ESRD Stats in Focus:Prevalence, Annual Number of Kidney Transplants, Costs Per Patient, and Patient Survival Rates

ESRD Prevalence and Prevalent Rate

• At the end of 2009, more than 871,000 people were being treated for ESRD.
• Between 1980 and 2009, the prevalent rate for ESRD increased nearly 600 percent, from 290 to 1,738 cases per million.

Kidney Transplantation

After rising steadily from 1980 to 2006, the annual number of kidney transplants declined in 2007 and 2008.

Costs per Patient

• ESRD annual expenditures per patient have increased slightly in recent years.
• From 2006 to 2007, transplant costs per patient decreased but increased again in 2008.
• Yearly costs for treating a patient on HD are nearly triple the costs for treating a transplant patient.

Patient Survival Rates for Dialysis and Transplant Patients

At 85.5 percent, the 5-year survival rate for transplant patients is more than twice the 35.8 percent survival rate for dialysis patients.











Special thanks to the

National Kidney and Urologic Diseases
Information Clearinghouse (NKUDIC)

and the

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

 for the graphs which were taken from

http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/

 on 8/16/12.

Random Thoughts on Innovation: Application to Healthcare: Inspiration Based on the Life of Rav Chaim Brisker: Post from Toronto's Pearson Int'l Airport

I often feel a bit let down when people accept the status quo or the orthodoxy of any given field. Each and every thinking person should analyze for themselves if things are being done in the best possible manner to induce the best possible results. Humans are inherently imperfect so obviously the actions which humans take are merely reflections of themselves and are thus sometimes going to be imperfect.
I want to now depart from a direct discussion about healthcare for a moment to bring out an idea about a philosophy about life (to which I zealously subscribe).
I have had the very lucky merit to have been a student of Rabbi Ahron Soloveichik before he passed away and continue to merit to be a student of his son Rav Moshe Soloveichik. Many people have fine teachers, mentors, clergy, and leaders. What is so special about these two giants among men? They continue in the glorious path of their illustrious progenitor Rav Chaim Soloveichik who was the Chief Rabbi of  Brisk in Lithuania. So what was so unique about Rav Chaim?
When a person analyzes any problem, they can be overwhelmed by the apparent challenges, contradictions, and roadblocks presented by the obstacle and they can be overwhelmed and become dispirited and give up on attempting to solve the given challenge...or, even worse, a person may not even attempt to solve the problem. They can become slaves to the status quo.
 Rav Chaim brought to the world of Torah scholarship in particular, (as well as to the world of acts of chesed or loving kindness more generally) a new brazen weltanschauung that every problem can be solved with a deep analysis of the given texts of Talmud or passages of Maimonides (or social ills) and therefore harmony can be created from apparent contradiction and chaos. He rejected the status quo and strove to attempt to mold the world into a more perfect state (by decreasing the number of apparent contradictions which exist) by being the innovator par excellance.
 Rav Chaim applied his innovative approach to the sphere of acts of loving kindness as well. One such example is from well known occurrences in Brisk where Jewish and even non-Jewish young mothers who had their children out of wedlock would drop their babies at Rav Chaim's doorstep at all hours of the night and that he would arrange for the best care for these babies and he would continue to look after them until they were married off.
Rav Chaim didn't see problems. He didn't see challenges. Instead of focusing on the problems and challenges of every social situation or Rabbinic textual difficulty, Rav Chaim would focus on the solution to the problem. Now, Rav Chaim wasn't naive. With his great and legendary power of incisive analysis, he understood how difficult it would be to raise children born out of wedlock (especially in those days when there was certainly a much stronger stigma attached to these children). He understood that there had been apparent contradictions in Maimonides that scholars had struggled to understand for 800 years.
But Rav Chaim understood that to solve problems you cannot be constrained by the past, by social pressure, or by the accepted norms of the intelligentsia of the era. In fact, when Rav Chaim was innovating his new approach of textual analysis, he was often scorned and derided by the "old-guard" of Rabbinic leadership who derided him as "the chemist." Basically, Rav Chaim applied the logic of the scientific method to Torah learning. If you have two phenomenon with apparently the same inputs but you obtain two different outputs, logic told Rav Chaim that obviously you don't have the same inputs as you originally thought. So Rav Chaim labored to analyze, and, if he was successful, he was able to detect the differences between the two inputs.  While it might have appeared at first glance that the 2 cases had the same inputs, Rav Chaim with the precision akin to that of the precision needed by a neurosurgeon, was able to realize the differences and answer the apparent contradictions. If 2 given passages of Maimonides or Talmud contradicted themselves, or if Maimonides apparently contradicted the Talmud (which is theoretically impossible because Maimonides codified and organized the various halahkhic (AKA Jewish Law) holdings and precedents of the Talmud), Rav Chaim would read the texts extraordinarily closely to discern which passage had an extra phrase or was missing a certain passage to harmonize the apparent contradictions.
 Rav Chaim saw that which everyone thought wasn't there. It took tremendous fortitude to change the style of Torah learning. Rav Chaim innovated. He applied the logic of the scientific method to Torah study. Rav Chaim had such a strong belief in the inherent harmony of the Torah,the Talmud, and of Maimonides'es writings, that he was able to "solve" contradictions that had been unexplained or poorly explained for around 1400 years from when the Talmud was finished being organized.

Implications for healthcare policy:
 Constant experimentation, questioning of "accepting truths", insistence on comparative effectiveness research not just for the entire populations but for as many unique sub-populations as possible, which interventions lead to actual provable increased life expectancy and quality of life, etc.
Don't forget, surgeons though until not very long ago (~70 years) that a heart should never be cut into....the dictum of "don't touch the heart." There was nothing wrong with this approach...this was true for the level of medical technology and progress that existed at that time. But it wasn't an immutable law. It was an accepted norm based on the reality at that time. Times change. Innovation spreads. Medical progress marches on. Alfred Blalock and Vivien Thomas at Johns Hopkins dared to think differently about the dictum of "don't touch the heart." Since then, millions of heart procedures have been done in the world saving countless lives of humans of every age, creed, and color.
There are always manners to improve the world in general and the healthcare environment (both the clinical and financial aspects) in particular. Do we accept the imperfect status quo or do we strive to innovate and improve the healthcare environment? The legendary example of Rav Chaim Brisker instructs us how to proceed.
To be continued...

Main Principles of Increasing ESRD Life Expectancy, In Formation

 Theses are some ways to increase life expectancy in people with ESRD:
In no specific order...
1. Increase AV fistula use.
2. More frequent hemodialysis 
3. Increase pool of organs available for transplantation
a. Expand usage of expanded criteria donor (ECD) organs. Many kidneys currently not being used for transplantation may not be ideal but they will increase ESRD patients life expectancies compared to remaining on dialysis so it is a no brainer from a humanistic perspective or from a utilitarian perspective or from a rational decision making model based on probability. So why are so many kidneys being thrown away?
b. increase live donor pool
         i. increase live donation from family and community
         ii. incentivizing live donors with monetary and other means (repeal parts of the killer legislation AKA National Organ Transplant Act.) I don't like complimenting Iran, but they have a real functioning  market for kidney sales where buyers and sellers can transact business and a kidney can be bought and sold for a government mandated price of approximately $2,000 (as of a few years ago that was the price.)
4. Medicare should cover anti-rejection meds for life after transplantation. This will elongate the survival of the transplanted graft which will keep people healthier and alive. Currently, anti-rejection meds are only covered for 3 years after transplantation so if a person cannot afford the anti-rejection meds, some transplant centers won't even allow the person to receive the transplant! In some other circumstances, the person undergoes transplantation, then after they can no longer afford the meds, their bodies eventually reject the graft and then the person ends back on dialysis and Medicare will pay for that for life.....which is much more expensive and is only a treatment and not a cure which the transplanted kidneys (actually) are for as long as they do continue to function.
        To be continued...

Outrageous Care and Incompetence at the VA (Veterans Administration) Outpatient Clinic

I don't intent to appear to be picking on the VA's medical care but I really can't help myself at this point from writing about (against) a medical system that is in need of a complete rebuilding...not just some improvements at the margins. I have seen good and bad at the VA during the last 5 years but recently I have witnessed or been told about such egregious occurrences that I feel the need to dedicate another post to the VA. See last week's article here. 
For the past month or so, my friend's father, who just turned 90, has been declining precipitously. His father used to go the health club at least 3 times a week and the last month he was completely lethargic and only wanted to stay home. My friend told me last Saturday that his father was entering a new and difficult health stage and I told him although it is possible to quickly decline, I tended to doubt that there wasn't an underlying cause to his decline. I told my friend to have his father checked out for a urinary tract infection (UTI) (or other possible infections) because I remembered that his father had become lethargic a few previous times and it ended up he had UTI's.  He told me that he doesn't need to have his father checked out because he had brought  his father to the VA to see his physician on June 22, 2012. I told him that he better check it out anyways because the infection could have come right after the lab work was done or that the VA is incompetent and they forgot to let him know that there is a problem.
My friend contacted his dad's non-VA physician who took a urine specimen. Low and behold, it showed that his father has a UTI and he is now on an antibiotic and his energy level is beginning to rebound.
Then, this afternoon, his father's VA doctor called with results from the June 22 appointment (4 weeks ago) and the doctor tells him that his father had a UTI. My friend told the doctor that he already knows about it and his father is being treated. This specific healthcare provider at the VA is extraordinarily negligent. But is this incident an anomaly at the VA or a pattern...I am beginning to think it is a pattern. My friend's father suffered needlessly for an extra 3 and a 1/2 weeks.
People love throwing around buzzwords relating to healthcare like Accountable Care Organizations (ACO's) and continuity of care.
 President Obama, you already control the VA Medical System. Is this system to be revered and glorified? Practice what you preach. Add real accountability into your healthcare organization, not just some joke government plan which makes it look like there is accountability while veterans are being treated with negligence and an overall lackadaisical attitude.
If not, maybe the government should look into closing VA medical centers and allowing veterans to go to the healthcare provider of their choosing by issuing them Medicare type cards which will allow healthcare providers to be reimbursed for treating veterans similar to the manner in which they are reimbursed for seeing senior citizens.

Physician's Dilemna: Pro-active Patient Management or Reactive Treatment Only

In my last post, I discussed some of Mr. G's experiences with the VA. See here.
Mr. G's main problem was that he had stopped taking his medications. FYI, Mr. G gets his medications shipped to him from the VA for only a few dollars per prescription. The VA has an EMR (electronic medical record) of when the last time he reordered his prescriptions. His GP was able to see he had not reordered his prescriptions for some time. (When I went into his apartment to do an intervention in ~February 2012, he had a prescription which had expired in 2008! Needless to say, I threw out all of his expired meds and had to schlep to the West Side VA Hospital to pick up all of his meds so that he would begin his blood pressure meds immediately. Reminder, his blood pressure was ~200/130.)

Medical adherence/medical compliance (meaning does the patient follow the physician's advice)  is a field where a lot of important research needs to be done to determine how to enable patients to better follow their physician's advice so that hopefully they will be able to lead healthier and longer lives. Once more is understood about the interaction between the physician and the patient, and how the physicians can best convey the information to different types of patients (i.e. visual learners vs. audatory learners vs. kinesthetic learners),best practices in the field of doctor patient communication could hopefully be quickly diffused throughout the medical profession. On the most basic level, an after visit summary is a piece of paper which tells the patient what happened to them and what are they supposed to do when they go home. I assume this increases medical adherence to a certain extent.

But back to Mr G. The VA's EMR system showed that it had been a really, really long time since Mr. G had reordered his medications. Does the VA's EMR system have built in alerts to let his GP know that Mr. G is overdue in ordering his meds? Does Mr. G's GP notice while he examines Mr. G and looks at the computer that he has not reordered his meds? Or is it completely the patients responsibility to reorder his meds and the physician should take a laissez-faire approach to whether their patients are ordering their meds? Or does it depend on the sophistication of the patient...meaning that regarding a patient who is of sound mind the doc should take a hands-off approach towards medical adherence but regarding an elderly patient with the beginnings of dementia, the doc should take a proactive approach in assuring the patient's medical adherence.

Finally, since shortly after Mr. G's sky high blood pressure incident, the VA sends a nurse once or twice a week to lay out his pills in a pill container and check to make sure all of the boxes are empty (so that it can be assumed he actually took the meds and didn't discard them in some other manner.) Also, she takes his blood pressure to ascertain whether his bp is in check so that it can be assumed with more evidence to back it up that he really has swallowed his pills. (Personally, I benefit from this practice because the first few weeks after the incident I needed to lay out his pills and go upstairs to his apartment every day to make sure he really took his meds. Now, Kate, the nurse does everything.)
It is possible the VA will eventually stop sending the nurse at some point (to save money) like it stopped sending the therapist at a certain point.
 I think an interesting study the VA can do is to enroll patients in automatic prescription ordering (like Walgreens has) so that their patients always have their meds and determine if this increases those patients medical adherence to taking their meds. Another study the VA can do is whether sending the patients meds already laid out in the weekly pill containers will improve medical adherence because I can attest to the fact that Mr. G cannot lay out his pills correctly so even of the VA would automatically send the meds, I doubt he would end up taking them correctly.

Healthcare Rationing: 3 Months for a Pair of Glasses at the VA? Implications for Obamacare

Healthcare rationing, whether on the supply side (i.e.shortage of specialists or MRI machines) or on the delivery side (i.e. like when the U.S.S.R. would give their elderly populations placebos and not "waste" money on them or when in the U.S., until a few years ago, Medicare would  refuse to pay for (or ration) preventative care) needs to be carefully scrutinized and its ethical implications fully understood.
Whatever your view of Obamacare, I want to report a story that occurred yesterday at one of the VA Hospitals here in Chicago, Illinois.
 For the past several years, I take an elderly gentlemen, Mr. G, to the VA hospital for his various appointments...including to his GP who monitors his general health, and to the Vascular Surgery Clinic who monitor his aortic aneurism (it sometimes is frustrating to deal with the vascular surgeons because every time we go we see a different resident or fellow who is evaluating the case for the first time...so much for continuity of care.)  FYI, 2-4 hour waits at the Vascular Surgery Clinic is the norm, not the exception. Quite frustrating! Also, it frequently takes a relatively long time to receive appointments with specialists even when there is a medical necessity.   
In late March or early April he had an eye exam and ordered his new eye-glasses. Those glasses were finally ready this week...over 3 months later. We went yesterday to pick them up. The waiting area was overcrowded with people waiting with much patience for their turn to see the opticians. I sat on the floor due to the overcrowding. Yes, the glasses were very cheap but that is only true if your time has no value and you can live 3 months without your new glasses.
Why can't the VA use a system like the Medicare reimbursement system and allow veterans to go to any optitian, dietican, physician, etc. and just reimburse the practitioners...that way we can chose to go an optician who can deliver the eye-glasses in less than 3 months.
And, more importantly, we can choose to go the Vascular Surgeon of our preference and have one physician following the case over an extended time period.

And now for the good that occurs at the VA...This elderly gentlemen. Mr. G, was declining precipitously a few months ago. His bp was 200 over 140, he was dizzy, filling up with water, having trouble seeing, falling down, and becoming more and more incoherent. His GP, Dr. Caprio, (who just finished up his residency and who we are sorry to lose because he really cared about Mr. G) pulled out all of the resources of the VA to keep him in his own apartment and out of a nursing home (which would be tremendously more expensive to Medicaid or to the VA, whoever would have ended up paying for it.). He ordered a visiting nurse 1-2 times a week and a visiting occupational therapist 1-2 times a week. I contacted the Council for the Jewish Elderly (CJE) who now drop off 5 meals a week and send in a lady who cleans his apartment, does his laundry, and does his chores for him.

The bottom line is this....does the VA offer some good services? Yes. Could a non-VA physician have organized a visiting nurse? Yes. Would Medicare have paid for it? Most probably yes.

I just don't see why veterans cannot receive services under a health plan styled after Medicare  and  the government can eliminate almost all copays and make the coverage for Veterans even more generous and not age dependent. I also think that veterans would probably receive speedier service and would be able to go to any physician who accepts Medicare and they would not have to schlep out to the VA Hospital for every appointment.

Implications for the implementation and operationalization of the amorphous healthcare bill known as Obamacare? Draw your own conclusions.
I guess at least we are not being forced into VA style healthcare. Yet.

Which Type of ESRD Treatment Modality Correlates with the Longest Life Expectancy (and intermediate and shortest, too)

Table 5.a
Adjusted survival probabilities, from day one, in the incident ESRD population. Y-axis percentage of ESRD population. X-axis is length of time of survival, in months.

I created the graph based on data of 5 year survival rates based on all types of dialysis combined; hemodialysis; peritoneal dialysis; and transplant. The data was taken fron  the United States Renal Data System (USRDS) Website from  http://www.usrds.org/atlas.aspx and http://www.usrds.org/2011/pdf/v2_ch05_11.pdf

Table 5.a

Adjusted survival probabilities, from day one, in the incident ESRD population. Y-axis percentage of ESRD population. X-axis is length of time of survival, in months.

The Human Toll of Kidney Failure

While this blog tends to deal with macro issues related to ESRD/kidney failure it is important to keep in mind the truly devastating affect of kidney failure on the individuals suffering from kidney failure.

A brief vignette:
I am in contact with a ~60YO male suffering from ESRD who goes to dialysis 3 times a week to stay alive. He is extraordinarily depressed by his situation. He has practically no chance of getting a kidney transplant because of his advanced diabetes and emphysema. He also is basically blind. He is morose, forlorn, and morbid. He suffers terribly. His life expectancy is quite short (although hopefully he will continue to live for a long time) and his quality of life is atrocious.

Application:
It is important to keep in mind every individual in mind when making organ transplant allocation policy. Every action has a reaction.

Expanded Criteria Donor Organ: New Hope

Many people who are on the kidney transplant waiting list die while they wait for a kidney transplant. Many other people die without even being put on the transplant list.
"Performing renal transplant with a perfectly healthy kidney to all the patients with ESRD is
an ideal scenario. But growing waiting lists and shortage of kidneys makes it necessary to
make some compromises. Use of so-called, marginal or borderline donors can increase
donor pool by almost 20 to 25%." (Renal Transplantation from
Expanded Criteria Donors. Renal Transplantation – Updates and Advances. Pooja Binnani, et al). See here to see the full article on the subject from which this quote was taken.
To put it in plain english, if a person cannot a brand new BMW does that mean he doesn't buy a car at all or does he buy a used Toyota Camry? Obviously, the person takes what they can afford to drive. A person would much prefer an Expanded Criteria Donor (ECD) kidney and significantly increase his probability of 5 year survival than insist on a Standard Criteria Donor (SCD) kidney and being dead by the time it would be his turn on the waiting list.
According to information on UC Davis Transplant Center website found here,  "[s]tudies have shown that transplant patients who receive either SCD or ECD kidneys have a superior survival when compared to remaining on dialysis." It also states that, "[a]ccepting an ECD kidney may significantly decrease the amount of time a person waits for transplant. The ECD kidney comes with some risk for earlier graft loss but the exact risk is unknown. A good estimate is that 8 of 10 ECD kidneys will still be functioning at one year while 9 of 10 SCD kidneys will be functioning at one year.  At 5 years, half of ECD kidneys will still be functioning compared to 7 of 10 SCD kidneys."
Below is the survival percentage for people with ESRD depending on their mode of treatement at the 5 year point of time. Kidney transplantation  offers highly superior survival rate - 33%-39% increase in 5 year survival - compared to the other treatment modalities (See Below). Even if the use of Expanded Criteria  Donor Kidneys shaved a few percentage points off the 5 year survival, most people will still benefit from receiving these organs that are currently frequently discarded.
Again, while in an ideal world everyone would receive the highest quality kidney possible, people's probability of 5 year survival is greatly increased even if they receive an ECD kidney. 

	2004 ESRD cohort: 5 year survival based on treatment modality
Dialysis	34%
Hemodialysis	34%
Peritoneal dialysis	40%
Transplant	73%
based on http://www.usrds.org/2011/view/v2_05.asp

Are You A Person Or An URP (Unit of Revenue Production)? Part 1

I have been treated at different medical centers and by different physicians over my life. I also have been able to observe clinical care as an observer when I have taken family and friends to the hospital.

I feel that care can be delivered either by viewing the individual who has come seeking medical attention as a human being (what I describe as the Mayo Clinic Model) or, sadly, as merely a way to make more money for the hospital or physicians. I describe the latter approach to medical care delivery as viewing people not as human beings, but, instead, as URPs, or Units of Revenue Production.

Human being needs to be treated with the highest level of clinical excellence while making sure that they are treated with as much respect and dignity as possible while they receive medical attention. Many mornings I drink out of a Mayo Clinic mug which has the Clinic's motto written on it. Mayo's primary value is that "the needs of the patient comes first." See the Mayo Clinic Mission and Values here.

I think that one of the reasons that Mayo is able to be so successful at treating people well is because their physicians are paid a set salary so they can spend the time necessary with each person to treat them appropriately. They don't get additional salary for hitting revenue and volume targets dictated by some number cruncher from hospital management. 

Then there are medical centers and physicians who focus on what is best for them and their bottom line. One situation where this is particularly problematic is when a new procedure or technique has become adopted in a particular medical specialty which creates better results for patients. Physicians who are "early adopters" are able to treat their patients as soon as a better mode of treatment is available. Then there are physicians who continue to use the old procedure even at increased risk to the patient relative to the new procedure.

Case and point: When either procedure is medically ok to perform, should a urologist who only removes kidneys the old-fashioned method - through surgery - let his patient know that the kidney could be removed laproscopically and that the laproscopic procedure correlates with a much quicker and easier recovery? Does he have a duty to inform his patient? If you view the patient as an URP, then the urologist will just go ahead and perform the procedure. If the Mayo Clinic Model is used, then the urologist will inform the patient of the risks and benefits and encourage the patient to do what is best for the patient.

More on this issue later....

(FYI, here are some of the hospitals I have been at...mostly as a visitor and not as a patient: The Mayo Clinic and its 2 hospitals - St. Mary's and Rochester Methodist; Mount Sinai Hospital in Miami; Kaplan Hospital in Rehovot, Israel; Jesse Brown VA Hospital in Chicago; and many other Chicago Hospitals including Loyola; Northwestern; Children's Memorial; Evanston; Skokie; Highland Park; Glenbrook; Swedish Covenant; St. Francis; Northwest Community; Lutheran General; Holy Family; and many others...)

Live Donor Donation: Kidney donated by Rabbi Chaim Soloveichik

I am proud to be friends with some of the family of the late Rabbi Ahron Soloveichik.
Rabbi Ahron Soloveichik was renowned for his kindness and sensitivity towards all human beings...especially towards people who in reality had problems or people who were just considered by society as lowly, poor, ill, downtrodden, handicapped, unusual, or just plain different.
To give only a very small vignette about his extreme righteousness and piety, a mentally disturbed woman once pushed Rabbi Soloveichik onto the NY Subway tracks in front of an oncoming train. Rabbi Soloveichik jumped out of the way and saved himself. But the story goes on. The disturbed woman fell onto the tracks as she was pushing Rabbi Soloveichik in front of the train. She was unable to get herself away from the oncoming train under her own power so Rabbi Soloveichik risked his life and also pulled this women who had just try to kill him to safety.
With such an illustrious lineage, I am not that surprised that Rabbi Chaim Soloveichik of Ramat Beit Shemesh,Israel, who is the youngest child of Rabbi Ahron Solloveichik, made an altruistically donated one of his kidneys to a women in need of a kidney a few weeks ago. A short article about it is found here.

I hope Rabbi Soloveichik and the women are both feeling well.

Organ Transplant Policy: Goal

This equation should guide and be the goal of all people who research access to transplantation regarding ESRD/kidney failure:

Supply of Kidneys Available for Transplantation = Demand for Kidneys Needed for Transplantation


Other Considerations:
1. Goal: All organs should be obtained in an ethical manner.
Operationalization: ??? Work on moral and legal issues. ???
2. Goal: Medicare should provide coverage for kidney transplants in the most cost effective manner possible.
Operationalization: All changes should be budget neutral (or even create savings) for Medicare's expenditures on ESRD treatment.

Man Survived 39 Years on Dialysis: A Call to Action

Dr. Robert Rigolosi reminisces about his patient Ed Strudwick who lived for 39 years on dialysis. And Dr. Rigolosi was Ed's physician for all 39 years that he was on dialysis. Read Dr. Rigolosi's thoughts about his patient here.

Let Ed Strudwick's great example of living 39 years on dialysis give hope to the ESRD community that dialysis is not a death sentence, but rather it can be a life giving process which enables people to live long and productive lives!

Researchers (and ESRD patients themselves) should study and analyze dialysis centers and physicians whose patients are on the far side of the bell curve to try to figure out what increases life expectancy among these ESRD patients so that best practices can then be shared among the general ESRD population so that all people can benefit from what these physicians and dialysis centers are doing to elongate the lives of their patients.

Here is a very interesting excerpt from the article regarding longevity of patients on dialysis in Dr. Rigolosi's own words:

"Remind your dialysis patients that compliance is key. Ed's longevity was due to his full compliance with diet, medicine, scheduling, and follow-up. If you have a compliant patient like this, you can expect long-term survival."

"We have about 200 patients on dialysis in our center, and I would guess that 10% or 15% of them have been on dialysis for more than 35 years. We may have another 10% that have been on 20 to 30 years.[italics added] Patients do best when they embrace their new disease-driven lifestyle and accept what they have to do. Be sure they understand that they can't be too careful."

And it is important to keep in mind that according to the US Renal Data System 2011 Report, that 5 year survival probability rate in 2004 for people on hemodialysis was only 34%!

Update: Hospital Relents: Little Amelia Has Hope for Life - She Can Get a Kidney Transplant !

We have a nice update to a post from a few weeks ago. The post is found here. Basically, the family of 3 YO girl, Amelia Rivera, understood after meeting with their physician that their daughter was being denied a kidney transplant because of her "mental retardation."

CBSNews reported here that The Children's Hospital of Philadelphia issued a joint statement with Amelia's family that "as an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience." Amelia's parents said in the joint statement that "despite an unfortunate encounter a few weeks ago, we hold The Children's Hospital of Philadelphia in high regard. Our hope is that this experience will heighten the medical community's sensitivity to and support for the disabilities community."

Let's hope that a suitable donor kidney is found for little Amelia expeditiously and that the transplant goes as smoothly as possible.

Kudos to everyone who inundated the hospital with comments and complaints which surely helped encourage them to get their act together and not to deny a transplant to one of the most vulnerable members of our society.

Raising Awareness for Live Donor Kindey Donations through Social Media

How can the power of social media and multimedia be utilized to increase live donor kidney donations?
Some random thoughts...
1. A youtube channel where people who need a kidney tell their story to the world in hopes of finding an altruistic donor.
2. A reality show about the apprehension and angst of an individual and their family as they wait on the kidney transplant waiting list hoping to get a kidney before it is too late.
3. A reality show/youtube channel dedicated to following a person on dialysis who then gets a transplant and compare the drama relating to the transplant surgery and also to compare their (quality of) life before and after the transplant.
4. There already is a twitter feed to monitor all things related to ESRD and kidney transplantation here. Dr. Robert Hickey, a great hero and advocate for all things related to kidney transplants, constantly tweets all types of info and links to articles related to ESRD (fyi, he also tweets strong political stuff there so you'll either hate it, love it, or you can ignore it.)


Anyone else have suggestions???
Dr. Hickey's comment:
Robert F. Hickey, Ph.D.Feb 17, 2012 12:04 PM

We would be well served by implementing every option available to encourage human organ transplants as long as they are legal and ethical. However, unbelievably, there are those, individuals and so-called non-profits, doing evrything they can to discourage patients from advocating for themselves. More on that issue below.

A reality show focusing on the frustration, anguish, and fear of patients waiting for organ transplants and their families would be extremely revealing. CBS attempted to bring a weekly show, Three Rivers, to the audience. It didn't catch on!

The show was set, ironically enough in Pittsburgh, considered by some to be ground zero in the transplant world. It also happens to be the town where the University of Pittsburgh kidney transplant center was recently shut down. Patients were given contaminated organs. The show was stilted and not a reflection of what actually happens from a patient/family perspective.

The transplant establishment has engaged in unfair and unethical efforts to minimize the impact of social networking by patients to find living donors. This week I received 2 calls from patients who were told they could not get kidney transplants if they found donors through www.matchingdonors.com or any other such Internet site!

Two weeks ago, Dr. F. Coors, at University of Colorado made a public statement indicating that social network sites were dangerous because you never know what you're getting. Nonsense! A prospective donor and Transplant recipient will go through 6 to 9 months of testing and intrusive interviews before any transplant will be approved. I've been through along with my donor in 2004.

Some transplant centers claim they will accept prospective donors who are identified through social media while not being sincere about their intentions. This happened this week to 2 patients at Cedars-Sinai in LA. Both presented with altruistic, non-related, living donors for kidney transplants. One was told Cedars transplant team would not accept any donor without insurance. The other was told no donor who had to travel to the hospital would be accepted. First, in the case of kidney transplants, Medicare/Medicaid will pay living donor medical expenses. This includes any medical issue arising from the transplant for several years. Many recipients also have private insurance in partnership with the government coverage. Secondly, there is no valid or ethical reason to disqualify a prospective donor based on where they live within the USA. These are smoke screens.

The point is, we can do all we can to promote organ donation. However, if the powers that be in the transplant industry don't stop erecting manufactured hurdles to transplantation, nothing is going to help. The so-called non-profit structure of the US transplant system is a complete sham. UNOS and the 58 Organ Procurement Organizations across the country and their managers have become millionaires on the monopolistic system they control. When that monopoly is broken innovation will come and the transplant waiting list will be resolved within 24 months.

As long as we have Organ Procurement Organizations making $50 million to $140 million annually on procurement fees, organ sales prices, the system will not change! As long as executives at UNOS and the OPO are being paid $500,000.00 to $700,000.00 per year, the system will not chgange.

Scarcity of Kidneys: A Physician Making a Child Ineligible for A Kidney Transplant because of "Mental Retardation"

Read this mother's heart wrenching story here of how a transplant physician at the Nephrology Department at Children’s Hospital of Philadelphia has reportedly denied a little 3 YO girl with a rare genetic disorder the chance of getting a kidney transplant because she is "mentally retarded."
Here is a partial transcript of the emotionally charged conversation according to the mother's account:
(Start Transcript)
[Mom]“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

[Transcript Surgeon] “Yes. This is hard for me, you know.”
(End Transcript)

Nobody should pretend to be omniscient, or to "play God", and certainly, nobody should revel in "playing God."
While I certainly understand the mother's position, I can see the physician's position although I vehemently disagree with it. I hope to write an extensive post on why I feel this way.
But, the mother reports she offers to find a live donor.

[Mom]“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

[Doctor] “Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays”
If the family finds a live donor match from their family, surgeons are able to implant even an adult kidney into a child's body by implanting the kidney into a different part of the child's abdomen. (See here to read about cutting edge research being done at Stanford's Lucile Packard Children's Hospital where they have pioneered a method to keep adult kidneys alive even in small children where blood tends to pool and clot in the relatively large kidney causing the organ to stop functioning.)

Assuming the family is able to obtain its own donor, the transplant surgeon should keep his opinion completely to himself... the family is not getting involved with the transplant waiting list so he should not "play God" and pretend to be omniscient...he should allow the parents of this little girl to do everything they want to keep their child alive.

Morality: Is it Moral to Outlaw the Exchange of Money to Obtain a Kidney Transplant?

The bottom line is this: While some may argue it is immoral to buy and sell organs, I argue it is much more immoral to cause people who would otherwise be alive to be dead because less organs are available to the market. Let's keep more people living and reform the market for organs. A well regulated market will allow people to buy and sell organs and thus increase the supply of organs available and help everyone....because for every organ that a richer person bought, a poorer person will now have access to one more organ that is now available to the market.
Sometimes, the most moral decision is made not because it is not without any moral ambiguity or taint, but rather because it is the best option among many bad options.

Case and Point: The U.S. and the U.K.'s treating the evil Stalin as an ally in order to defeat an even greater evil, Hitler, in order to save Europe (and possibly the world) and defeat Nazi Germany.

But, clearly, to destroy Hitler, morality dictated we cut a deal with Stalin to carve up post-war Europe in order to saving the world from Hitler's ambitions of a 1,000 year rule where he would purify the world from everyone except those of the Aryan-race.

When Al Gore and Orrin Hatch promoted the passage of the National Organ Transplant Act of 1984 (NOTA), its purpose was "[t]o address the nation's critical organ donation shortage and improve the organ matching and placement process." See here.
It also outlawed the buying and selling of organs for transplantation.

This piece of legislation constantly causes the death of people who are unable to receive an organ for transplantation before they die.

The are not a finite number of organs available for transplantation in the U.S. that we have already reached. Putting aside deceased donor donations, there is plenty of room for live donors to supply many kidneys to people on the waiting list and thus alleviate the shortage to some extent. If we rely on altruism alone, a certain quantity of kidneys will be supplied to the market. If live donors could be compensated for their very valuable donation (dialysis for people with kidney failure can easily cost $70,000 per year and Medicare [AKA the taxpayers] covers all people with ESRD regardless of age) then the quantity of kidneys supplied to the market would increase and the shortage can be decreased or possibly even be wiped out. See an old post here where I discuss a possible government policy where live donors are given a $50,000 tax refund for their kidney.

NOTA must be reformed to save lives!!!