I was confused when I recently heard talk of “Prop 8,” a ballot initiative in California. A mere 5 years ago we were still talking about an initiative that tried to eliminate the rights of same-sex couples to marry named Prop 8. Google it and most entries you’ll find are still about that Prop 8. But continue to search and you’ll find information about the Prop 8 all Californians need to be concerned about now, the “Fair Pricing Dialysis Act,” which as it turns out, also tries to take something away from a group of people. As someone who was on dialysis not that long ago and is now post-transplant, I knew this was a proposition I needed to know about in detail.
When I was first diagnosed with kidney disease, I quickly learned by talking to family and friends that knowledge about kidney disease in general is quite limited. Beyond the basics of where to find the kidneys in the body (which a disappointing number of people get wrong), barely anyone I know really had an idea of what’s involved with treating people who have kidney failure unless they had a relative or friend who had experienced it. In truth, if my Dad had not also had it, I may have needed a crash course when I was diagnosed. So my immediate thought was, “how are people who have no knowledge of kidney disease supposed to vote on a proposition that affects the lives of dialysis patients?”
Dialysis, like Chemo, is a life or death treatment – not something to be considered flippantly. People who need dialysis are dependent on their dialysis clinics because the average patient needs treatment three days a week for a minimum of three hours a day just to survive. In my 20 years of voting in LA, I don’t recall a ballot measure that has predominantly affected one group of people in this way. I’d hazard a guess people who signed to get the measure on the ballot probably have very little understanding of the critical intricacies of the dialysis process.
After reading the meat of the prop, I had a “that doesn’t sound right” gut reaction. As I examined it further, I realized it presents itself as being a means to “protect” patients and stop the big companies in the dialysis community from taking all the profit, but like many ballot measures we find in every election – the language is meant to manipulate and muddle its purpose.
The ballot measure was introduced by SEIU-United Healthcare Workers West (SEIU-UHW), one of the largest hospital unions in the United States. They have been trying to get dialysis workers to unionize since 2016. They contend dialysis workers want Prop 8 reforms regardless of what happens with union efforts. They claim, “The goal is to hold the dialysis industry accountable and improve life for patients and those who care for them every day.” But opposers say their only goal is to unionize dialysis and it’s all just leverage – a scare tactic to force providers to acquiesce to their union demands at the expense of patients. I have no problem with workers unionizing if that helps them feel secure. But not if patients are harmed in the process.
This would be a good time to mention that due to its expense, kidney disease is the one disease where most patients have some portion of insurance covered by Medicare regardless of age. Patients usually have Medicare and secondary insurance coverage. It’s important to note that Prop 8 doesn’t adequately address patients, mostly low-income, who have treatment covered by both Medicare and Medi-cal. Prop 8 requires dialysis clinics to issue refunds to patient-payers (insurance companies) for revenue above 115% of the costs of direct patient care. In other words, limits up to 15% above what is spent directly for patient care by nurses and technicians, and the equipment and supplies they use. They feel this will encourage dialysis centers to invest in direct patient care because it wouldn’t put limits on the amount spent on direct patient care and improvements.
But what is actually included in the 115%? It says “wages and benefits of non-managerial staff who furnish direct care to patients, pharmaceuticals and medical supplies, staff training and development, healthcare improvements; costs associated with renting and maintaining facilities, utilities, lab testing, and depreciation of facilities and equipment.” These “healthcare improvement costs” are defined as: additional health information technologies, training managerial workers engaged in direct patient care, and patient education and counseling. Anyone who has dealt directly with a dialysis clinic knows there are costs not included in that loosely defined list. Additionally, some of it is open to interpretation, i.e. what constitutes “additional health information technologies?” It’s very dangerous to have people “assume” what may or may not be covered. As a patient, my care would have suffered without all the people who formed a team to care for me. I relied on my Nursing Coordinator, Nutritionist/Dietician and Social Worker.
Medical Directors, Nurse Clinical Coordinators, Compliance Facility Administrators, Staff who help patients navigate insurance options, Non-Clinical Information Technology Professional Services like Accounting, Human Resources, Payroll and Legal all make the process function despite not “furnish[ing] direct care to patients.” To think all these salaries and expenses can be paid out of the 15% allowed is ludicrous at best. One of my friends who is on dialysis told me he was robbed after treatment once and he’s not the only one in his clinic as patients are vulnerable prey post-treatment, so for that reason and others, Facility Security is another crucial expense at some clinics. There are also community-based education programs, non-reimbursable regulatory equipment, and other subsidiary programs that help patients. As the language stands, it doesn’t seem kidney disease research is included as patient care either. And while not every clinic needs all these things, it begs the question, if the rest isn’t covered, what happens? Not to mention, though the State Dept of Public Health would enforce the tracking and reporting of dialysis center patient care costs, how exactly will all this information be tracked? Will that be an additional cost passed on to patients and/or taxpayers? So many questions, so few answers.
Because it doesn’t take these additional expenditures into account which clinics need to function, Prop 8 will inevitably force clinics to decrease staff and services, and some to close – creating a ripple effect throughout the dialysis community. Prop 8 does not show the funds returned to the insurance companies gets reinvested to benefit people who are on dialysis. And there is no requirement that clinics reinvest in workers via higher wages and better working conditions. With less money for employees many will lose their jobs. If employees are let go, there will be more work and less time for remaining staff to do their jobs effectively, meaning less quality care. Simply, my patient peers will suffer. An independent analysis conducted by CA’s former legislative analyst (Berkeley Research Group) concluded that only 69% of clinic costs will be reimbursable under Prop 8. This means 83% of clinics will operate at a loss. When have you heard of a business surviving at that rate of loss for an extended period? They don’t, they close.
If clinics close, people may have to travel further to receive treatment. There are 68K patients receiving dialysis treatment in CA at almost 580 clinics, and demand is growing by approximately 5% per year. Nearly 170 clinics are in Los Angeles county which leaves 400+ spread across a state of 163, 696 square miles. It’s already difficult for many patients to get regular treatment times at clinics that are convenient. Many patients live in rural areas and many rely on a family member to take them to treatment. What if treatment becomes 30 or 50 miles further? One missed treatment and the risk of death is increased by 30%. Some facilities in low-income or rural areas don’t generate as much revenue as others. As it stands, centers with extra revenue can use those extra funds to help a less fortunate facility with their expenses or help build new, more convenient facilities as more patients need care.
Clinics closing will also inevitably lead to an increase in ER visits for treatment which means an increase in cost for Medicare and Medi-cal, which of course means an increase for taxpayers and driving up the costs of the whole health care system. Everyone loses.
In summary, I don’t think the writers and supporters of Prop 8 have asked all the relevant questions. It’s clear to me under Prop 8 patient healthcare quality and services will decrease, patients will not be able to access treatment, and some may even die due to closed treatment facilities and less staff and resources at facilities. Prop 8 fails to concretely prove how patients benefit.
Join Renal Support Network, CA Medical Association, American Nurses Association of CA, National Kidney Foundation, CA Dialysis Council, Renal Physicians Association, CA State NAACP and National Hispanic Medical Association.
Join people who people who have kidney disease, caregivers and families, Nephrologists and other doctors, nurses, clinic employees and over 130 organizations who oppose and vote NO on Prop 8 on November 6th.
Sasha Couch is an East Coast native who has enjoyed her last 19 years in Los Angeles. She has a BA in International Relations from The University of Pennsylvania. Sasha is a kidney transplant recipient. She delights most in her volunteer endeavors, notably working with the literacy nonprofit, Reading Opens Minds.
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