Arlene Mullin’s life was never easy. She was a native Californian, her mother, an early childhood teacher, and her father was a printer. The family unit consisted of seven children. Mullin’s mother worked and attended college, so the responsibilities of taking care of her siblings fell on Mullin. She remembers ironing at ten years old and recalled that she was a “shy, quiet girl.” Mullin stated that she was known as “the responsible one” and was a “caretaker” early. Although her family was poor, Mullin said that her siblings “felt rich if they had a peanut butter and jelly sandwich.” Even when young, Mullin felt people’s pain.
Mullin is also an empath. Empathy is the ability most humans have to understand the way someone else is feeling. Unless you are a sociopath or narcissist, you will have the ability to feel empathy for others on some level. People registering high on the empathy scale are known as empaths. They are also highly intuitive. Mullin describes herself as being able to “feel other people’s pain.”
Mullin’s parents divorced when she was thirteen. The additional responsibilities did not allow Mullin to pursue an academic track in high school. Mullin attended community colleges and went into a Cleveland Clinic program in Ohio, where she trained as a medical technologist in 1974/1975. Mullin spent the next thirty years in the laboratory until she received cross-training in dialysis. Mullin liked dialysis because “there was time to do patient contact.”
Dialysis is a process where excess water, solutes, and toxins are removed from the blood in people whose kidneys cannot perform that function naturally. It is called renal replacement therapy and has been around since the mid-1940s. One needs dialysis when one develops end-stage kidney failure. Dialysis does some of the work of healthy kidneys, but it does not cure kidney disease. A person usually needs dialysis treatments for the remainder of their life, unless they can get a kidney transplant. The average life expectancy on dialysis is five to ten years, but some patients have lived on dialysis for twenty to thirty years. Dialysis is expensive, but the federal government pays up to eighty percent of all dialysis costs, with private insurance or Medicaid programs contributing.
Mullin enjoyed working with dialysis patients. She worked with “street people” for six years, and she liked working with the families. Mullin believes that “we are all the same; there is no better than, or lesser than.” But Mullin discovered that the Stark Law did not apply to nephrologists (a physician who focuses on diagnosing and treating kidney diseases). The Stark Law is a set of United States federal laws that prohibit physician self-referral, specifically a referral by a physician of Medicare or Medicaid patients to an entity for the provision of designated health services if the physician has a financial relationship with that entity.
Traditionally, nephrologists took care of their own patients, Mullin stated, “but the industry got corrupted.” Because dialysis is immune from the Stark Law, big companies became involved as business partners. For-profit businesses became partners with medical directors and nephrologists, opening their own laboratories, pharmacies, and vascular surgeries. Mullin advised that “Warren Buffet is one of the most prominent investors in dialysis.” The cheaper the care in dialysis, the more profit for the investors. Mullin stated that the United States has the “third-highest mortality rate globally with dialysis.” Another startling statistic Mullin stated “is that dialysis is the third highest on the federal budget for Medicare.” (This figure is highlighted in a 2018 study from the University of California called “The Kidney Project.”) Dialysis patients used to live for up to twenty years, and now, the typical life expectancy is three years. This is because, Mullin said, “dialysis patients are getting cheaper care, resulting in more profit for the investors.” Mullin stated that “end-stage renal disease and kidney dialysis has evolved into widespread 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 unethical and immoral practices of facilities.”
Mullin came to these conclusions because she saw herself and others in the dialysis field were healthcare workers who received “on the job training.” Mullin saw that she and other healthcare workers were not licensed or registered with any state or healthcare organizations for dialysis. The dialysis workers had a “direct and hands-on care response for patients” that included inserting needles into their veins or graft to connect them to their dialysis machine to initiate their lengthy treatment. Mullin also stated that she and others “did not have a comprehensive understanding of renal disease and process, the psychosocial problems, most of all, the dangers of the equipment used and problems associated with the chemicals used in the reprocessing of dialyzers.”
Mullin spent months and months of witnessing the improper use of equipment, supplies, drugs and “above all watching licensed professionals permitting these acts to proceed at the cost of the patient’s health and welfare.” Mullins reported her concerns inside the medical setting and saw no results. She remembered what her grandfather told her, “you are just as guilty if you see injustice and do nothing.” Mullin wanted the dialysis community to do something, and her conscience would not let her be silent. She filed complaints with the Region 10 Health Care Finance Administration (HCFA), a part of the U.S. Department of Health and Human Services. This agency is responsible for administering Medicare and Medicaid. HCFA violated Mullins’ confidentiality and referred her complaints back to the Renal Network, which was the subject of Mullin’s complaints.
Mullin then filed a complaint with the State Department of Health, whose investigation discovered that the State does not regulate End-Stage Renal Disease Facilities, and therefore could not impose sanctions. Mullin stated that her life’s path has always been challenging, but no matter “how many times I get knocked down, I always keep going.”
In 2004, Mullin’s husband was dying of pancreatic cancer, and he told his wife, “You can’t save me, but save as many dialysis patients as you can.” That has kept Mullin going as well as a close friend who told her, “You are Christian, and I am Jewish, but why can’t we all be good Samaritans?”
She saw the ethical wrongdoing by those in charge of kidney dialysis in the United States. She knew it was a matter of conscience for her. Mullin gathered documentation, letters, phone calls, and interviews with patients, their families, dialysis employees, and medical professionals. She gathered documentation that showed regulations were needed to provide the dialysis community with guidance and healthcare that had “morals, ethics, legal boundaries and above all the care and respect patients deserved.”
Mullins saw that for-profit dialysis was the only group of physicians immune from the Anti-Kickback Statute and Stark Law, which allowed physicians to profit from a dialysis patient’s care. The dialysis corporations had the finances to purchase lobbyists and public relations firms. It seemed apparent these corporations benefited at the expense of public physical and mental health and only “received a slap on the hand for wrongdoing.” Mullin stated that “It saddens my heart to think that dialysis 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.” Mullin became aware of cash and stock options are given to the dialysis physicians from for-profit corporations. Physicians were given a certain amount of money for referring patients to a clinic. The cheaper a clinic is run shows up in maximum benefits for the profit sharers.
Mullins stated that “Patients are on the Stock Exchange since their physician is in business with the Dialysis Corporation.“ Many dialysis patients were afraid to complain since their lives are held in the balance. Mullin stated that the dialysis industry knows that dialysis is the only medical disease that the government pays as a primary eighty percent of all costs. Patient insurance is secondary. The government is also charged an extra $200 a month for notifying the government that the dialysis patient is still alive. One only has to look at the stock market to see that physicians and dialysis corporations make millions of dollars in profit off government expenses and patients’ lives.
Mullin noted that the HCFA set up an oversight board called The Network. They are responsible for giving the statistics to the government and handling all dialysis complaints. After Mullin complained to the HCFA, Medicare, and an Attorney General, she discovered her complaints went to The Network without whistleblower immunity. Then Mullin found that three board members of The Network were from the company she was blowing the whistle on. That is when Mullin discovered that patients’ complaints went right back to the patient’s unit for resolving. Mullin stated that when some patients complained, the physician or company could refuse to provide dialysis. Refusing to provide dialysis was like receiving a death sentence because there was nowhere else to go. Mullin realized that clinics could cut patients’ dialysis time and bill for a full treatment. Low-quality supplies were utilized to maximize profits. Training in dialysis units was rudimentary, with new employees having no previous experience. There is evidence, Mullin stated, to support a $6 billion fraud in the dialysis field.
Mullin also alleged in her complaints that dialysis units only get inspected every 4 to 10 years. No matter how badly the facility fails, no one is ever held accountable. The industry, according to Mullin, “has no oversight, accountability and no standards, as they are self-policing.” In 1998, Mullin resigned from her job with the dialysis unit. She felt that ethically and morally, she could not continue working in a situation where the medical facility treated dialysis patients with a “jiffy lube approach.” Mullin observed that dialysis had turned into an assembly line, where profits were the main factor.
As a whistleblower, Mullin experienced retaliation, with heavy breathing phone calls and threats of reprisal. Mullin transformed from whistleblower to advocate and started by founding Dialysis Ethics, then changed the name to Dialysis Advocates and became the CEO in 1998. In 1999 she became a professional speaker and a Legal Consultant working for dialysis patients. Mullin appeared in front of the Special Committee on Aging in the United States Senate on June 26, 2000. Mullin just recently founded Dialysis Advocates Consulting LLC, noting she had “Over 22 years in the trenches and knows the ins and outs of dialysis companies and Medicare.
Mullin stated that she attended National Whistleblower Day and the Whistleblower Summit in Washington D.C. in 2018, and it felt like “coming home.” There was a lot of healing, as a whistleblower realizes they are not alone. Mullin believes that 1. she controls nothing 2. it is better to have positive thinking, 3. people come unto your path to help you, and 4. things will change.
Mullin expects the next year will find profound changes in the dialysis world, and nothing will stop the train of change that she has set in motion. Mullin has significantly contributed to making the world better for dialysis patients, and she has rallied celebrities to her cause. Like a real empath, Mullin states that “whistleblowers have to face their mortality,” and she intends to continue advocating for dialysis patients as “my life is not worth more than the patients.”