Black Health Matters sat down with Lauren Lee, executive vice president of Stakeholder Engagement at NephCure Kidney International, a patient advocacy organization, to discuss her job function, the state of kidney disease and kidney disease research. NephCure’s research-focused mission is directed to helping patients with rare kidney diseases such as focal segmental glomerulosclerosis (FSGS), minimal change disease and other forms of nephrotic syndrome.
According to Lee, NephCure’s mission is two part—“offering families support, disease information and connection to others, as well as advancing better treatments for these diseases and raising awareness of clinical trials.”
Today, Lee travels across the country to meet with doctors and researchers in the field of nephrology, the study of the kidneys and kidney diseases. She leads a team that manages external relationships with patients, doctors, researchers, pharma and biotech groups and government agencies.
Black Health Matters: What is focal segmental glomerulosclerosis?
Lauren Lee: Many diseases and conditions can affect your kidney function by attacking and damaging the glomeruli, the tiny filtering units inside your kidney where blood is cleaned. These diseases and conditions are called glomerular diseases and can have many different causes. Focal segmental glomerulosclerosis, or FSGS, is a type of glomerular disease and describes scarring (sclerosis) in your kidney. The scarring of FSGS only takes place in small sections of each glomerulus (filter), and only a limited number of glomeruli are damaged at first. FSGS affects both children and adults. Males are affected slightly more often than females, and it occurs more frequently in African Americans.
BHM: What causes FSGS?
Lee: FSGS is not caused by a single disease. It can have many different causes. The scarring may happen because of an infection, or drug, or a disease that affects the entire body, like diabetes, HIV infection, sickle cell disease or lupus. FSGS can also be caused by another glomerular disease that you had before you got FSGS. FSGS has different types based on the cause.
Below are the types of FSGS:Primary FSGS: This type of FSGS means that the disease happened on its own without a known or obvious cause.Secondary FSGS: This type is caused by another disease or a drug. Examples include viruses such as HIV, or drugs such as anabolic steroids that some people use to speed up their muscle growth (these are different than the steroids your doctor gives you for treatment).
Genetic FSGS: Also called “familial” FSGS, this type is caused by genetic variations.
BHM: What resources do you and NephCure offer patients and caregivers?
Lee: Related to FSGS, we had a webinar on the APOL1 gene, which is the genetic link between FSGS and African Americans of West African descent. Topics included who presents with the APOL1 gene, how to learn if one has the APOL1 gene and what are the unique factors for someone who has APOL1. African American patients may very well have this genetic factor but may be completely unaware because their health-care provider doesn’t know that this link exists and does not test for it.
NephCure has lots of programs really geared at helping patients to be activated and empowered around their disease. We have a ton of diet and nutrition information that we are adding every day. Also, we have a peer connections program where an adult male, in say San Jose, California, can connect with somebody else in New York City who has this disease, and then we can connect them both with somebody else who has signed on as a peer support volunteer.
What do African Americans in particular need to know about participation in clinical trials? And why is participation important?
Lee: It’s a fact that in clinical trials across disease states, such as cancer, cardiology and nephrology, patients are disproportionately non-Hispanic, white, men and women with higher household incomes, right? This is a fact.
I’m going to give you a “for instance.” Since 2015, in cancer trials, less than 5 percent of black patients were represented or included (in said trials) for 24 of the 31 drugs approved for use in patients that have cancer.
So why does this matter? We can’t know if drugs being tested for FSGS will work equally as well for African Americans with this genetic factor (APOL1 gene) unless African Americans participate in these trials. We will never know without African American participation in these clinical trials if these drugs will treat this unique form of FSGS caused by the APOL1 gene.
Some of these drugs could be helpful in treating this specific form of FSGS and we absolutely need African Americans living with these variations of FSGS to participate to see if, in fact, these drugs are beneficial or don’t work well.
Right now, in 2020, we are so close to getting some new medications on the market for FSGS. It’s critical that we get underrepresented populations to be part of clinical trials. We need to have the individuals most impacted participate for the potential therapeutic benefits, but also give them access to these opportunities, so that we can know how helpful these drugs will be for the African American population.
Do you think African Americans are as aware of kidney disease as they should be?
Lee: I think African Americans are well aware of kidney disease, as there seems to be a lot of familial history, but they may also feel resigned that this is destined to happen to them because, “my father or mother or uncle ended up on dialysis, so this is just something that happens in our family.” NephCure is really aiming to correct that and stress that this genetic form of kidney disease that we are learning about, APOL1, has a whole different and unique treatment approach and treatment path. These patients should have access to and should absolutely talk to their health-care providers, because this is where clinical trials are!
And this is where innovation in kidney disease is happening. So, I worry about the African American patient who walks away from their first appointment with their nephrologist with a generic chronic kidney disease diagnosis without probing to say, “We want to do a biopsy. What about getting genetically tested”? Because the whole treatment plan will change if in fact this person presents with the APOL1 as a genetic factor.
Are there things in traditional African American diets we should stay away from?
Lee: I don’t know if I would recommend anything specific to the African American population, but I do know this: A kidney-friendly diet is really important. We do know that junk in is junk out, so people who shop the perimeter of the grocery store, particularly people who follow a low-salt intake diet, minimizing fast food, fried food and high-salt foods, will likely feel better, but it also plays a role, we think, in preserving kidney function and helping the kidneys stay healthy and, well, and do their job.
What do you mean by shop the perimeter of the grocery store?
Lee: When you walk into a grocery store, in order to avoid the processed food aisles, you walk around the edges of the store where your fruit, produce and healthy, fresh vegetables are. Your canned goods and preserved foods are in the middle of the store.
What programs do you have for the second half of 2020 that our users should know about?
Lee: We have a series called NephCure U, or NephCure University. These are being held once or twice a month around kidney disease or kidney health topics. On June 8th we had a talk on nutrition. On June 25th, we had a talk geared specifically toward an African American audience. In the future, we will have one on the artificial kidney. We also do an adult support program twice a month.
What excites you about new treatment options for kidney disease on the horizon?
Lee: I’m excited about the discovery of the APOL1 gene and its relation to African Americans, because there is a chance now for huge advancement in treatment for this population just by understanding how and why they present with kidney disease. But what I am most excited about in general is the innovation in the form of clinical trials.
And most nephrologists, especially the younger ones, would say that dialysis has done a disservice to nephrology and kidney disease because everyone got sort of lazy about innovation and breakthroughs. I mean, that would never happen with cancer, right? How many clinical trials are starting every day in cancer? But with kidney disease, dialysis was so effective and perceived to be this lifesaving procedure, but it’s not an ideal one. It’s better to keep your kidneys. So, there is a lot of potential here and I like to think of us as some of the people at the epicenter who can potentially benefit everybody. We are championing innovation. That’s the name of the game. And everyone here at NephCure feels like we’re part of something bigger. And to be part of that is so meaningful.
What would you stress to someone who is newly diagnosed?
Lee: First, I would want them to seek out a specialist at NephCure.org or KidneyHealthGateway.com and click on Find a Specialist, because they really should speak with someone who specializes in this. Secondly, I would start researching clinical trial opportunities. What we know about FSGS is that it is a rapidly progressing form of disease, so if I’m newly diagnosed and I know I have a rapidly progressing form of disease, I would become really well educated about the disease and speak to my doctor about joining a study before it’s too late to get to be involved. Also, when you participate in a clinical trial, your doctors and staff are accessible. You have a number to call any time of day to talk about anything. It’s a great way to get power around your disease.
For additional information on kidney disease or FSGS, visit NephCure.