Final NephCure Kidney Network Data Snapshot

August 2, 2018 by Chelsey Fix

Since 2014, NephCure Kidney International (informally called NephCure) enthusiastically collected your survey responses in a systematic and safe way to help researchers and doctors better understand Nephrotic Syndrome, FSGS, and related diseases. Over the past few years, we have released annual reports about the trends of diagnosis patterns, treatment options, and your opinions about research and clinical trials. In addition, through our participation in larger networks of data (thanks to our involvement in PCORnet), we learned about electronic health record access for Nephrotic Syndrome patients, sleep habits, and potential mobile app use.

We are pleased to release the final Annual Report, which includes data collected over a 13-month period between 2017 and 2018. While the NephCure Kidney Network Patient Registry is no longer open to registrants, the data will be available for researchers to study for the next 3 years (should they be approved by a patient-centric committee for data access).

If you have any questions about the NKN Patient Registry, please email registry@nephcure.org.

The FIRSTx Clinical Trial

May 18, 2018 by Chelsey Fix

About the FIRSTx Clinical Trial

FIRSTx is a Phase 2 study testing the safety and effectiveness of an investigational drug called CXA-10 designed to treat FSGS without steroids. This study will see if CXA-10 can reduce proteinuria while maintaining stable kidney function in people with FSGS. Throughout the course of the study, researchers will measure how different doses of CXA-10 impact proteinuria and carefully evaluate the kidney related and other effects of CXA-10. The study is taking place at approximately 20 centers across the United States.

How To Contact a Study Center:

About CXA-10

Animal studies suggest that CXA-10 appears to work by reducing inflammation in the glomeruli and helping to prevent scarring. CXA-10 has been evaluated in healthy volunteers. CXA-10 will be provided to study participants in the form of a pill taken once a day in the morning with food.

Learn more about The FirstX Clinical Trial by clicking here.

Click here to learn more about research and clinical trials

Check out recent Research News

Genetic Research into FSGS and Nephrotic Syndrome: an Update from the Pollak Lab

December 3, 2017 by Chelsey Fix

An Update from the Pollak Lab
By Andrea Knob

We first checked in with the Pollak Lab and Andrea Knob—a genetic counselor and clinical research coordinator—about a year ago. Below is an update of their work, which receives funding from NephCure to study genetic causes of kidney diseases like FSGS and Nephrotic Syndrome. Patients and family members affected by FSGS and Nephrotic Syndrome are invited to participate in the Pollak Lab’s research. Please contact Andrea for more information.

Andrea:
As the holiday season approaches, we want to express our gratitude for the support of all of our patients and families, nephrology providers, and support networks including NephCure in the challenge to fight kidney disease. In the Pollak lab, we are working hard to identify and understand the genetic factors that may be contributing to the cause of kidney diseases such as FSGS (focal segmental glomerulosclerosis), Nephrotic Syndrome, unexplained proteinuria, and unexplained kidney failure in individuals and in families. We hope that by learning more about what causes these conditions, we can eventually help scientists discover better treatments with less side effects in the future.

Researchers in the Pollak Lab

Technology has been significantly improving over the years, and so has access to these technologies. We are able to look at genes and different variations of genes and study them in ways that were unimaginable decades ago. Genes (which we can think of as the “words” within DNA) are the instructions for the body to carry out its functions and give rise to traits. We look at genes related to the kidney in order to see if the instructions are what we expect or if there is variation. From there, we want to know whether a genetic variant is a normal part of the diversity from person to person or whether the genetic variant might be giving incorrect instructions for the kidney to function as it should.

The Pollak Lab is looking for patients and healthy family members to participate in their ongoing study. You can participate from anywhere in the world!

Here at the Pollak lab, we have identified genetic variants (mutations) that we know are associated with kidney diseases such as FSGS, Nephrotic Syndrome, and related conditions. We have done a lot of work with genes such as ACTN4, NPHS2, TRPC6, INF2, and APOL1, for example. We want to know more about these genes and how they work, but we also think that there are other genetic mutations to be discovered.

Current genetic technologies allow us to study the actual genes, but we know that the stories from patients and families experiencing kidney disease is truly at the heart of the answers that we are seeking. If someone has a particular gene variant, what does that mean for that person? What are their exact symptoms? Do other people with the same gene variant have similar symptoms? What treatments have worked or have not worked? What additional factors (genetic, environmental, lifestyle) may be accounting for the differences from person to person and/or family to family?

To answer those questions, we have to rely on the generous contributions of time, information, and personal stories from patients, families, and providers which helps us to understand kidney disease in new ways and helps us to develop new ideas and strategies aimed at prevention, diagnosis, and treatment. We are truly indebted to all who have participated in our research this year and in the past, for without your generosity, we would not be able to do the work we do.

Andrea Knob—Genetic Counselor and Study Coordinator for Dr. Pollak’s study

We also invite anyone to participate in our ongoing research, and we hope to team up with providers who care for individuals and/or families with FSGS, Nephrotic Syndrome, unexplained proteinuria, and/or kidney failure. We hope to continue our collaborative efforts and reach out to communities nationwide.

We invite you to contact us at any time whether you are a patient, family member, or friend looking to learn more about our research, a previous research participant following up with updated medical, family history, and/or contact information, or a nephrology provider interested in referring a patient(s) and/or collaborating. Our study is very simple and can be completed from home. To learn more about us, you can contact us by phone at 617-667-0467, by email at aknob@bidmc.harvard.edu, or visit our website by clicking here.

Advocacy Alert: Oppose Tax Reform

November 27, 2017 by Chelsey Fix

Advocacy Alert: Your Action Needed

Tell your Members of Congress to oppose tax reform provisions that harm individuals and families facing rare or chronic medical conditions

Take Action Now

Congress is currently working on a comprehensive overhaul of the U.S. tax code. The House has already passed a measure and the Senate hopes to consider its proposal early in December. The goal is for both chambers to pass their own bills before going to a conference to negotiate a final proposal. At this time, both the House and Senate tax reform bills include provisions that would harm those affected by rare and/or chronic medical conditions:

House Bill

Eliminates the Orphan Drug Tax Credit and provides no new alternative to continue to incentivize and facilitate the development of therapies for rare diseases.
Eliminates the Deduction for Medical Expenses which many patients and their families claim to help offset the costs of medical care.

Senate Bill

Eliminates Affordable Care Act’s individual mandate to purchase insurance and the Congressional Budget Office has estimated that this action will result in 13 million Americans losing health coverage.
- With fewer Americans (especially healthy individuals) buying into the insurance market, costs for insurance could drastically increase as the market becomes flooded with individuals that use health insurance frequently
Drastically restructures the Orphan Drug Tax Credit to make it much less generous and applicable in a way that would drastically reduce rare disease therapy development.

As Congress continues to consider tax reform, and which provisions will be included in any final measures, please contact your Senators and House Representative and ask them to oppose provisions undermining the Orphan Drug Tax Credit, the Medical Expense Deduction, and the individual mandate.

How To Take Action:

Visit www.senate.gov and identify the contact information for your two Senators by selecting your state.
- Use the contact information for the DC office, which will include a phone number starting with 202
Visit www.house.gov and identify the contact information for your House Representative by entering your zip code in the upper right corner.
Call the offices and ask for the Health Legislative Assistant’s voicemail box or e-mail address.
Use the script below to leave or send a message.

Script for email or phone calls:

Dear _______,

My name is _________ and I am a constituent from [home town]. As the legislative process for tax reform continues to move forward, please oppose any provisions eliminating or diminishing the Orphan Drug Tax Credit, the Medical Expense Deduction, and the individual mandate to purchase insurance. As an advocate for patients and commonsense tax policy, the aforementioned provisions are essential to maintaining medical innovation and promoting comprehensive care.

[Explain a little about your particular situation]

Thank you for time and for your consideration of my request.

Sincerely,

[Name]
[Address]

Advocacy Alert: Action Required

September 20, 2017 by Chelsey Fix

Advocacy Alert: Action Required

Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) recently introduced legislation known as Graham-Cassidy to repeal and replace the Affordable Care Act (ACA). The hope of these lawmakers was to hold yet another vote on repeal before October 1^st, so a simple majority (51 votes) is all that is needed to pass the measure.

Unfortunately, the Graham-Cassidy proposal is more extreme than other recent Senate proposals and would be particularly harmful to individuals and families impacted by chronic health conditions. Specifically, the new proposal would:

Allow insurance companies to charge more for those individuals with pre-existing health conditions
Allow states to more easily opt out of requiring quality health insurance options and comprehensive benefits
Expand the ability for individuals to purchase low quality health insurance benefits in lieu of more comprehensive coverage
Eliminate the individual and employer mandates
Dramatically reduce the federal commitment to Medicaid expansion
Eliminate the Prevention and Public Health Fund

While this effort was initially dismissed by many as a “Hail Mary,” it has quickly gained support and could be voted on next week. In order to protect patients with chronic conditions, please contact your Senators and ask them to oppose the Graham-Cassidy repeal and replace proposal.

Take Action

Contact the health Legislative Assistants (LAs) in the offices of your two U.S. Senators and use the message below for a voicemail or brief e-mail. The contact information for your Senate offices can be found at Senate.gov.

Template For Emailing / Calling / Faxing Your Senators

Dear _______,

My name is _________ and I am a constituent from [home town]. On behalf of patients with chronic health conditions, I urge the Senator to oppose the Graham-Cassidy healthcare proposal. This proposal would be absolutely devastating to individuals and families affected by chronic illness that rely on access to quality, affordable health care.

[Explain a little about your particular situation]

Thank you for your consideration of my request. Please tell me how you have responded to my request.

Sincerely,
[Name]
[Address]

Summer Research Roundup

July 21, 2017 by Chelsey Fix

Summer Research Roundup

Summer is a great time to catch up on reading! If you’re sick of beach novels or historical biographies, consider catching up on science reading with our pick of recently published articles.

We combed through the literature and found some interesting and relevant publications that may be relevant to Nephrotic Syndrome patients and families. The articles are listed in no particular order, and we do not endorse or prefer any of the research studies.

Enjoy!

A tripartite complex of suPAR, APOL1 risk variants and αvβ3 integrin on podocytes mediates chronic kidney disease.

Authors:
Hayek SS, Koh KH, Grams ME, Wei C, Ko YA, Li J, Samelko B, Lee H, Dande RR, Lee HW, Hahm E, Peev V, Tracy M, Tardi NJ, Gupta V, Altintas MM, Garborcauskas G, Stojanovic N, Winkler CA, Lipkowitz MS, Tin A, Inker LA, Levey AS, Zeier M, Freedman BI, Kopp JB, Skorecki K, Coresh J, Quyyumi AA, Sever S, Reiser J.

Dr. Reiser, a previous NKI grant recipient and Scientific Advisory Board Member, was a major contributor to this research

Abstract:
Soluble urokinase plasminogen activator receptor (suPAR) independently predicts chronic kidney disease (CKD) incidence and progression. Apolipoprotein L1 (APOL1) gene variants G1 and G2, but not the reference allele (G0), are associated with an increased risk of CKD in individuals of recent African ancestry. Here we show in two large, unrelated cohorts that decline in kidney function associated with APOL1 risk variants was dependent on plasma suPAR levels: APOL1-related risk was attenuated in patients with lower suPAR, and strengthened in those with higher suPAR levels. Mechanistically, surface plasmon resonance studies identified high-affinity interactions between suPAR, APOL1 and αvβ3 integrin, whereby APOL1 protein variants G1 and G2 exhibited higher affinity for suPAR-activated avb3 integrin than APOL1 G0. APOL1 G1 or G2 augments αvβ3 integrin activation and causes proteinuria in mice in a suPAR-dependent manner. The synergy of circulating factor suPAR and APOL1 G1 or G2 on αvβ3 integrin activation is a mechanism for CKD.

Full article:
Published in Nature Medicine and accessible here.

Long-Term Outcomes in Children with Steroid-Resistant Nephrotic Syndrome Treated with Calcineurin Inhibitors

Authors:
Nathan T. Beins and Katherine M. Dell

Abstract:
Steroid-resistant nephrotic syndrome (SRNS) is an important cause of chronic kidney disease (CKD) in children that often progresses to end-stage renal disease (ESRD). Calcineurin inhibitors (CNIs) have been shown to be effective in inducing short-term remission in some patients with SRNS. However, there are little data examining their long-term impact on ESRD progression rates. We performed a retrospective chart review of all patients treated for SRNS with CNIs at our institution from 1995 to 2013. Data collected including demographics, initial response to medical therapy, number of relapses, progression to ESRD, and treatment complications. A total of 16 patients met inclusion criteria with a mean follow-up of 6.6 years (range 0.6–17.6 years). Histopathological diagnoses were focal segmental glomerulosclerosis (8), mesangial proliferative glomerulonephritis (4), IgM nephropathy (3), and minimal change disease (1). Three patients (18.8%) were unresponsive to CNIs while the remaining 13 (81.2%) achieved remission with CNI therapy. Six patients (37.5%) progressed to ESRD during the study period, three of whom did so after initially responding to CNI therapy. Renal survival rates were 87, 71, and 57% at 2, 5, and 10 years, respectively. Non-Caucasian ethnicity was associated with progression to ESRD. Finally, a higher number of acute kidney injury (AKI) episodes were associated with a lower final estimated glomerular filtration rate. Despite the majority of SRNS patients initially responding to CNI therapy, a significant percentage still progressed to ESRD despite achieving short-term remission. Recurrent episodes of AKI may be associated with progression of CKD in patients with SRNS.

Full Article:
Published in Frontiers in Pediatrics and available here

Optimal management of primary focal segmental glomerulosclerosis in adults.

Authors:
Séverine Beaudreuil, Hans Kristian Lorenzo, Michele Elias, Erika Nnang Obada, Bernard
Charpentier, and Antoine Durrbach

Abstract:
Focal segmental glomerulosclerosis (FSGS) is a frequent glomerular kidney disease that is revealed by proteinuria or even nephrotic syndrome. A diagnosis can be established from a kidney biopsy that shows focal and segmental glomerulosclerosis. This histopathological lesion may be caused by a primary podocyte injury (idiopathic FSGS) but is also associated with other pathologies (secondary FSGS). The first-line treatment for idiopathic FSGS with nephrotic syndrome is a prolonged course of corticosteroids. However, steroid resistance or steroid dependence is frequent, and despite intensified immunosuppressive treatment, FSGS can lead to end-stage renal failure. In addition, in some cases, FSGS can recur on a graft after kidney transplantation: an unidentified circulating factor may be implicated. Understanding of its physiopathology is unclear, and it remains an important challenge for the scientific community to identify a specific diagnostic biomarker and to develop specific therapeutics. This study reviews the treatment of primary FSGS and the recurrence of FSGS after kidney transplantation in adults.

Full Article:
Published in International Journal of Nephrology and Renovascular Diseases and available here

Recent Treatment Advances and New Trials in Adult Nephrotic Syndrome

Authors:
Eva Königshausen and Lorenz Sellin

Abstract:
The etiology of nephrotic syndrome is complex and ranges from primary glomerulonephritis to secondary forms. Patients with nephrotic syndrome often need immunosuppressive treatment with its side effects and may progress to end stage renal disease. This review focuses on recent advances in the treatment of primary causes of nephrotic syndrome (idiopathic membranous nephropathy (iMN), minimal change disease (MCD), and focal segmental glomerulosclerosis (FSGS)) since the publication of the KDIGO guidelines in 2012. Current treatment recommendations are mostly based on randomized controlled trials (RCTs) in children, small RCTs, or case series in adults. Recently, only a few new RCTs have been published, such as the Gemritux trial evaluating rituximab treatment versus supportive antiproteinuric and antihypertensive therapy in iMN. Many RCTs are ongoing for iMN, MCD, and FSGS that will provide further information on the effectiveness of different treatment options for the causative disease. In addition to reviewing recent clinical studies, we provide insight into potential new targets for the treatment of nephrotic syndrome from recent basic science publications.

Full Article:
Published in BioMed Research International and available here

Autoimmune Thyroiditis and Glomerulopathies

Authors:
Santoro D, Vadalà C, Siligato R, Buemi M, Benvenga S.

Abstract:
Autoimmune thyroiditis (AIT) is generally associated with hypothyroidism. It affects ~2% of the female population and 0.2% of the male population. The evidence of thyroid function- and thyroid autoantibody-unrelated microproteinuria in almost half of patients with AIT and sometimes heavy proteinuria as in the nephrotic syndrome point to a link of AIT with renal disease. The most common renal diseases observed in AIT are membranous nephropathy, membranoproliferative glomerulonephritis, minimal change disease, IgA nephropathy, focal segmental glomerulosclerosis, antineutrophil cytoplasmic autoantibody (ANCA) vasculitis, and amyloidosis. Different hypotheses have been put forward regarding the relationship between AIT and glomerulopathies, and several potential mechanisms for this association have been considered. Glomerular deposition of immunocomplexes of thyroglobulin and autoantibodies as well as the impaired immune tolerance for megalin (a thyrotropin-regulated glycoprotein expressed on thyroid cells) are the most probable mechanisms. Cross-reactivity between antigens in the setting of genetic predisposition has been considered as a potential mechanism that links the described association between ANCA vasculitis and AIT.

Full Article:
Published in Frontiers in Endocrinology and available here

New insights into the pathogenesis of IgA nephropathy

Authors:
Yeo SC, Cheung CK, Barratt J

Abstract:
IgA nephropathy is the most common form of glomerulonephritis in many parts of the world and remains an important cause of end-stage renal disease. Current evidence suggests that IgA nephropathy is not due to a single pathogenic insult, but rather the result of multiple sequential pathogenic “hits”. An abnormally increased level of circulating poorly O-galactosylated IgA1 and the production of O-glycan-specific antibodies leads to the formation of IgA1-containing immune complexes, and their subsequent mesangial deposition results in inflammation and glomerular injury. While this general framework has formed the foundation of our current understanding of the pathogenesis of IgA nephropathy, much work is ongoing to try to precisely define the genetic, epigenetic, immunological, and molecular basis of IgA nephropathy. In particular, the precise origin of poorly O-galactosylated IgA1 and the inciting factors for the production of O-glycan-specific antibodies continue to be intensely evaluated. The mechanisms responsible for mesangial IgA1 deposition and subsequent renal injury also remain incompletely understood. In this review, we summarize the current understanding of the key steps involved in the pathogenesis of IgA nephropathy. It is hoped that further advances in our understanding of this common glomerulonephritis will lead to novel diagnostic and prognostic biomarkers, and targeted therapies to ameliorate disease progression.

Full Article:
Published in Pediatric Nephrology and available here.

Ask your Senators to vote NO on the revised Senate health reform bill

July 17, 2017 by Chelsey Fix

ADVOCACY ALERT: ACTION REQUIRED
Ask your Senators to vote NO on the revised Senate health reform bill

The Senate recently released a revised version of its healthcare reform bill entitled The Better Care Reconciliation Act (BCRA). This bill, like the House version, proposes state waivers, continuous coverage penalties, and deep cuts to Medicaid that would harm patients with costly and chronic health conditions. David O. Barbe, M.D., President of the American Medical Association, stated that “the revised bill does not address the key concerns of physicians and patients regarding proposed Medicaid cuts and inadequate subsidies that will result in millions of Americans losing health insurance coverage.”

This version of the BCRA adds an amendment from Senator Ted Cruz that would allow insurers to offer plans that do not meet Essential Health Benefits requirements, as long as these insurers offer at least one plan that does. Chris Hansen, President of the American Cancer Society Cancer Action Network, stated that the amendment and the bill as it stands would “leave patients and those with pre-existing conditions paying more for less coverage and would substantially erode the progress our nation has been trying to make in providing affordable, adequate, and meaningful coverage to all Americans.”

This bill harms patients with chronic and complex illnesses in the following ways:

Allows insurers to offer less comprehensive policies through a provision that allows states to waive the federal mandate on Essential Health Benefits
Includes an amendment that would allow insurers to offer low quality health insurance benefits in place of comprehensive benefits under current law
Allows states that seek and receive waivers to opt out of limits on patient out-of-pocket costs and annual/lifetime caps
Contains a continuous coverage requirement, which would charge a penalty to individuals with a gap in their insurance coverage
Ends Medicaid expansion, leaving millions of the most vulnerable individuals without critical care.

The Congressional Budget Office (CBO) is anticipated to release its analysis of the bill by Monday, and a vote on the bill could take place anytime before the Congressional recess in August.

Take Action:

Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper right corner.
Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below.
Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns.
If you would like to do more, you can request a brief meeting with the staff at your Senators’ local offices (the location office information is on their websites).

Template For Emailing Your Senators

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for (your health condition). I write to urge you to vote NO on the Senate’s healthcare bill.

The Senate healthcare bill would:

Jeopardize patient access to quality, affordable & available coverage
Cut-off health coverage for millions of Americans
Bring back annual and lifetime caps on coverage
Price people with pre-existing conditions out of the insurance market

I write to urge you to maintain stability for chronic disease patients as you and your colleagues consider healthcare reform. It is my hope that you and your colleagues in the Senate will preserve key patient protections and respect the circumstances of those combatting chronic and costly illnesses.

Specifically, please ensure any Senate proposal:

maintains essential health benefits
prohibits pre-existing condition discrimination
prohibits lifetime and annual caps on benefits
limits out-of-pocket costs for patients in a meaningful way
allows young adults to stay on family coverage until they are 26

[Add a paragraph of brief information about your condition. Tell your story.]

Patients need a transparent, bipartisan effort to stabilize the insurance market, bring down premiums, and retain the patient protections that are so critical to patients, consumers and their families. We urge the Senate to go back to the drawing board, and work together to find ways to protect patients with serious illness.

Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request.

Sincerely,

[Name]
[Address]

Advocacy Alert: Action Required!

June 30, 2017 by Chelsey Fix

ACTION ALERT
Ask your Senators to Vote NO on the Senate Healthcare Repeal Bill

Last week, the Senate released their version of health reform legislation entitled The Better Care Reconciliation Act (BCRA). The bill was slated for a vote this week but, after fierce opposition from the public health community, the vote has been postponed until after the July 4^th recess. The bill is expected to undergo some changes in order to gain the support of Senators that have thus far withheld support of the measure.

The bill, while seeking to reduce insurance premiums and provide coverage options to individuals with high healthcare costs, harms patients in the following ways:

Limits care for people with pre-existing conditions by allowing insurers to offer less comprehensive policies through a provision that allows states to waive the federal mandate on essential health benefits. While insurers will still be required to cover individuals with pre-existing conditions, these individuals may not have all their treatments and services covered.
Decreases insurance coverage by allowing states to seek and receive waivers to opt out of limits on patient out-of-pocket costs and annual/lifetime caps.
Contains a continuous coverage requirement, which would charge a penalty to individuals with a gap in their insurance coverage.
Increases costs for older Americans. Insurers would be allowed to charge older Americans five times more than younger Americans for the same coverage.
Ends Medicaid expansion, leaving millions of the most vulnerable individuals without critical care.

The Congressional Budget Office (CBO) has stated that the BCRA would cause:

15 million more people to be uninsured next year.
In ten years, that number would grow to 22 million people uninsured.
Patient out-of-pocket expenditures to rise dramatically, especially for people in states that opt for Essential Health Benefits waivers.
The prohibitions on annual and lifetime benefit caps could be eliminated in states that opt for Essential Health Benefits waivers.

Now is the time to weigh in with your Senators and make sure they oppose the BCRA as currently proposed and make sure they go back to the drawing board and work together to find ways to protect patients with chronic and costly medical conditions.

Take Action:

Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper right corner.
Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template found here.
Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns.
If you would like to do more, you can request a brief meeting with the staff at your Senators’ local offices (the location office information is on their websites).

Advocacy Alert! Ask Your Senator to Support FSGS Research Funding

May 12, 2017 by Chelsey Fix

Advocacy Alert! Ask Your Senator to Support FSGS Research Funding

Ask your Senator to to sign on to Senator Stabenow’s letter requesting that FSGS be eligible for research funding under the Department of Defense’s Peer Reviewed Medical Research Program for fiscal year 2018

Background

Each year, the United States Senate crafts an annual Department of Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). In order for a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and in order for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. (You)

As a result of grassroots outreach, the Senate has recognized FSGS as a condition eligible for study annually for a number of years. This support allows FSGS researchers to compete for nearly $278 million in federal research funding each year. You can read about FSGS researchers that received funding for projects through this program here.

Take Action

Secure the contact information for your Senator by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper left corner of the page.
Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below. If you call, you can use the template as a guide in your conversation.
Politely and occasionally follow up on the request. You should have an expectation that the office will respond to your specific concerns.

Email Template

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for the Focal Segmental Glomerulosclerosis (FSGS) community. FSGS is a rare and devastating disease that attacks the kidney’s filtering units (glomeruli), causing serious scarring, which often leads to permanent kidney damage and even failure. FSGS is a leading cause of end-stage renal disease (ESRD), kidney dialysis, and transplantation. FSGS is disabling, potentially fatal, and treatment options remain limited for affected individuals.

Please join Senator Debbie Stabenow in requesting that Focal Segmental Glomerulosclerosis (FSGS) be listed as a condition eligible for study through the Department of Defense’s Peer- Reviewed Medical Research Program, and encouraging continued research at the National Institutes of Health (NIH) during consideration of fiscal year (FY) 2018 appropriations through important report language.

FSGS is also a leading cause of end-stage renal disease (ESRD), which nearly 30,000 veterans suffer from nationwide. An additional 3,000 veterans are expected to reach ESRD each year with significant disparities among African Americans. In addition, researchers suggest that environmental exposures have yielded new opportunities for investigating FSGS in the military population. More needs to be done to improve our understanding of the impact of FSGS among our military personnel and veterans.

Please consider adding your name to the letter by contacting Lorenzo Rubalcava in Senator Debbie Stabenow’s office at Lorenzo_Rubalcava@stabenow.senate.gov or 4-4822. This letter will close on May 18th, 2017.

Thank you for your time and your consideration of this letter.

Sincerely,
[Name]
[Address]

Advocacy Alert! Action Required: Tell Congress to Preserve Protections for Chronic Disease Patients

April 10, 2017 by Chelsey Fix

Advocacy Alert! Action Required: Tell Congress to Preserve Protections for Chronic Disease Patients

Contact your House Member to ask them to support critical patient protections during the current healthcare reform effort

Tell Congress to Preserve Protections for Chronic Disease Patients

The leadership of the House of Representatives is continuing to work with conservative and moderate Republicans in an effort to repeal and replace the Affordable Care Act (ACA). Their proposal, the American Health Care Act (AHCA), was pulled from consideration a few weeks ago when it could not muster the votes to pass. However, House leaders continue to try and find common ground in order to modify the House leadership bill to make it passable.

The emerging House leadership plan includes a number of provisions that would be devastating for patients with chronic, complex, and costly medical conditions. The bill would remove protections for individuals with pre-existing health conditions. It would also eliminate the ACA’s Essential Health Benefits—federal quality standards for health insurance policies.

In place of these protections, the bill would expand health savings accounts and tax credits, establish state risk sharing subsidies, and leave it to states to determine which essential health benefits they will offer—likely leading to lower quality benefits for patients with costly diseases.

For patients with costly health conditions, they could likely never put enough money in a health savings account, nor would they be able to take advantage of a tax break associated with not utilizing healthcare services. Further, segregating costly patients into high risk pools has not worked in the past and would jeopardize access for the most vulnerable.

Elimination of the federal mandate that insurers offer a minimum level of benefits and allow states the flexibility to decide these benefits would likely mean that many states would have the incentive to not recommend comprehensive benefits to those with pre-existing health conditions. Insurers could also dramatically hike premiums for those with expensive chronic health care needs.

The House of Representatives could vote on this bill when it returns on April 24^th from the Easter recess. Grassroots outreach and educating Members of Congress about the needs of chronic disease patients continues to influence the overall debate. At this time, please reach out to your House member and ask them to protect patients and oppose discriminatory and dangerous provisions.

Take Action

Secure the contact information for your House representative by visiting House.gov and using the “Find Your Senator/Representative” query tool in the upper right corner.

Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below.

Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns.

If you would like to do more, you can request a brief meeting with the staff at your members’ local offices (the location information is on their websites).

+++++++++++++++++

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for the community of individuals impacted by _________ (condition). I write to urge you to maintain stability for chronic disease patients as you and your colleagues consider healthcare reform and changes to the American Health Care Act (AHCA). The AHCA in its current form would be devastating for my community.

Segregating high cost patients into high risk programs has not worked in the past, even with a federal subsidy. Additionally, eliminating the federal mandate that insurers offer a minimum level of benefits would likely mean that many states could offer substandard benefits for those with pre-existing health conditions or hike premiums for the most vulnerable Americans in desperate need of essential healthcare.

Please make sure any proposal maintains crucial patient protections that promote access and prevent financial hardships. Specifically, please ensure any future proposal:

maintains essential health benefits
prohibits pre-existing condition discrimination
prohibits lifetime and annual caps on benefits
allows young adults to stay on family coverage until they are 26
limits out-of-pocket costs for patients in a meaningful way

[Add a paragraph of brief information about the medical condition you are concerned about. Tell your story.]

Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request.

Sincerely,

[Name]

[Address]

Final NephCure Kidney Network Data Snapshot