By Joyce F. Jackson
For Northwest Asian Weekly
Editor’s note: Joyce F. Jackson, CEO and president of Northwest Kidney Centers, originally presented this as a speech given to the Seattle Rotary at its Jan. 25 meeting at the Seattle Convention Center. The speech has been edited from its original form.
Seattle is an amazing place in which to live. It’s also an amazing place in which to be sick.
Seriously. If you have to be ill, you are fortunate to live in a place where you have access to world-class health care.
But it hasn’t always been that way.
Before the early 1960s, if you had the misfortune to have kidney failure, you died. Period. Kidney failure was a death sentence. Not just for people here in Seattle, of course, but wherever you happened to live. The late 1950s and early 1960s were certainly not the Dark Ages. We had already developed treatments and even cures for many previously deadly diseases and conditions. But permanent kidney failure was not among them — until 1960.
That year, right here at the University of Washington, a life-saving innovation was unveiled.
Dr. Belding Scribner created a blood access device that made long-term dialysis possible for the very first time. Finally, people whose kidneys no longer worked well enough to filter out impurities, waste, and excess water from their bodies could replace that function with dialysis.
Kidney failure was no longer a death sentence.
Something very Seattle-like happened back in 1962 when dialysis first began. Scribner did not want to see his method patented and sold. He wanted everyone who needed care to have access to it. Northwest Kidney Centers was established as a community-owned nonprofit organization and began to share the technology and process of this life-giving gift of dialysis far and wide. People came from all over the world to learn how we did it, and as a result, over the past five decades, millions of people have lived fuller, longer lives thanks to the therapy that Northwest Kidney Centers birthed into reality.
Like any start-up endeavor, the fledgling nonprofit Northwest Kidney Centers had growing pains.
Our first location was the basement of what was then the nurses’ residence at Swedish Hospital. Only three beds were available and we could treat just nine patients a week.
Space wasn’t the only thing that was limited. So was funding. Only a very few fortunate people could be treated. So a committee of community members was formed to determine who would receive this life-saving treatment.
Among other things, patients couldn’t have heart conditions. They needed to be financially self-sufficient. And they couldn’t be any older than 45 or any younger than 18.
Life Magazine even ran an article about the committee — probably one of the very earliest public discussions of biomedical ethics — with a photo of seven men and women in silhouette — they were anonymous — entrusted with the serious responsibility of deciding who would receive care.
Most of the time, the committee gave this “golden ticket” to middle-class men in their 30s with genetic kidney disease, reasoning that these bread-winners needed to stay alive to support their families.
But one lucky person didn’t fit the typical profile. She was only 19 years old, and her name was Nancy.
As a young girl, Nancy contracted a virus that affected her kidneys. For a decade, it kept her from doing many of the things a young girl should do. But by the time she reached the age of 19 — and despite the best efforts of her physician, the famous Dr. Scribner — her kidneys were failing completely.
When Nancy’s case was presented to the committee, she was chosen to receive dialysis.
Over the next two and a half years, Nancy came into Northwest Kidney Centers three times a week for four hours for dialysis.
Nancy also gave herself dialysis at home, which Northwest Kidney Centers coordinates for our patients. And, she received four kidney transplants.
Most people are surprised to learn that a transplant is not a forever cure. First of all, not everyone is medically suited for a transplant. You must be relatively healthy. You can’t smoke. If you have had cancer in the past, you must be a survivor of more than 10 years. And you must be able to withstand ongoing immuno-suppressant drug treatment for the rest of your life. Secondly, not nearly enough donor kidneys are available. And finally, transplanted kidneys have an average life span of about 11 years. So people often have multiple transplants to live a long life.
That was the case with Nancy. And through it all, Nancy raised two children, became a single mother, and worked as a teacher. When her children were preschoolers, she started studying to become a nurse — a career that subsequently spanned almost 30 years.
Without dialysis, Nancy would have died while she was just a teenager.
Nancy contributed immeasurably to her family, students, patients, and community. And today, nearly 50 years after receiving her first dialysis treatment, Nancy is still a friend of Northwest Kidney Centers, helping us celebrate this 50-year milestone in our existence.
The landscape today
Nancy represents the 400,000 people in our country today with kidney failure — defined as having 15 percent or less kidney function. And in fewer than 20 years from now, that number will double to 800,000.
Another 30 million people in the United States are suffering — not from kidney failure — yet — but from some form of kidney disease. One in seven adult Americans has chronic kidney disease. That should be classified as an epidemic.
Look at the people around you.
The odds are that one or more of you will have kidney problems at some point in your lifetime, and some of you are at a higher risk for kidney disease than others.
If you are overweight, you are at risk for diabetes and therefore at greater risk for kidney disease.
If you have high blood pressure, you are at greater risk. And if you have a family history of kidney disease, high blood pressure, or diabetes, you are at greater risk.
If you are a person of color — African American, Asian/Pacific Islander, or Hispanic — you are at greater risk.
If you are over 60 years of age, you are at greater risk.
If you eat large quantities of processed, high-sodium foods liked canned foods, microwave meals, or fast food, or if you use too much prescription or over-the-counter painkillers, you are at greater risk.
It’s because many of the risk factors for kidney disease are largely preventable that Northwest Kidney Centers focuses on more than providing care. We invest nearly $3 million each year into efforts to prevent kidney disease, improve care, and increase quality of life. And we do that through public health education, research, training of kidney physicians, and emergency grants for our patients’ life crises.
Our national for-profit competitors – two dialysis giants – simply cannot respond to patient and community needs the way we can as a nonprofit. It’s because we know this community. We have 50-year roots here. We plan to stay here. And we know how to use resources collaboratively to standardize care and cut costs. It may be more complex to deal with many different health care providers. But that’s OK because, again, we are local and nonprofit.
Don’t get me wrong. We are financially sound and good stewards of our resources. Our budget is largely funded by taxpayers through Medicare and Medicaid, and we all know the stresses on government funding these days. But because we are a nonprofit and can rely on our community for support, you keep us strong through your volunteerism, your advocacy, and your financial contributions.
And we give back to you. From those humble beginnings in the basement 50 years ago, Northwest Kidney Centers is today the largest community-based nonprofit dialysis provider in the United States.
Eight out of every 10 King County residents who need kidney dialysis are treated at Northwest Kidney Centers.
With 560 employees, 100 physicians, and nearly $100 million in revenue, we are among the 10 largest nonprofit organizations in the Puget Sound region. Our survival rate is 9 percent better than the national average. Our transplant rate is 75 percent higher than the national average.
I’m sharing this information not to brag or to seek your support — OK, I am bragging a bit — but because Seattle deserves to be proud of what it has built.
You are responsible for what we have done over the past five decades. This community has created and sustained Northwest Kidney Centers. From board members with names that we all recognize to the thousands upon thousands of supporters and partners over five decades, all have contributed to enhancing and extending life for people with kidney disease, not just here, but all over the world. As members of this community, you can all take some credit for that accomplishment.
But because you are part of the community that owns Northwest Kidney Centers, you also bear some responsibility for our kidney health mission. So I am going to leave you with three things that I hope you will do to support that mission:
1. Watch the salt! Don’t worry about removing the shaker from your kitchen table, but be aware of hidden sources of salt in fast food, restaurant food, microwave food. It’s all full of the stuff! Read the labels on canned foods and be wary of high sodium counts. Salt causes high blood pressure, and that’s terribly hard on your kidneys. Focus on no more than 400 mg of sodium per serving, because these magic little organs are every bit as important as your heart or your lungs. Treat them well.
2. Evaluate your risk factors. These include high blood pressure, diabetes, being overweight, and a family history of kidney disease. Change the habits and conditions that you can change. And ask your doctor to test you for kidney disease if you fall into high-risk categories you can’t change. And, these tests are inexpensive.
3. Finally, please consider becoming an organ donor. More than 100,000 people in America are awaiting transplants today, including 25 percent of Northwest Kidney Centers’ patients. Although blood relatives are still the best match and first choice as a living kidney donors, we are now able to transplant kidneys from an unrelated donor — a husband, a friend, a co-worker or even a stranger.
But there are just not enough donors. So if you don’t have that little heart on your driver’s license, it means you’ve not signed up as an organ donor when you die. It’s easy to do. (end)