN Emphasizes Need for Early Detection of Kidney Disease, http://www.renalbusiness.com/news/2013/10/asn-emphasizes-need-for-early-detection-of-kidney-disease.aspx (October 23, 2013); ASN disagrees with new guidelines, says adults should be screened for kidney disease, http://www.nephrologynews.com/articles/109817-asn-disagrees-with-new-guidelines-says-adults-should-be-screened-for-kidney-disease (October 23, 2013).
[x] Amir Qaseem, MD, PhD, MHA; Robert H. Hopkins, Jr., MD; Donna E. Sweet, MD; Melissa Starkey, PhD; and Paul Shekelle, MD, PhD, for the Clinical Guidelines Committee of the American College of Physicians, Screening, Monitoring, and Treatment of Stage 1 to 3 Chronic Kidney Disease: A Clinical Practice Guideline From the Clinical Guidelines Committee of the American College of Physicians, http://annals.org/article.aspx?articleid=1757302 (October 22, 2013).
[xi] Flyer distributed to State Advocates by the National Kidney Foundation, www.kidney.org/.../KIDNEY_DISEASE_BY_THE_NUMBERS.pdf (March 2013).
[xx] National Kidney Foundation, Organ Donation and Transplantation Statistics as of June 21, 2013, http://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats.cfm (2013).
[xxi] Flyer distributed to State Advocates by the National Kidney Foundation, www.kidney.org/.../KIDNEY_DISEASE_BY_THE_NUMBERS.pdf (March 2013).
[xxvii] KIDNEY EARLY EVALUATION PROGRAM PUBLICATIONS, http://www.kidney.org/news/keep/ (Accessed 2013).
[xxxii] American Journal of Kidney Disease-KEEP Annual Data Reports, http://www.kidney.org/news/keep/KEEPDataReports.cfm (2013).
[xxxiii] NEW STUDY SHOWS 59 PERCENT OF AMERICANS WILL DEVELOP KIDNEY DISEASE IN THEIR LIFETIME, http://www.kidney.org/news/newsroom/nr/Americans_will_develop_KD_in_their_lifetime.cfm (August 1, 2013); NKF, RPA Urge Screening for those at Risk for Kidney Disease, http://www.renalbusiness.com/news/2013/11/nkf-rpa-urge-screening-for-those-at-risk-for-kidney-disease.aspx (November 4, 2013)(“ “However, screening risk groups is recommended by the NKF and RPA, particularly those with diabetes and/or hypertension. Screening for CKD in these risk groups was shown to be cost effective in a recent analysis,” said Joseph Vassalotti, MD, NKF CFO.
“In addition, NKF and RPA recommend screening for other risk groups to promote early detection and management, including African Americans and at- risk ethnic groups, those age 60 and older and those with family history of kidney failure. CKD detection drives patient awareness and changes management—that is why testing is so important. Control of hypertension can slow progression or loss of kidney function over time, delaying the onset of kidney failure. Management of CKD also includes a patient safety approach to drug prescription practices for certain medications cleared by the kidneys. Avoiding certain medications and judicious use of iodinated contrast media for imaging can prevent acute kidney injury in those at risk with CKD. Lastly, timely nephrology referral and preparation for dialysis and kidney transplantation are dependent on primary care detection,” continued Vassalotti.”); Morales, Understanding The Risks Of Kidney Disease, http://www.pasadenanow.com/main/understanding-the-risks-of-kidney-disease, (Sept 13, 2013)(“ Piraino adds, “if caught early, the progression of kidney disease can be slowed with lifestyle changes and medications. This underscores the importance of annual screenings, especially within the at-risk population, to potentially prevent kidney disease and ensure every patient with kidney disease receives optimal care.”); Infogrpahic, http://www.slideshare.net/KMC127/nkf-infographic-shows-6-in-10-at-ckd-risk (Accessed 2013).
[xxxiv] Id. NKF
, RPA Urge Screening for those at Risk for Kidney Disease
[xxxv] Infogrpahic, http://www.slideshare.net/KMC127/nkf-infographic-shows-6-in-10-at-ckd-risk (Accessed 2013).
[xxxvii] About Chronic Kidney Disease, http://www.kidney.org/kidneydisease/aboutckd.cfm (August 1, 2013).
[xxxviii] Infogrpahic, http://www.slideshare.net/KMC127/nkf-infographic-shows-6-in-10-at-ckd-risk (Accessed 2013).
[xl] Id. See Also; About Chronic Kidney Disease, http://www.kidney.org/kidneydisease/aboutckd.cfm (Accessed 2013)(“ The two main causes of chronic kidney disease are diabetes and high blood pressure, which are responsible for up to two-thirds of the cases. Diabetes happens when your blood sugar is too high, causing damage to many organs in your body, including the kidneys and heart, as well as blood vessels, nerves and eyes. High blood pressure, or hypertension, occurs when the pressure of your blood against the walls of your blood vessels increases. If uncontrolled, or poorly controlled, high blood pressure can be a leading cause of heart attacks, strokes and chronic kidney disease. Also, chronic kidney disease can cause high blood pressure.
Other conditions that affect the kidneys are:
•Glomerulonephritis, a group of diseases that cause inflammation and damage to the kidney's filtering units. These disorders are the third most common type of kidney disease.
•Inherited diseases, such as polycystic kidney disease, which causes large cysts to form in the kidneys and damage the surrounding tissue.
•Malformations that occur as a baby develops in its mother's womb. For example, a narrowing may occur that prevents normal outflow of urine and causes urine to flow back up to the kidney. This causes infections and may damage the kidneys.
•Lupus and other diseases that affect the body's immune system.
•Obstructions caused by problems like kidney stones, tumors or an enlarged prostate gland in men.
•Repeated urinary infections.”);
Video, What is the Lifetime Risk for Developing Kidney Disease? http://www.youtube.com/watch?v=4ZN8nuKcQpo (Accessed 2013); Video, Experts Discuss New Report on Lifetime Risk for Kidney Disease and NKF's Screening Recommendations, http://www.youtube.com/watch?v=p6Nq_D4j3JI (Accessed 2013).
[xli] Video, Experts Discuss New Report on Lifetime Risk for Kidney Disease and NKF's Screening Recommendations, http://www.youtube.com/watch?v=p6Nq_D4j3JI (Accessed 2013).
[xliv] Infogrpahic, http://www.slideshare.net/KMC127/nkf-infographic-shows-6-in-10-at-ckd-risk (Accessed 2013).
[xlv] www.kidney.org/news/keep/pdf/adr2007/02chapter1.pdf (Accessed 2013); American Journal of Kidney Diseases, Vol 51, No 4, Suppl 2 (April), 2008: pp S3-S12; Centers for Disease Control and Prevention of Chronic Kidney Disease and Associated Risk Factors-United States, 1999-2004, MMWR Morbid Mortal Weekly Rep 56: 161-165 (2007).
View shared post
[xlvii] http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/#7 (2012)
[xlviii] Grams, Lifetime Incidence of CKD Stages 3-5 in the United States, American Journal of Kidney Diseases
Volume 62, Issue 2 , Pages 245-252, August 2013, http://www.ajkd.org/article/S0272-6386(13)00664-1/fulltext (2013).
[li] Id. Infogrpahic, http://www.slideshare.net/KMC127/nkf-infographic-shows-6-in-10-at-ckd-risk (Accessed 2013).
GIVING TUESDAY: WHAT CAN WE AS DIALYSIS PATIENTS GIVE?
On the website for the Polycystic Kidney Foundation, there is an announcement about Giving Tuesday, December 3rd, 2013. http://www.pkdcure.org/giving-tuesday. It says you can give one of three ways: your voice, your time or your dollars. As a dialysis patient, I don’t know about you, but I don’t have any money. But 2 things that I have a lot of are voice and time, and I am more than happy to lend those to the cause of defeating PKD. I can honestly say that having an invisible fatal illness has colored every decision that I have ever made since I was diagnosed over 40 years ago. In my family, I have lost a cousin, 2 aunts, and an uncle to PKD. I lost my father to PKD. He spend the last month of his life in the hospital until he slowly expired of congestive heart failure and renal poisoning all triggered by PKD. 2 months after his death, I was diagnosed. I was 25, my future laid out for me; kidney failure, dialysis and death. Not pretty. Most people don’t know how they will die; I had a pretty good idea. The psychological aspects of this disease are under addressed. It has a way of making you feel very alone if you let it.
PKD is a genetic or inherited disease.[i] It most commonly occurs in adults, but there is a version of PKD that affects only children. [ii] It affects both kidneys. In PKD, cysts, or fluid-filled pouches, are found primarily in the kidney but they can also affect other organs, including the liver, pancreas, spleen and ovary. Outpunching may occur in the walls of the large intestine and in the walls of blood vessels in the brain, where they may cause aneurysms. They may also be found in the abdominal wall, causing hernias. In addition, the valves of the heart may be involved, becoming floppy and resulting in a heart murmur in some patients.[iii]
There are some startling statistics that accompany PKD. PKD is the most common life-threatening genetic disease on the planet, affecting more than 600,000 Americans and an estimated 12.5 million people worldwide. PKD is twice as common as multiple sclerosis and 20 times more common than cystic fibrosis. PKD is the fourth leading cause of kidney failure.[iv] More than 50% of people with PKD will develop kidney failure by the age of 50, with dialysis or transplantation as their only options.[v] It is estimated that one in 500 people have the dominant form of PKD (Autosomal Dominant PKD or ADPKD).[vi] The sad truth of this number is that it may be much higher, as people who have the disease choose to remain undiagnosed due to concerns about losing their health/life insurance or employment.[vii] It is found in all races and occurs equally in men and women.[viii] This includes newborns, children and adults. PKD is one of the most common life-threatening genetic diseases, affecting more people than Down syndrome, cystic fibrosis, muscular dystrophy, hemophilia, and sickle cell anemia – COMBINED![ix] There is no treatment for PKD. And no cure. Until one is found, PKD will threaten the lives of every generation of every family living with the disease.[x]
PKD equally affects men, women and children – regardless of age, race, geography or ethnic origin. It does not skip a generation.[xi]
Likewise surprising is who is at risk for developing PKD? The adult type of PKD (also called autosomal dominant PKD or ADPKD) is passed from parent to child by an autosomal dominant type of inheritance. This means that only one copy of the abnormal gene is needed to cause the disease. Therefore, if one parent has the disease, each child has a 50-50 chance of developing the disease. The risk is the same for every child, regardless of how many children develop the disease. Boys and girls have the same chance of inheriting the disease.[xii]
The less common form of PKD (also called autosomal recessive PKD or ARPKD) is passed by an autosomal recessive pattern of inheritance. This means that both parents must carry the abnormal gene, and both must pass the gene to the child in order for the child to develop the disease. In this situation, every child has a 25 percent chance of developing the disease in a family that is at risk.[xiii]
The other thing you must know about PKD is that it is very difficult to diagnose because it mimics other diseases and symptoms. It has a very slow, gradual onset. People who have inherited ADPKD often do not notice anything unusual until they are 30 to 40 years old.[xiv] The first noticeable symptoms may include:
❖ high blood pressure ❖ back or side pain ❖ an increase in the size of the abdomen due to enlarged kidneys ❖ blood in the urine ❖ frequent bladder or kidney infections, kidney stones[xv]
High blood pressure is the most important treatable risk factor in PKD. Occasionally, patients may develop headaches related to high blood pressure or their doctors may detect high blood pressure during a routine physical exam. Finally, about 25 percent of PKD patients have a floppy heart valve, and some of these develop a fluttering or pounding in the chest as well as chest pain. These symptoms almost always disappear on their own but may be the first hint that someone has PKD.[xvi]
The methods to diagnose PKD are tricky. Today, ultrasound is the most reliable, inexpensive and non-invasive way to diagnose PKD.[xvii] Someone at risk for PKD who is older than 30 and has a normal ultrasound of the kidneys probably does not have PKD.[xviii] Occasionally, a CT scan (computed tomography scan) may detect smaller cysts that cannot be found by an ultrasound.[xix]
At present, PKD cannot be diagnosed by a single blood test. [xx]However, in some situations where it is important to have a diagnosis (for example, if a family member wants to donate a kidney to an affected parent or sibling, and ultrasound and CT scans are normal), special blood tests on at least three family members can be done to get a diagnosis in the at-risk individual. This form of testing is called gene linkage analysis.[xxi]
What are the effects to your kidneys if you develop PKD? The PKD Foundation describes it as devastating.[xxii] Those who inherit PKD develop fluid-filled cysts in both kidneys. Over time, these cysts grow and multiply, causing the kidney to increase sometimes dramatically in size. Although a normal kidney is roughly the size of a human fist, PKD kidneys can grow to be the size of a football or larger and weigh as much as 38 pounds each.[xxiii] Pain in the area of the kidneys can be caused by cyst infection, bleeding into cysts, kidney stone, or stretching of the fibrous tissue around the kidney with cyst growth. A doctor will first evaluate which of these causes are contributing to the pain to guide treatment. If it is determined to be chronic pain due to cyst expansion, the doctor may initially suggest over-the-counter pain medications, such as aspirin or acetaminophen (Tylenol). Consult your doctor before taking any over-the-counter medication because some may be harmful to the kidneys, especially those containing Ibuprofen. For most but not all cases of severe pain due to cyst expansion, surgery to shrink cysts can relieve pain in the back and sides. However, surgery provides only temporary relief and does not slow the disease's progression toward kidney failure.[xxiv] I have had a few of my friends on dialysis that had kidneys removed altogether. The bottom line here is that PKD is a painful disease that has a definite impact on the quality of your life.[xxv]
Parents have a 50% chance of passing the disease to each of their children. Unlike other genetic diseases, it does not skip a generation. Because it is passed from one generation to the next, PKD often affects many people in one family. [xxvi]
PKD is particularly insidious as 10% of the people diagnosed with PKD have no family history of the disease, because PKD has developed as a spontaneous, new mutation. However, once you have it, you have a 50% chance of passing it along to your children.[xxvii]
THERE IS NO TREATMENT OR CURE FOR PKD.
It is particularly heart-breaking, but PKD affects children, including newborns and infants. Autosomal recessive polycystic kidney disease (ARPKD) affects 1 in 20,000 children. Unfortunately, it all too frequently causes death in the first month of life.[xxviii] For the ARPKD children that survive the newborn period, 70% or 1/3 will need dialysis by the age of 10.[xxix]There is some good news. The prognosis for ARPKD children has improved recently. Only a short 20 years ago only half of the children born with the disease survived to their 10th birthday. Remarkably, this percentage has increased to 85%.[xxx]
Not everyone with PKD develops kidney failure. I know this is true because I was able to put off dialysis for nearly 40 years! About 50 percent of patients with PKD will have kidney failure by age 60, and about 60 percent will have kidney failure by age 70.[xxxi] Certain people have an increased risk of kidney failure. They include:
❖ men ❖ patients with the most common form of PKD (ADPKD) ❖ patients with high blood pressure ❖ patients with protein or blood in their urine ❖ women with high blood pressure who have had more than three pregnancies. [xxxii]
The treatment of PKD is very subtle. There are some simple things that can be done to slow down or prevent the loss of kidney function. They include:
Careful control of blood pressure ❖ prompt treatment of any bladder or kidney infections ❖ lots of fluid and bed rest when blood in the urine is first noted ❖ a healthy lifestyle with regard to smoking, exercise, weight control, control of red meat and salt intake.[xxxiii]
PKD is expensive. According to the PKD Foundation, PKD cost the federal government in excess of $2 Billion annually through Medicare and Medicaid costs for dialysis, transplantation, and related treatments.[xxxiv]
Speaking of treatment, I followed with a nephrologist (kidney doctor) every 6 months, I took high blood pressure meds, had my urine and blood tested, limited the amount of red meat I ate, ate things like fish & chicken, more vegetables and fruit, tried to get adequate rest, and reduced stress in my life to the extent that I could. I think these things helped me as I really do not have other life-threatening health issues other than my kidneys. The National Kidney Foundation recommends a low protein diet, reduction of salt in the diet to help control blood pressure and a diet low in fat and moderate in calories to maintain a healthy weight. [xxxv] Non-contact exercise is also recommended.[xxxvi]
I confess to you that when my kidneys failed and I was put on dialysis, I was very angry. I definitely did not want to be there. I lost my job as a college professor and several friends disappeared. My worst fears had come true. But after I was at the clinic for a while, I began to realize this was not my Dad’s dialysis and I was well-cared for and closely looked after. I also began to realize that I was a lot more fortunate than many of my clinic mates. Most of them were diagnosed very late in life; I had the benefit of an early diagnosis and excellent care by great doctors. 5 people in my clinic are over the age of 90. Many come in and leave by ambulance, are in a wheelchair, walk with a cane or walker, are afflicted with diabetes on top of kidney failure, some have amputations. Some of my friends have passed in the 2 short years I have been here.
It occurred to me, who looks out for these people, who fights for them, who represents their interests? I became a kidney advocate. I applied and was accepted as an Advocate and Ambassador by the National Kidney Foundation, the Dialysis Patient Citizens, and the Polycystic Kidney Disease Foundation. I could put my talents as a lawyer and college professor to good use. I’ve been to Washington DC twice last year to talk to my Congressman and 2 Senators. They trained me. I’ve met with my local representatives too. I have given talks locally, been interviewed by the local press, and had videos made while taking dialysis. I started an online petition protesting the cuts to Medicare Dialysis patients. I have an online presence on Facebook and Twitter that I call Kidney Stories[xxxvii] where I share other people’s kidney stories to help them find a donor for transplant purposes. While I am waiting for my own transplant, I try to help others. It is a very rewarding way to spend my time.
The PKD Foundation is like that too. Their legislative agenda for 2013 needs to be discussed on Giving Tuesday because so many people give their time and talents to advocate for others afflicted with PKD. I like the fact that we fight back. The advocacy in my life has given it meaning and purpose. I am glad to be a small part of that.
I am very proud to be a part of these efforts. It is all that I have to give on Giving Tuesday, but I do so gladly and I am thankful because it gives my life as a dialysis patient purpose. The mission of the PKD Foundation is to promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for polycystic kidney disease and to improve the lives of all it affects. Their vision is that one day, no one will suffer the full effects of polycystic kidney disease. On Giving Tuesday, I am happy to be a small part of that. The idea that someday no one will have to suffer the ill effects of PKD brings joy to my heart. If you are able, please donate to the PKD Foundation, give your time, and lend them your voice. Sign a donor card. Share your spare! Go to walk, attend an event, advocate for that organ donation cause that is your passion. Give the greatest gift of all; the Gift of Life.
One final note. Over Thanksgiving my son was home from Phoenix to see his old dad. For years I have worried that I had passed the disease along to him. I had a tremendous amount of unexpressed guilt. He was tested before he left Arizona. The tests came out negative. Happy Giving Tuesday. I remain your advocate!
[i][i][i][i] National Kidney Foundation online brochure, Polycystic Kidney Disease, www.kidney.org/atoz/pdf/polycystic.pdf (Accessed 2013).
[iv] PKD Foundation Flyer, About Polycystic Kidney Disease (2013)
[ix] Devastating Effects, PKD Facts: What Everyone Needs to Know (flyer from the PKD Foundation)(Accessed 2013).
[xii] National Kidney Foundation online brochure, Polycystic Kidney Disease, www.kidney.org/atoz/pdf/polycystic.pdf (Accessed 2013).
[xxii] Devastating Effects, PKD Facts: What Everyone Needs to Know (flyer from the PKD Foundation)(Accessed 2013).
[xxiv] Polycystic Kidney Disease, http://kidney.niddk.nih.gov/kudiseases/pubs/polycystic/ (Accessed 2013).
[xxv] Flyer from the PKD Foundation, About Polycystic Kidney Disease (2013).
[xxxi] National Kidney Foundation online brochure, Polycystic Kidney Disease, www.kidney.org/atoz/pdf/polycystic.pdf (Accessed 2013).
[xxxiv] Fact Sheet, Polycystic Kidney Disease (PKD) information gleaned from the National Institute of Health (Accessed in 2013).
[xxxviii] PKD Foundation Flyer, 2013 Legislative Priorities (2013).