From U.S. House of Representatives, Energy and Commerce Committee
Letters to Congress, Public Responses for 21st Century Cures
As the mother of a child suffering from PKD, a disease for which there is no cure, I urge you to seek a
path to a treatment. At present, she has kidney failure , dialysis and kidney transplant as her only hope for
survival. It is imperative that research be done to discover a viable alternative to transplantation.
As I understand, The House Energy and Commerce Committee has launched the 21st Century Cures initiative to draw attention to and close the glaring gap between the number of diseases and the number of treatments available. We would like to share our experience with you concerning Polycystic kidney disease. Our son, who is the light of our life, was adopted at the age of 4 mos. At age 23, he was diagnosed with
PKD. We have been devastated ever since. Our faith is what keeps us going. We pray daily for a cure.
As you may already know, Polycystic kidney disease (PKD) is a genetic disorder characterized by the growth of numerous cysts in the kidneys. The kidneys are two organs, each about the size of a fist, located in the upper part of a person's abdomen, toward the back. The kidneys filter wastes and extra fluid from the blood to form urine. They also regulate amounts of certain vital substances in the body. When cysts form in the kidneys, they are filled with fluid. PKD cysts can profoundly enlarge the kidneys while replacing much of the normal structure, resulting in reduced kidney function and leading to kidney failure.There is currently no treatment to slow or stop the growth of the kidney cysts that plague generations of families suffering from
polycystic kidney disease (PKD). PKD patients only remedies are dialysis and transplantation once their kidneys fail.
We implore you to help Congress move the ball forward and to give my son, and us, back our lives! We would be eternally grateful!
We need a cure or even a treatment for Polycystic Kidney Disease. (PKD).
I was diagnosed with PKD in June 1998. I was placed on a kidney transplant list in March 2011. I started dialysis in January 2013. I am 78 years old.
The cure is too late for me but I have three sons and one daughter with ages in their early 50s. All have polycystic kidney disease. They need the cure.
Dialysis keeps me alive but greatly limits travel and other activities. Dialysis and kidney transplant are costly primarily to the government. A cure or even treatments that slow disease progression would save a great deal of taxpayer and patient money. Patients could continue 100% productivity.
We need a cure for Polycystic Kidney Disease. (PKD).
[Read more]
Kidney Donation Economics
From Time Warner Cable News, Buffalo, NY, By: Katie Cummings
WEST SENECA, N.Y.--When Vincent Graber and his wife Michelle met 31 years ago, he knew she had a pre-existing condition that might some day require a kidney transplant.
"Of course I was hoping all along that the polycystic kidney disease would not be that bad with her and she would never need a kidney. But in the event she did need a kidney, it was always my hope that I would not only qualify but that I indeed would be the donor, because she means everything to me," said West Seneca resident Vincent Graber Jr.
But when that time came, Graber was rejected due to a blood pressure pill he was taking.
"I was actually rendered to tears in the office when they first told me that I would not qualify," said Graber,"I started on a very extensive exercise program. I started doing a lot of research to what are some of the things causing my high blood pressure."
He was rejected five times from donating. Finally he was able to help his wife, and they performed surgery on both of them June 26.
"Not only did I save my wife’s life, I’m sure I’ve extended my own life. So I was able to save two lives," said Graber.
The waiting list for people to receive a kidney could take years, according to the Northeast Kidney Foundation of Greater Buffalo.
"You’ve got two. God gave us two so we say share the spare. It’s such a wonderful thing to do for somebody because not only are you keeping them off dialysis, taking them off dialysis and even saving their lives," said foundation member Barbara Breckenridge
During his experience, Graber realized the process was not realistic for the working public.
"If you're the main bread winner for a family or the only bread winner for a family and you want to give your organ even to a friend, and then you find out the only thing you’re going to get is new York state disability, which is significantly lower than your full time pay and actually could receive no benefits," said Graber.
He's proposed an organ donor leave act to have employers compensate donors with wages and benefits. Vincent is waiting to hear back from state and congressional leaders. [Read more]
From The New York Times, Opinion: Alexander M. Capron, University Professor at the University of Southern California, was the director of ethics, trade, human rights and health law at the World Health Organization. Francis L. Delmonico, professor of surgery at the Harvard Medical School, is the immediate past president of The Transplantation Society.
Removing disincentives and obstacles to organ donation, rather than eliminating the federal ban on payment to donors, would be something the entire community could support.
First, to reduce the number of patients who die while waiting for a kidney transplant, the recipient’s insurance or Medicare should cover the costs that deter people from becoming donors. This would increase the supply of living kidney donors without creating a market for their organs.
These expenses include the costs of being evaluated as a potential donor, and of transportation, dependent care and lost wages during the period from predonation screening to postoperative recovery. Insurance against the risks of donation should also be provided. Medical complications may not be covered by each donor's health insurance. The death of a donor without life insurance would be a disaster for a family that has lost its source of financial support.
This cost coverage would ultimately reduce the cost to health insurance companies and the federal government because enabling patients to undergo kidney transplantation would not only extend and improve their lives but also save the cost of dialysis.
A second change would be to remove the three-year limitation on Medicare coverage of the immunosuppressive medications that are essential to prevent organ rejection. That shortsighted policy results in hundreds of patients losing their transplanted kidneys every year, forcing them to return to dialysis while they await another transplant.
A third step would be to increase the supply of organs from deceased donors by efficiently using donor consent registries throughout the country, and by recovering and transplanting more kidneys from donors after circulatory death. Additionally, about 500 kidneys are recovered from deceased donors each year in the United States and discarded even though they are medically suitable for transplantation.
Three decades of experience around the world has shown that if human organs become commodities they will always be obtained from the poorest and most vulnerable in society. The consequences of such a market-driven program are now being rejected even by colleagues in Iran, which up to now has been the only country that enabled organ sales.
Rather than proposing plans for buying kidneys, let's use our collective ingenuity to devise policies that respect voluntary living donors and the families of deceased donors for their generous solidarity with patients in need.
PKD Research
From Renal and Urology News, by Jody A. Charnow, Editor
Kidney Failure From Polycystic Disease Linked to Better Outcomes
Patients with end-stage renal disease (ESRD) due to autosomal dominant polycystic kidney disease (ADPKD) are more likely than patients with ESRD from other causes to be wait-listed for and to undergo renal transplantation, according to a new study. They also are less likely to die.
Investigators with the U.S. Renal Data System (USRDS), Minneapolis Medical Research Foundation, led by Robert N. Foley, MB, retrospectively analyzed USRDS data from 1,069,343 patients who initiated renal replacement therapy (RRT) from 2001 through 2010. Of these, 23,772 patients had ADPKD as the primary cause of their ESRD and 1,045,571 had a non-ADPKD cause of ESRD. Patients with and without ADPKD were matched according to age, sex, race, and ethnicity to compare clinical outcomes.
During 4.9 years of follow-up, the incidence rate for being listed for kidney transplantation was significantly higher for the ADPKD than the non-ADPKD group (11.7 vs. 8.4 per 100 person-years), as was the incidence rate for receiving a transplant (9.8 vs. 4.8 per 100 person-years), Dr. Foley and colleagues reported online ahead of print in the American Journal of Kidney Diseases. The incidence rate for death was significantly lower for the ADPKD patients (5.6 vs. 15.5 per 100 person-years).
The study also showed that 48% of the ADPKD patients received more than 12 months of nephrology care prior to RRT. “Considering that that ADPKD is a kidney disease for which early detection and access to specialized care should exceed most other types of kidney disease, it was disappointing that less than half the study population had received more than a year of nephrology care before initiating RRT,” the authors wrote.
The investigators observed that ADPKD differs from most other causes of ESRD because it can be detected early in life. “Hence, it has the potential to illuminate issues such as non–disease-specific interventions to prevent ESRD and patterns of nephrology care in late-stage chronic kidney disease.”
Kidney Disease
From Enid News, Enid, Oklahoma, by Judy Rupp
An increasing number of Americans, including children and adolescents, are overweight or obese. And obesity has been linked to an increased risk of kidney disease. Diabetes, another risk factor for kidney disease, is also increasing. Finally, the serious effects of kidney disease are more likely to occur with advancing age. And the percentage of older Americans in the population is also increasing.
Chronic kidney disease (CKD) usually develops gradually over a number of years, and the symptoms may go unnoticed until the final stages. But when kidney failure strikes, there is no going back. Without dialysis or a kidney transplant, the patient will likely die.
The kidneys have the task of removing waste and excess fluids from the blood; maintaining a proper balance of salt, potassium and other minerals; and regulating blood pressure. They also produce erythropoietin, which stimulates the production of red blood cells and an active form of vitamin D that is necessary for healthy bones.
Acute or sudden damage to the kidneys can occur because of a traumatic injury, a severe infection, damage from certain drugs or toxins, complications of pregnancy or severe dehydration such as that sometimes suffered by marathon runners. Although they can be serious, these short-term problems are usually detected early enough for successful treatment.
Chronic kidney disease, by definition, lasts longer than three months and can be more dangerous because symptoms may not occur or be noticed until irreparable damage has occurred.
More than 60 percent of CKD cases are caused by diabetes (both types 1 and 2) and/or high blood pressure. The tiny blood vessels in the kidneys become damaged by excess blood sugar or by the extra pressure of poorly controlled blood pressure.
Other causes of CKD include glomerulonephritis (an inflammation of the filtering system of the kidneys), urinary tract infections; kidney stones; an enlarged prostate gland, congenital defects, polycystic kidney disease and disorders such as lupus that affect the immune system. Overuse or misuse of NSAIDs such as ibuprofen or naproxen can lead to chronic kidney disease.
Symptoms include swollen feet or ankles caused by excess fluid; puffiness around the eyes; dry, itchy skin and a need to urinate more frequently, particularly at night.
One way to know about the health of your kidneys is to keep an eye on your blood pressure. Not only is hypertension a major cause of kidney disease, it is also an effect. When the kidneys are not filtering properly, blood doesn’t flow freely through the tiny blood vessels, and the result is elevated blood pressure. [Read more]
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