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Initiative seeks to create interventions to prevent kidney failure and improve access to kidney disease research, care for communities of color
King of Prussia, PA – March 9, 2021 – Today, NephCure Kidney International (NephCure) announced the formal launch of its Health Equity Initiative, focused on addressing access to research and care for diverse families living with chronic, protein-spilling kidney diseases, together with the Health Education Advocacy and Learning, Inc. (HEAL Collaborative) not-for-profit organization.
The goal of this initiative is to improve patient outcomes by identifying solutions to strengthen the participation of underrepresented individuals in the kidney disease patient and medical arena. The initial focus will be on kidney disease in Black Americans, given the prevalence of Chronic Kidney Disease (CKD) and Focal Segmental Glomerulosclerosis (FSGS) in this population. This initiative is made possible through grant support from Travere Therapeutics, a founding partner of the Health Equity Initiative. Additional support has been provided by Mallinckrodt Pharmaceuticals and other key partners.
“We are so eager to finally begin doing this important work,” said Joshua Tarnoff, NephCure CEO. “This community of patients has been neglected for too long. With so many new potential options available in trials, some specifically targeting genetic causes of kidney disease within Black communities, as well as the genetic testing now available to detect these variances, we now have a clear path forward to improve health outcomes for all patients.”
More than 1 in 7 adult Americans have some form of CKD. One of the most common and aggressive sub-types of CKD is FSGS, characterized by protein in the urine, kidney scarring, and having the potential to cause relatively rapid decline in kidney function. As there are currently no FDA-approved drugs for FSGS, patients may progress to kidney failure, dialysis, and kidney transplant.
CKD and FSGS disproportionally affect Black Americans at rates at least 4 times greater than White Americans. Black Americans comprise 13.2% of the United States population but represent more than 35% of all patients in the US receiving dialysis for kidney failure. In particular, a variation on the APOL1 gene often found in people of West African descent is thought to be associated with one of the most severe forms of kidney disease. Its presence indicates a significant reduction in already limited treatment options. Approximately one third of FSGS cases in the United States are thought to be associated with APOL1 variants.
A key partnership within the Health Equity Initiative will be led by HEAL Collaborative, a community-based organization that focuses on working with under-served minority populations on the availability of healthcare-related services, accessibility to emerging treatment options, and consequential community benefit impact.
“HEAL Collaborative’s vision of ‘Communities of Color are Healthy’ drives our mission: to develop healthy communities of color, we use our collaborative relationships, innovation, community action, and public advocacy,” said Howard Mosby, HEAL Collaborative co-founder and Treasurer.
“This partnership with NephCure Kidney International aligns with our organization’s goals to build collaborative networks nationally; to establish faith-based partnerships; to hold educational sessions on innovative healthcare solutions around chronic diseases affecting morbidity and mortality in communities of color; all in partnership with policymakers, faith leaders, and community advocates.”
During the 12-month pilot period of this initiative, HEAL Collaborative will engage faith-based community networks in Atlanta, GA and Chicago, IL to raise awareness of CKD and APOL1-related FSGS and provide opportunities to connect with patient advocates and disease specialists. NephCure will concurrently launch a marketing campaign to raise awareness of the genetic causes of kidney disease in people of African descent, provide patient-focused educational materials and guidance on seeking specialized care and gaining access to clinical trials, and strengthen outreach to nephrologists to aid in providing accurate and timely FSGS diagnoses.
“What makes this initiative different is our focus on creating action-oriented, meaningful, and measurable change in these communities in the near-term,” said Tarnoff. “We will take what we learn from this pilot period and expand our programs in the future to reach more at-risk individuals within communities of color.”
“We want to put interventions in place to reach people before they show up in the emergency room with kidney failure,” added Mosby. “We have said time and time again: No more dialysis. We must give people every opportunity to save their kidneys and remove dialysis from the conversation as a foregone conclusion.”
NephCure and HEAL Collaborative have appointed a steering committee of leaders with expertise in rare kidney disease research and care, government and local advocacy, and community-based engagement to guide the Health Equity Initiative.
Health Equity Steering Committee members include:
- Linda Goler Blount, MPH, Black Women’s Health Imperative
- Jason Cobb, MD, Emory University Division of Renal Medicine
- Roslyn Daniels, Black Health Matters
- Patrick O. Gee Sr., PhD, iAdvocate Inc.
- Keisha Gibson, MD, MPH, University of North Carolina
- Wanda H. Moore, JD, MEd, New Jersey Urban Peace Building Project
- Kevin Mott, NephCure Kidney International
- Quin Taylor, Tayloring Gratitude
- Melissa West, American Society of Nephrology
Both NephCure Kidney International and HEAL Collaborative are committed to long-term sustainable improvement in care for people of color living with kidney disease. This first step is one in a long series of programs and an iterative learning process, until we collectively see equal care for patients.
For partnership inquiries and to support this growing effort, please contact NephCure at research@NephCure.org.
About NephCure Kidney International
NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now nearly 30 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity. For more information, please visit www.NephCure.org.
About HEAL Collaborative
HEAL is a not-for-profit community-based organization that focuses on Educating, Informing, Advocating and Engaging under-served minority populations on the availability of healthcare-related services, accessibility to emerging treatment options, and consequential community benefit impact. For more information, please visit www.HEALCollaborative.org.
Lauren Eva, Director of Marketing & Communications
Newswise — Washington, DC (February 25, 2021) —The American Society of Nephrology (ASN) is spearheading efforts to secure direct federal allocation of COVID-19 vaccines to dialysis patients and frontline dialysis workers. This allocation would improve access for a vulnerable patient population, more than half of whom are Black, Hispanic, Asian, Native American, and Native Hawaiian or other Pacific Islanders (NHPIs).
Forty-five organizations are urging the Biden-Harris Administration to address this public health crisis by facilitating COVID-19 vaccine allocation to all dialysis patients and frontline health workers in dialysis units.
“Today we are urgently calling on the Biden-Harris Administration to provide a federal allocation of COVID-19 vaccine for people with kidney failure receiving dialysis and for the frontline healthcare workers in the dialysis facilities. Patients with kidney failure are some of the most vulnerable to COVID due to their many co-morbidities. Kidney diseases and COVID both disproportionately impact people of color, so a direct vaccine allocation would both save lives and address racial injustice at the same time. This is a critical moment in this public health battle, and people receiving dialysis need this commitment to healthcare and equity said,”. Susan E. Quaggin, MD, FRCP(C), FASN, President, ASN.
People on dialysis need urgent access to COVID-19 vaccines
- People on dialysis are extremely susceptible to the effects of COVID-19, with COVID-associated mortality exceeding 20%, comparable to or even higher than COVID-associated mortality in long-term care facilities. (1)
- Ninety percent of dialysis patients receive in-center treatment three times a week for three to four hours each day. Since mid-November 2020, the kidney care community has been prepared to distribute and administer COVID-19 vaccinations quickly and safely.
- Most patients on dialysis have multiple co-morbidities, are more vulnerable to infection, and are unable to safely go to a separate vaccination center or pharmacy and wait in line. Dialysis organizations are highly experienced vaccinating patients for seasonal flu and are prepared to vaccinate patients for COVID-19 at this time.
- Providing a direct federal allocation of COVID-19 to dialysis centers enhances trust and confidence in the safety and efficacy of the vaccine, as it will be delivered in a known environment by healthcare professionals with whom patients have longstanding relationships of trust.
In advance of this much-needed allocation, the 45 organizations also encouraged the federal government to urge states to prioritize dialysis patients and staff in their vaccine allocation protocols.
COVID-19 and health equity are paramount issues affecting Americans with kidney diseases and the health professionals who care for them. Tackling these challenges will help improve the health of all Americans.
Read the full letter here.
(1) Sim JJ, et al. COVID-19 and survival in maintenance dialysis. Kidney doi: 10.1016/j. xkme.2020.11.005;
In celebration and recognition of National Kidney Month, we’re devoting this period to sharing stories, research news, and educational opportunities specifically for communities of color and other diverse and underrepresented groups who are affected by rare, protein-spilling kidney diseases. Our focus now and always is on keeping kidneys healthy for all the members of our rare disease community.
Don’t miss these upcoming events:
- Thursday, March 4 at 7pm ET: “Rare Kidney Disease Requires Rare Expertise” – In partnership with Black Health Matters and with support from Travere Therapeutics
- Thursday, March 25 at 7pm ET: “Living Your Best Life with FSGS Kidney Disease” – In partnership with Black Health Matters and with support from Travere Therapeutics
Check out some patient stories:
- Aries Merritt – Overcoming Hurdles
- Briana’s Journey with FSGS
- Finding the Beauty in Kidney Disease: Keyaira’s Story
- Fourth Doctor is the Charm: Kevin’s Journey to the Correct Diagnosis
- Sabrina’s Journey with Minimal Change Disease
- Stephanie’s Journey with Nephrotic Syndrome
Get up to speed on the latest education, research, and commentary:
- An Inside Look: Vertex’s Study in APOL1-FSGS
- APOL1 FSGS Kidney Disease Fact Sheet
- Ask the Expert: Dr. Rasheed Gbadegesin
- The Genetic FSGS Discovery Trailblazing Possible Kidney Disease Treatment
- NephCure U: APOL1 with Dr. Jeffrey Kopp
Make sure to visit our Facebook page to see more resources and information, including our “The Doctor is In” social media campaign.
March is National Kidney Month. We’re focused on keeping kidneys healthy for all.
NephCure’s Nurse Kristen Hood and Kylie Winkler discuss Travere’s Therapeutics achievement of interim proteinuria endpoint in the ongoing Phase 3 DUPLEX study of Sparsentan in Focal Segmental Glomerulosclerosis (FSGS).
Learn more about the trial currently underway, why this is such a crucial step for patients with rare kidney diseases, and what potential treatments this could lead to in just a few short years! Read the full press release here.
Come Sunday, many of us will be gathered around the television watching the Tampa Bay Buccaneers and the Kansas City Chiefs battle it out in Super Bowl LV. Whether you’re there for the football or just for the snacks, we have you covered with a delicious, low-sodium game-day meal your entire family will love.
We’ve previously introduced you to Chef Sachet, a private chef based out of Detroit whose son was diagnosed with FSGS. This recipe follows a low-sodium diet. Her Super Bowl Turkey Chili recipe is below. To check out her other recipes, click here.
Super Bowl Turkey Chili (Low-Sodium)
Prep Time: 30 minutes
Cook time: 2 hours
- 1 sweet onion, diced
- 1 green bell pepper, diced
- 4 garlic cloves, minced
- ½ jalapeño, minced
- 2 lbs. lean ground turkey, cooked and drained
- 14 oz or 1 large no salt added can stew tomatoes
- 1 ½ tbsp ground cumin
- 1 tbsp paprika
- 1 tbsp chili powder
- 1 tbsp black pepper
- 1 cup cheddar cheese
- ½ cup chopped green onions
- For more spice, add jalapeño (optional)
- Sauté onion, garlic, bell pepper and jalapeño in 2 tbsp olive oil remove from pot.
- Cook ground turkey and drain excess fat, add back to pot with sauteed vegetables.
- Add cumin, paprika, chili powder and pepper sauté for 10 minutes.
- Add tomatoes and let cook for 1 ½ on simmer or low heat.
- Once thickened and flavorful, serve with your choice of toppings!
- For a real diet recipe, add chopped zucchini or squash instead of beans. They provide the same rich flavor without the phosphorus or potassium content.
- Cheese is high in phosphorus, if you are on a renal diet due to ESRD or Dialysis, feel free to omit the cheese from this recipe.
- Tomatoes are high in potassium, if you are on a full renal diet, you can leech fresh tomatoes and stew them on your own.
We encourage you to talk with your doctor regarding what diet and nutritional guide is best for you to follow.
NephCure Specialist, Dr. Rasheed Gbadegesin, MD, MBBS, responds to our questions regarding genetic testing. Dr. Gbadegesin is a pediatric nephrologist at Duke University Medical Center. He is also a professor of pediatrics and professor in medicine, focusing his studies on molecular genetics of glomerular disease and genetic risk factors for childhood onset idiopathic Nephrotic Syndrome.
“Why should I seek genetic testing?
Nephrotic Syndrome and other rare kidney diseases are common causes of human suffering in the United States and all over the world. Nephrotic Syndrome is seen in all age groups, but it is more common in children. Nephrotic Syndrome is divided into steroid sensitive nephrotic syndrome (SSNS) and steroid resistant nephrotic syndrome (SRNS) based on response to steroid treatment. Most patients with SSNS will have excellent outcomes, while those with SRNS who are also unresponsive to other treatments may develop progressive kidney damage that will ultimately require dialysis and kidney transplantation.
The cause of Nephrotic Syndrome and other kidney diseases is unknown in majority of cases. However, with the mapping of the Human Genetic Code and the development of tools to read the codes, we are now learning more about the potential causes of Nephrotic Syndrome and other kidney diseases.
Using Nephrotic Syndrome as an example, we now know that a significant proportion of SRNS type are due to defects in one of 70 genes. A study from Columbia University, and other studies from the US, Canada, and Europe, showed that up to 10% of kidney disease patients with kidney disease of unknown cause have defects in one of these 70 genes and other kidney diseases genes. In addition, some genetic factors have been associated with high risk of developing kidney disease, a very good example is the association between variants in the APOL1 gene and high risk of kidney diseases in people of African ancestry.
These findings are very exciting and will most likely lead to early and accurate diagnosis of different kidney diseases. They may also facilitate the identification of other diseases that may be associated with genetic kidney diseases, for example, hearing loss in people with defects in COL4A5 genes and early onset diabetes in patients with HNF1B gene defects.
“Who should seek genetic testing? When in my journey is it appropriate to do so?”
The simple answer is that genetic testing should be offered to those who are suspected of having genetic kidney disease, and testing should be done as soon as the diagnosis is made. For example, patients with steroid resistant nephrotic syndrome (SRNS), especially if it is associated with a history of kidney diseases in other family members, should undergo appropriate genetic testing without any delay. This approach is very important because early diagnosis of genetic SRNS will facilitate 1) tailored use of medications to reduce side effects and toxicity, 2) use of appropriate medications that are directed towards the specific genetic defect, 3) precise discussion with patients and family members on what to expect short and long term, 4) putting in place measures to prevent or slow rate of kidney damage, and 5) safe planning and timing of kidney transplantation if needed.
In conclusion, genetic testing should be widely available to patients with suspected genetic kidney disease. The genetic data should be discussed with family members and experts in genetic kidney disease for accurate interpretation of results. The information from the genetic testing should be studied carefully to improve the short- and long-term outcome for the patient and other family members.
If you would like to learn more about genetic testing, talk to your nephrologist and ask about the steps necessary to obtain approval from your insurance. It is important to also seek genetic counseling once the genetic testing comes back. If you are having trouble getting genetic testing approved through your insurance or your doctor is not keen on obtaining these tests, click here to learn more about obtaining your genetic testing for free through various studies or organizations.
Do you or your loved one suffer from Membranous Nephropathy? We are here for you.
Membranous Nephropathy (MN) is a rare kidney disease characterized by thickening in the part of the kidney that filters blood: the glomerular basement membrane. The thicker membrane does not work normally and causes protein that belongs in the blood to be spilled into the urine.
Symptoms of Membranous Nephropathy include:
- Swelling (edema) in eyes, hands, feet, and abdomen
- Foamy or bubbly urine, caused by protein spilling into urine (proteinuria)
- Can cause high blood pressure (hypertension) and high fat levels in the blood (high cholesterol)
- Low levels of protein in the blood (hypoalbuminemia)
Below are resources we’ve complied that might be useful for you:
This double-sided informational flyer on Membranous Nephropathy breaks down the basics and helps you better understand the journey you may face. It also highlights was to treat your disease and how to live with it. To download the full informational sheet, click here.
In September 2020, we hosted a NephCure U session specifically on Membranous Nephropathy. Dr. J. Ashley Jefferson from the University of Washington lead, “Membranous Nephropathy and You,” and discussed more on the diagnosis, treatment options, and clinical trials. Listen in on the hour-long educational webinar below.
Later this year, on August 27, 2021 from 10am-3pm ET, NephCure and the National Kidney Foundation will host an Externally Led Patient-Focused Drug Development (EL-PFDD) meeting specifically on Membranous Nephropathy. What are EL-PFDD meetings? They bring together patients and care partners, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. The goal is to hear from patients who have the disease, in order for the FDA and pharmaceutical companies to understand the patient experience. You participation is critical. Last year, we hosted an EL-PFDD about focal segmental glomerulosclerosis (FSGS). To watch the recording, click here. Please keep a look out for more information on this meeting as it becomes available. Until then, if you have any questions, please reach out to Kelly Helm at email@example.com.
In addition to these resources, there are also clinical trials available for Membranous Nephropathy patients. These trials are the only way scientists will be able to find a new, potential treatment options specifically for Membranous Nephropathy patients. Patients, like you and your loved ones, play an extremely crucial role. Check out some pre-screener questions below, provided by MorphoSys, a pharmaceutical company leading one of these MN studies, to see if their clinical trial, M-PLACE, could be a fit for you or your loved one.
- Are you between 18-80 years old?
- Have you already been diagnosed with Anti-PLA2R Antibody Positive Membranous Nephropathy (aMN)?
- Have you ever had a kidney biopsy? If yes, was the biopsy acquired performed within the last 5 years?
- Please confirm that you are currently not receiving dialysis.
- Are you currently taking blood pressure, blood thinner, or diuretic medications?
- Would you be willing to participate in a clinical trial?
To learn more about MorphoSys’ clinical trial, click here. If you meet the criteria listed above, find the location closest to you and click the “I’m Interested” button to get in touch with an investigator.
You can find a full list of clinical trials for all protein-spilling kidney diseases on KidneyHealthGateway.com.
A new educational resource is available for FSGS patients worldwide. We are proud to collaborate with WebMD/Medscape to make focal segmental glomerulosclerosis (FSGS) available as a program on the WebMD website. You can check out the brand-new information here.
Within this program, you can test your FSGS knowledge, learn more about the causes of the rare protein-spilling kidney diseases, and find out about the treatment options that are available—including a deeper dive into clinical trials.
This resource also includes a video from NephCure Board Member and NephCure Specialist, Dr. Kirk Campbell. He shares his expertise on the treatment options for those suffering from FSGS and breaks down the importance of enrolling in a clinical trial.
We encourage you to take a look at this program on WebMD and share with family and friends to help shed light on you or your loved one’s medical condition.
This program was supported by an independent educational grant from Travere Therapeutics. To learn even more about FSGS and treatment options, click here.