Prop. 8 won’t improve dialysis patients’ treatment

I am the CEO of the National Kidney Foundation. I am a believer in this nearly 70-year-old organization that was started at the kitchen table of a mother desperately trying to save her child’s life. I 100 percent buy into our mission to be an advocate for all kidney patients and relentlessly fight for their quality of life, their treatments and their cure.

I am also appalled at the tens of billions of dollars spent in this country for dialysis care for several hundred thousand patients. This is a huge cost to our overall healthcare system. Especially when more than 60 percent of kidney failure, which requires the patient to either have a transplant or go on dialysis to live, is preventable.

Proposition 8 as written would add to patients suffering, their struggle and worse.

Come to our offices any day of the week and you will see a great deal of our time, talent and resources devoted to finding ways to reduce the impact this dreadful disease inflicts on millions of people and how we try to help families deal with the physical, emotional and financial burden caused by this diagnosis.

It would make my job and the team’s job at the NKF so much easier if we no longer had to worry about the rising costs of healthcare or had to advocate to raise the standard of care for patients or worry that the economy of the industry has outpaced the purpose. We would much prefer to advocate for investments and innovation in prevention, early detection, improved treatments and ultimately cures.

The message of Proposition 8 on the ballot this November is that patients who must live with the invasive and exhausting treatment of life-saving dialysis will be better off if Proposition 8 passes. The proposition leaps to the assumption that dialysis patients’ quality of treatment will improve. This is incorrect.

Proposition 8 would do the opposite, unfortunately, and I can’t support it. The proposal as written would add to patients suffering, their struggle and worse.

To be sure, the cost of health care is a growing issue. Kidney disease is on the rise and is just as complicated as government regulations, the U.S. healthcare system and the labor issues that face our nation. But complicated problems can rarely be solved with quick solutions.

This proposal on the California ballot is fraught with consequences that these already struggling patients cannot afford to bear.

I know firsthand the risks taken every day by patients on dialysis. My family has battled chronic kidney disease for generations. My grandfather died at age 43 of kidney failure. I was diagnosed at age 40 and had a kidney transplant fourteen years ago after dialysis. And last month, we lost my mom to kidney disease. She was on dialysis for seven years. My mom, like all other dialysis patients, had to be driven every time she went to her center for the three-times-a-week treatments.

Typical of dialysis patients, she planned everything in her life around her treatment schedule. Her health was our daily concern. She was constantly dealing with blood that was too thin or too thick, nausea, and fluctuating blood pressure. She always worried about infections, pain and discomfort. Though she made the best of it, she never really felt normal and if she did, it didn’t last long.

My mom was actually one of the fortunate patients. She didn’t have to travel very far to her center. She felt comfortable there and, of course, she was the mother of the CEO of an organization devoted to helping patients manage this life-changing burden.

But like all dialysis patients bound to the machine three times a week, she was exhausted, and her body was worn out. Dialysis does that. It is both a lifesaver and a drain. Without it, patients cannot live.

Why would anyone want to make that unthinkable burden any more difficult than it already is? Yet, that is what Proposition 8 would do.

In my role as CEO, I am fully aware of the need for improvements in the care of dialysis patients like my mother. There is so much room for improvement and the NKF is working hard toward those goals. I join so many newspapers, nurses, doctors and patients who see that Prop 8 won’t do anything but restrict funding to an unsustainable level. Dialysis providers will close clinics that operate in the red and that will reduce the number of centers available to patients, especially in impoverished and rural communities.

The issue is complex, but the math is simple. Any cuts to patient funding are unacceptable. When centers close, patients have far fewer options for treatment or none at all. I am not much for hyperbole, but there seems no other way to say it, if this measure passes, patients will miss treatments, jobs will be lost, and some patients will likely die.

Please vote no on Proposition 8 and let’s all go back to the drawing board to create real reform because it is desperately needed. At NKF we will continue to be as passionate and relentless in our pursuit to improve the quality in the lives of kidney patients and will continue to join with other people, groups, and organizations who will do the same.
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Editor’s Note: Kevin Longino, a kidney patient, is the CEO of the National Kidney Foundation.