Arlene's US Senate Testimony
Dialysis Senate Subcommittee - 2000 hearing
Thank you for this opportunity to be heard. The foregoing testimony represents how End Stage Renal Disease and Kidney Dialysis has evolved into a National Use and Abuse of Medicare Dollars and Dialysis Patients. This National Abuse frequently includes unreported patient deaths that are not related to their chronic disease, but to unethical and immoral practices of facilities.
Like so many others in the dialysis field, I was just a healthcare worker who received "on the job" training. I am not licensed or registered with any state or healthcare organization. I had direct and complete hands on care responsibilities for patients including inserting needles into their veins or graft in order to connect them to their dialysis machine to initiate their lengthy treatment. I, like many others at this level, did not have a comprehensive understanding of the renal diseases and process, the psychosocial problems, and most of all, the dangers of the equipment used and problems associated with the chemicals used in the reprocessing of dialyzers.
After months and months of witnessing the improper use of equipment, supplies, drugs and above all watching licensed professionals to permit these acts to proceed at the cost of the patients health and welfare brought numerous concerns. I followed the chain of command with no results. My conscience would not let me be silent and I filed my complaints with the Region 10 HCFA Office, which violated my confidentiality, and advised the Renal Network to handle my complaint that ironically was about them. I did file a formal complaint with the State Department of Health in which the investigation discovered that the State does not regulate End Stage Renal Disease Facilities and, therefore, could not impose sanctions.
This is a matter of conscience and ethical wrongdoing by those in charge of Kidney Dialysis in this country. I have documentation, letters, phone calls and interviews from patients, their families, dialysis employees and even from professionals that will prove, without a doubt, that urgent regulations need to be mandated in providing the dialysis community with healthcare that has morals, ethics, legal boundaries and above all the care and respect that patients deserve.
As a Nation we have always lent a helping hand to other countries far and wide. We encompassed human rights issues and were angered at man's inhumanity to one another. Senators, the inhumanity is alive and thriving in the industry called dialysis. These dialysis corporations have the finances to purchase lobbyist and public relation firms to sway you to their side. These corporations have become inhuman as to their scheming continues in profiting at the expense of public physical and mental health and receiving only a slap on the hand for their wrongdoing.
It is time we expose and confront the dialysis industry. Many a brave patient has stood up to no avail. Patients have learned that a democracy is not allowed in some dialysis units. Many are afraid to complain because it is their very lives that are held in this delicate balance. You don't complain to the Warden because he will leave you with his guards. It saddens my heart to think that these patients are putting their most sacred possession "Life" in the hands of an industry that only has one thing in mind and that is financial gain. Patients have no where to turn outside of the industry and are placed in a "Do or Die" situation. The industry owns all the cards in this poker game and at this point has all the chips on their side of the table.
For Profit Dialysis has the only group of physicians who are immune from the Anti-kickback Statute and the Stark Law, which means physicians, can profit from their patient's care in more ways than one. This has led to huge cash and stock options given to the physicians from the for-profit corporations. Physicians are given x amount of dollars to refer patient's to a clinic. The cheaper a clinic is run shows up in maximum benefits of the profit sharers. Our patients now are on the Stock Exchange since their physician is now in business with the Dialysis Corporation. These large corporations will try to convince you their budget is being sacrificed because the government hasn't given them a raise. The dialysis industry knows that this is the only medical disease that the government pays as primary 80% of all costs for everyone and the patients insurance is secondary. Then to top it off the government is charged an extra fee of $200.00 or more per month from physicians for acknowledging his patient is still alive. Check the Stock Market and it will confirm that these physicians and dialysis corporations are making millions of dollars in profit off of government expenses and patients lives. I must ask you, "Are our patients lives up for Public Trading?" This is simply conflict of interest.
HCFA set up what is call the Networks. These Networks are responsible to give the statistics to the government and to handle all dialysis oriented complaints. When I complained to HCFA, Medicare and the Attorney General it went straight to the Network without any whistle blowing immunity. I questioned who was on the Network Boards, and there were three board members of the company I wanted investigated since and that's when I found out all patient's complaints were sent back to the patient's unit to be resolved.
Discovering that the statistics the government was given was on the honor system wasn't surprising. To date, Dialysis has No Standards, No oversight and No Accountability. You only have the DOQI Guidelines that disclaim the same guidelines from the Kidney Foundation. (???) A patient's dialysis treatment is based on lab findings and some companies even own the laboratories. Many times a patients treatment is based upon the accuracy of the dialysis machine, and again who owns, operates and calibrates these machines? All we know to date is the more dialysis the better. The patient's quality of life is the true indicator of proper dialysis.
This now brings me to the focus of the healthcare workers who are burned out and actually an assembly line worker. The facility dictates when a patient's treatment starts and ends and seldom is time allowed in between to assure patient safety. Their health and welfare is jeopardized all for the sake of numbers and profit.
Dialysis clinics are paid for a full treatment even if the patient dialyzes only a minute. So clinics can cut a patients time and then justify adding an additional run a week creating more profit. Company profits are based upon the ability to measure and limit the use of supplies. Low quality supplies are purchased to Maximize their profits. Patient safety suffers due to using "a one size fits all treatment plan."
And speaking of patient safety...let's look at the training or education that is supplied to the new employee that has no previous experience. In most facilities the training is inadequate. New employees are out on the floor without even a clue to what lies ahead after a brief training. Strict training regulations must be put in place because our patients are paying the price with their lives on the balance. Patients are not given the choice in facilities to dictate who takes care of them for their treatment. Put yourself in their shoes--living with chronic renal disease, having constant fear for your life and wondering if the person dictating your treatment has adequate education in this field and knows how to use it. Now add to this situation, fear because you are in a situation in which you have no choices and you have no control over your treatment due to the doctor telling you where you dialyze.
Now lets take a look at the equipment used in every hemodialysis treatment. As intricate and sophisticated as our computerized technology is, it is only as smart at the person operating it. Even with all the bells and whistles, I have seen many healthcare workers ignore, question or not even understand these alarms and warning signs that are all a function of the dialysis machine.
Let's not forget the dialyzer, which is the artificial kidney used to filter the patient's blood. This piece of equipment is intended and labeled by the manufacturer for single use only, but these single-use dialyzers are used an average of 30 times sometimes reaching up to 50 uses before disposing just to save money. The chemicals used to reprocess the dialyzer can be extremely harmful and even fatal if it isn't rinsed out properly and are mixes with the patient's blood. Yes, this does happen all too often! How safe and effective can reprocessed dialyzers be especially since the accountability of the processing is another factor. Many times reused dialyzers do not pass pressure test the first time, but are still used. Another factor is the chemicals used for disinfecting the dialyzers are not only dangerous to the patients, but to the healthcare workers.
Units get inspected anywhere from once every 4-10 years and inspection is done by Nursing Home Inspectors. No matter how bad the facility failed an inspection no one is held accountable. This industry has no oversight, accountability, and no standards to date. They are self-policing.
Patients in the dialysis industry are Scared to Death. This industry has the highest mortality rate in the world. The dialysis industry is the owner of a 25% mortality rate, and remember this is just what they are admitting to not even counting the first 90-days or HIV deaths. Europe's mortality is 7 to 9 percent and they do the over 55 age group also.
Dialysis Corporation's are cashing in huge fortunes off the money that was intended for patient care. Just pick up any Wall Street Journal and the figures are in black and white. Quite often, we are not compelled to listen or act on another's problems unless we have been touched by those problems. Beware, kidney failure and disease is on the rise and may be just around the corner for you or your loved ones.
As Thomas Jefferson once said, "Give the People the Facts, and They Will Do What's Right."
Thank you for your time,