Just in Time

I woke up this morning thinking about Audre Lorde. She was the New York State Poet at one time and considered herself a “lesbian, mother, warrior, poet,”but more importantly to me, my writing mentor and friend… and I miss her terribly. Thinking about Audre led me to thinking about my younger daughter (Abby) who won the Black History Month Essay Contest in her elementary school several years in a row by writing about Audre’s and my friendship.

That stopped me for a moment. Audre, Abby, Black History Month. This is Black History Month and it’s half over. Time to write about Black History in Nephrology today.

As Andrea Wurtzburger wrote in People Magazine (I knew there was a reason I grabbed this first each time I waited in one medical office or another.) in the February 13, 2020 issue which was also posted at https://www.yahoo.com/entertainment/black-history-month-explained-started-175250248.html,

Black History Month is an entire month devoted to putting a spotlight on African Americans who have made contributions to our country. Originally, it was seen as a way of teaching students and young people about the contributions of Black and African Americans in school, as they had (and still have) been often forgotten or left out of the narrative of the growth of America. Now, it is seen as a celebration of those who’ve impacted not just the country, but the world with their activism and achievements.”

Now that we know what Black History Month is, let’s see how we can apply it to the field of nephrology. This is what I wrote in SlowItDownCKD 2017 (February 7th) about Dr. Kountz:

“Samuel L. Kountz, M.D was another innovative contributor to Nephrology from the Black Community. As Blackpast.org tells us:

“In 1961 Kountz and Roy Cohn, another leading surgeon, performed the first successful kidney transplant between two people who were close relatives but not twins.  Over the next decade Kountz researched the process of kidney transplants on dogs.  He discovered that monitoring blood flow into the new kidney and administering methylprednisolone to the patient after surgery allowed the body to accept the new organ.

In 1966 Kountz joined the faculty at Stanford University Hospital and Medical School and in 1967 he became the chief of the kidney transplant service at University of California at San Francisco (UCSF).  There he worked with Folker Belzer to create the Belzer kidney perfusion machine.  This innovation kept kidneys alive for 50 hours after being removed from the donor.  Through Kountz’s involvement at UCSF, the institution’s kidney transplant research center became one the best in the country.  Kountz also created the Center for Human Values at UCSF, to discuss ethical issues concerning transplants.”

Kidney News Online at https://www.kidneynews.org/careers/resources/opinion-re-establishing-trust-and-improving-outcomes-in-nephrology introduced me to someone who should be noted in Black History Month in the future since the general public needs to be aware of Chronic Kidney Disease in order to be tested and, ultimately, treated. Dr. Bignall echoes my own thoughts.

“O. N. Ray Bignall II, MD is an Assistant Professor of Pediatrics in the Division of Nephrology at Nationwide Children’s Hospital and The Ohio State University College of Medicine. He is also a member of the American Society of Nephrology’s Policy and Advocacy Committee.

‘To re-establish trust and improve outcomes, we must carry health equity from “the bedside to the curbside.” From research and discovery, to policy and advocacy, nephrologists must engage directly with community members, stakeholders, and lawmakers. Minority communities need to see nephrologists in their schools, houses of worship, block parties, and community centers. We can increase our involvement in community-based participatory research (CBPR) that engages community members in the design, study, and implementation of evidence-based discovery. Nephrologists should also be taking our message to city halls, state houses, and our nation’s Capital to promote kidney disease research and advocacy for all our patients – especially those with disparate outcomes.’ ”

I felt compelled to include Dr. Charles DeWitt Watts who, while not a nephrologist, was eminent in breaking racial barriers so we could have Black nephrologists available to us. The following is from Duke University Medical Center and Library at https://guides.mclibrary.duke.edu/BlackHistoryMonth.

“Dr. Watts spent more than 50 years advocating for civil and human rights and for the quality of medical care for all residents of Durham, especially the poor and underserved. He broke racial barriers when he pushed for certification of black medical students.

First African American to be certified by a surgical specialty board in North Carolina.

Played key role in founding Lincoln Community Health Center, a free standing clinic, which served people regardless of their ability to pay.

Joined the staff of Lincoln Hospital as Chief of Surgery in 1950. Lincoln was one of the few American hospitals at the time that granted surgical privileges to African-American physicians.

Completed his surgical training at Freedman’s Hospital in Washington, DC under the tutelage of Dr. Charles Drew.

Worked to prepare Lincoln’s interns and residents for board certification and convinced Duke University Medical School to oversee Lincoln’s training program so that students could get board certified.

Fought along with other community leaders for the creation of one integrated public health care facility, Durham Regional Hospital, built in Durham in 1967. This led to the closing of both Watts and Lincoln hospitals.

Served as Adjunct Clinical Professor of Surgery at Duke and Director of Student Health at North Carolina Central University.

Served for 28 years as Vice President and Medical Director for North Carolina Mutual Life Insurance Co., the largest African-American managed insurer in the country.

Member of the National Academy of Science’s Institute of Medicine, a fellow in the American College of Surgeons, and an active participant in the National Medical Association.”

Until next week,

Keep living your life!

Help When You Need It

One of the many people I met at the AAKP Conference who opened my eyes to things I’d never even though of before is Samantha Siegner from the Chronic Disease Coalition. We hit it off right away and I felt comfortable exposing my ignorance to her. Once she explained what the coalition does, I wanted all my readers to know about it. Happily for us, Samatha agreed to write a guest blog for us.

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Nearly half of all adults in the United States have one or more chronic health conditions, and the number continues to climb. By 2020, it is projected that over 157 million Americans will battle a chronic disease. While some chronic conditions can be prevented, others are inherited, or may develop as a result of numerous factors. Despite the prevalence of chronic disease, few organizations are specifically dedicated to addressing the needs of patients who battle all types of chronic conditions rather than a single disease.

The Chronic Disease Coalition (CDC) is national nonprofit organization that represents people battling a wide range of chronic conditions, including kidney disease, diabetes, arthritis, multiple sclerosis and more. As patients dealing with kidney disease or other chronic conditions know, it can be difficult to work, attend school or even get adequate health insurance coverage. Our organization works to not only raise awareness and educate the public about chronic conditions, but also to advocate for patients who need better access to care. Our mission is focused on exposing and addressing discriminatory practices and policies that are preventing patients from accessing necessary, often lifesaving care.

Discrimination based on a person having a chronic disease comes in various forms, but we most frequently see it occur in the school, workplace and with health insurance plans.

  1. School: For those looking to complete high school or even college, it can be difficult to regularly attend class or have the energy to complete assignments. For kidney patients, dialysis poses difficulty attending class, as you may be required to dialyze for several hours multiple times a week. It is important to educate yourself on the services offered by the school to ensure that you are receiving reasonable accommodation that support your effort to pursue education.

Our organization works with people to ensure that they are being treated fairly in the school system, read more in one patient’s story here.

  1. Workplace: Many people with chronic conditions may frequently visit the doctor’s office for treatment, response to a flare up or check-ups to ensure that their condition is being managed properly – these actions can require additional time off work. While it is not legal for an employer to ask about your medical history, some patients may disclose it. This can lead to a greater understanding and development of a process for how you miss work, but for others, it may lead to losing their job or being demoted.

The CDC helps patients by supporting legislation that protects the privacy of employee’s medical history and ensures that businesses and corporations cannot discriminate based on their health status. Additionally, we ensure that patients are educated on their rights within the workplace.

  1. Insurance: Unfortunately, insurance discrimination is all too common. Insurers institute a variety of practices to increase their bottom line at the expense of the patients, without consideration for the long-term health consequences. Some of the most common practices include, step-therapy or fail-first, lengthy prior authorization approval times, nonmedical switching and bans on charitable premium and copay assistance, which is a common way for insurers to target kidney patients.

Right now, insurers across the nation are targeting chronic disease patients who rely on charitable premium assistance to help afford the cost of their health care. By utilizing a loophole within a 2014 guideline issued by the Centers for Medicare and Medicaid Services, insurers are denying premium and copay payments made by charities, like the American Kidney Fund, on behalf of patients. As a result, patients are forced off their current health plan and left to find other options. This is a commonly used tactic to force patients off of private health plans and onto public plans, because the insurer doesn’t want to cover chronic disease patients that require expensive, regular treatment, like dialysis. While kidney patients are eligible for Medicare before the age of 65, a public plan may not meet their needs or cover services that can help a patient become eligible for a transplant.

The Chronic Disease Coalition is actively working to pass H.R. 3976, the Access to Marketplace Insurance Act to ensure that patients can access charitable premium assistance and choose the health plan that best meets their needs.

So how does the Chronic Disease Coalition work with kidney patients? In addition to advocating on behalf and beside kidney patients to ensure discriminatory policies don’t hinder their ability to access care, we work with patients in their communities to raise awareness and educate the public on kidney disease at an individual level and through our Ambassador Program.

After receiving an initial diagnosis, many people with kidney failure may not know what to expect from treatment, what questions they should ask their medical team and what changes may come to their daily life. Our Ambassador Program was developed on this understanding and is comprised of active advocates who battle chronic diseases and provide guidance, advice and advocate on issues that concern kidney patients. Ambassadors complete advocacy work that is relevant to their specific diseases and communities each month.

If you are interested in learning more about the CDC and how you may be able to become involved, please click here. Change happens when people speak out, share their stories and take action – the CDC is proud to provide a platform for kidney patients and all people with chronic conditions to do so.

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Did you click through on all the blue words? I did. I’d had inklings of what each of these meant, but the full explanation made my understanding so much better. All I can say is: Thank you!

SlowItDownCKD 2014 should be out on Amazon.com any day now. B & N takes a few weeks longer. This had formerly been the second half of the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. I’d vowed to separate both this book and the equally unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 into two books each… and now I have. Of course, that leaves me with desk copies of each of the Book of Blogs which I no longer need. Want one? Let me know (but only if you haven’t received a free book from SlowItDownCKD before).

Until next week,

Keep living your life!