NephCure Kidney International ®

Saving Kidneys, Saving Lives

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

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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 24th 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).

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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]

Advocacy Day 2017

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NephCure invites all patient families, doctors, researchers, nurses, and everyone else impacted by Nephrotic Syndrome to join us on June 8th and 9th for a day on Capitol Hill. We will be meeting with Representatives, Senators, or Congressional staff to share our stories about Nephrotic Syndrome and kidney disease and to ask for research funding that can help us find better treatment options and cures.

p1130077This is your chance to make sure your voice is heard by legislators. Your story matters, and can help
shape policies that impact millions of Americans. NephCure only hosts this event every 2 years, so don’t miss your chance to share your story with your elected representatives.

If you are interested in attending Advocacy Day with us, please email Chelsey at cfix@nephcure.org or call 610-540-0186 ext 19 for registration and hotel information.

Date: June 8th & 9th
Location: Capitol Hill, Washington D.C.
Who: Everyone impacted by Nephrotic Syndrome
How to attend: Email cfix@nephcure.org for registration and travel information

Can’t make June 8th-9th? There are opportunities to advocate on Capitol Hill with other organizations! The dates and organizations are listed below, and feel free to email us if you would like more information on these events:

National Kidney Foundation: March 6- 7

 

your story matters phrase handwritten on blackboard with heart symbol instead of O

Advocacy Alert- Action Required!

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Advocacy Action Alert

Please contact your two Senators and your House Representative to ask them to support critical patient protections during the current healthcare reform effort 

Background

Congress is currently debating significant changes to the healthcare system, including changes that will impact private insurance expenses and accessibility. This debate has the potential to create many negative outcomes for individuals and families affected by chronic or costly medical conditions. If federal patient protections are ultimately removed or weakened, then many patients could be exposed to increased costs, medical bankruptcy, and lack of access to needed
p1130077care or therapies.

Patient protection is a crucial piece to any healthcare legislation, and lawmakers need to understand that there are some essential “pillars” of patient protection that must be included in any healthcare reform. These pillars can greatly benefit primary NS patients and families in terms of their insurance coverage.

The essential pillars of patient protection are:

  1. Prohibiting discrimination from coverage based on pre-existing conditions
  2. Allowing children to remain on their parents’ policy until age 26
  3. Limiting out-of-pocket costs for patients
  4. Prohibiting annual or lifetime caps on insurance benefits

Members of Congress need to understand that their constituents expect them to maintain and strengthen patient protections in the healthcare system. The best way to educate your two Senators and your House Representative about your needs and earn their support for patient protections is to connect with their offices and make your voice heard.

How To Take Action

  • Secure the contact information for your two Senators and one Representative by visiting Senate.gov and www.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 on the next page.
  • Politely and occasionally follow up on the 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).
    • Don’t forget about NephCure’s Advocacy Day on Capitol Hill! More details coming soon, but save the date for June 2017.

SAMPLE EMAIL, LETTER, OR CALL TRANSCRIPT

Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for the community of individuals impacted by (medical condition). As you and your colleagues consider healthcare reforms, please make sure any proposal maintains crucial patient protections that promote access and prevent financial hardships. Specifically, please continue to:

  • Prohibit pre-existing condition discrimination
  • Allow young adults to stay on family coverage until they are 26
  • Limit out-of-pocket costs for patients
  • Restrict lifetime and annual caps on benefits

I am / My family member is living with a chronic and debilitating kidney disease called _________. Currently, there is no FDA approved treatment option for this disease. That means therapies are expensive and can have many side effects, which require more treatments. [ADD MORE OF YOUR PERSONAL STORY / EXPERIENCE]

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

Sincerely,

[Name]
[Address]

*If you are interested in attending or learning more about NephCure’s upcoming Advocacy Day, please email cfix@nephcure.org for more information

 

August is Advocacy Month

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Be an advocate now! Meet with your legislators locally during the upcoming congressional recess to educate them about Nephrotic Syndrome and FSGS and to ask for their assistance with key legislative and policy issues.

meetingBackground
Members of Congress will be in their districts from Monday, August 1st until Friday, September 2nd, Legislators use this time away from Capitol Hill to meet with their constituents and learn about the issues impacting the people they represent. Advocates for NephCure Kidney International can use this opportunity to schedule meetings with the local offices of their members of Congress to educate legislators about Nephrotic Syndrome and FSGS and how they can assist and support affected individuals. You do not need to be an expert in government to be effective, you just need to be willing to tell your story. NKI will assist you with the rest. Taking action is easy:

– Inform NKI of your interest in making a local congressional visit by contacting our Washington Representative, Philip Goglas II at Goglas@hmcw.org. At this time, please provide Phil with your address and zip code so he can identify your legislators.
– Consider making a local visit as a group, either with colleagues or other affected individuals from your area that you are in contact with.
– Familiarize yourself with the issue briefs and talking points below. NKI will also send you branded advocacy materials to provide to the office(s) that you meet with. These materials include comprehensive information that can assist you with discussing these topics.
– NKI will send you the contact information for the local congressional office near you. Please call this office and work to schedule a recess meeting at a time that is convenient for you or your group’s schedule.
– NKI’s Washington Representatives are available to advise and assist you with making an effective local visit. Please let NKI know if you would like any training and we will connect you with the appropriate folks so they can support your efforts and answer any questions you might have.
– Meet with the local office, tell your story, ask them for their assistance on key issues, provide them with the leave behind materials, and then report back to NKI with a brief summary of your discussion and whether you believe any follow up is needed.

About the Issues
Each year, NKI outlines a federal advocacy agenda that is focused on advancing medical research, facilitating treatment development, and improving healthcare. This agenda is comprised of contemporary legislative and public policy issues impacting the kidney community. In order for a member of Congress to understand and take appropriate action on these issues, their office needs to be properly educated by a constituent. To be successful in your meetings you will not need to remember complicated political information, you just need to tell your story.

White House Organ Summit 2016

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The Obama Administration met with numerous companies, foundations, hospitals, universities, and patient advocacy groups at the White House’s Organ Summit on Monday, June 13. The goals of the summit include increasing the number of organ transplants by 2,000 each year, improving patient outcomes, facilitating research and developments around organ donation, and closing the gap between Americans who support organ donation and those who are actually registered organ donors.

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Last year, the United States exceeded 30,000 annual organ transplants for the first time, yet 120,000 Americans are still waiting for an organ donation. Today, twenty-two people will die waiting for a life-saving transplant. President Obama, and several government and non-governmental organizations have made many efforts to reduce the organ donation waitlist, support patients, and increase access to organ transplantation.

Announced on Monday, almost $200 million in investments will be made to facilitate research and development related to organ donation. Specifically the Department of Defense (DOD) in a $160 million public-private investment will create an Advanced Tissue Biofabrication Manufacturing Innovation Institute to develop new manufacturing techniques to repair organ damage by replacing cells and tissues and that can hopefully be used one day to replace entire organs. In similar efforts, the DOD will award small businesses working to advance the science behind preserving organs and tissues.

The donor registration system is being re-imagined to seamlessly and effectively increase registrations and transplants. More than a dozen organizations including Facebook and Twitter are finding new tools and developing campaigns to make registering to be an organ donor easier with the intention of signing up 1 million new donors by fall of 2016.

More than 100,000 people on the organ waiting list are awaiting a kidney transplant so kidney-specific projects were a highlight of Monday’s Summit.

The American Society of Nephrology will partner with the XPRIZE Foundation to encourage the development of a new device solution for patients experiencing end-stage renal disease – an improvement on current dialysis methods. This project aims to overcome the decades of stagnation in kidney disease treatment.

In addition, dozens of transplant centers announced a collaboration to share data and best practices for hard-to-match patients, which could help more than 1,000 people gain access to transplants. Johns Hopkins University is currently working with the National Institute of Allergy and Infectious Disease to create HIV-positive donor pools, which could also lead to as many as 1,000 more transplants per year.

Part of the Organ Summit included the publication of letters written by organ donation recipients. One of which was from NBA player Alonzo Mourning, a kidney transplant patient. Mourning, who lost his kidney due to FSGS, went on to Mourningwin a championship following his transplantation, and today brings awareness to the efforts of the White House and the importance of organ donation registration.

Your Advocacy at Work – New Funding for FSGS Research

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Since 2014, NKI and our dedicated community of patient advocates have been encouraging Congress to include FSGS on the Department of Defense’s list of conditions eligible for research funding through the Peer Reviewed Medical Research Program. Learn more about these efforts here.

Directly as a result of our advocacy, FSGS was included on the list in 2015 and 2016. This new stream of grant funding gives FSGS researchers access to up to $278 million in grant awards. Last year was the first year that FSGS researchers were able to submit grant applications for this new funding stream and recently, the DoD  announced which of those applications were recommended for funding. We are thrilled that five FSGS projects made the list!

FY 2015 Discovery Award

Suzie Pun – University of Washington

FY 2015 Investigator-Initiated Research Award – Partnering PI Option

Ali Gharavi – Columbia University Medical Center

Simone Sanna-Cherchi – Columbia University Medical Center

Suzie Pun – University of Washington

Stuart Shankland – University of Washington

We can’t wait to tell you more about the winning projects for 2015 and look forward to even more success in the 2016 cycle.

In order to ensure that FSGS continues to be included as an eligible condition each year, we must continue to advocate. Stay tuned for more information about what you can do to help!

Advocacy in Action – Nephrotic Syndrome Research Funding Support Letters

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P1130101Thank you to all of you who wrote to your Senators and Representatives asking them to support funding for Nephrotic Syndrome and FSGS research! Through your efforts, appropriations letters were sent to relevant subcommittee chairs in the House and Senate encouraging them to increase funding for these diseases. Four Senators signed the Senate letter and 27 Representatives signed the House letter.

Background

Each year, Congress decides how much federal funding should be applied to medical research activities and provides guidance to the National Institutes of Health (NIH) on what conditions legislators are particularly interested in. Recently, Members of Congress have been deciding on the level of NIH funding for fiscal year (FY) 2017 and crafting the accompanying list of research recommendations. As a result of grassroots outreach, the community of individuals affected by glomerular diseases has educated many Member of Congress who have become champions on research and patient care issues.

House Letter

On behalf of the community, Congressmen Ryan Costello, Ted Deutch, and Alcee Hastings recently circulated a “Dear Colleague” letter on Capitol Hill that voices strong support for advancing research into FSGS and related conditions at NIH. We asked the entire NephCure community to encourage their representatives to sign on to the letter and the response was overwhelming!

Click here to see the letter and all 27 signatories.

Senate Letter

On the Senate side, Senator Debbie Stabenow lead a letter to the Defense Appropriations Subcommittee asking them to include FSGS as a condition eligible for study in the Peer-Reviewed Medical Research Program in the Fiscal Year 2017 Defense Appropriations Bill. Click here to read the letter and see the signatories.

 

NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness

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FOR IMMEDIATE RELEASE

Contact Information:
NephCure Kidney International
Erin Russell
erussell@nephcure.org

NephCure Kidney International and Local NY Teenager
Sydney Levine Launch MARCHing to Awareness

{Melville, NY, March 2, 2016} – NephCure Kidney International and Sydney Levine, from Melville , NY, will be MARCHing to Awareness for the month of March.  Sydney, 15, rang the closing bell at the NYSE yesterday to kick off her month long drive to promnote awareness of  chronic kidney disease.  Sydney’s brother, Matthew, 12, has Focal segmental glomerulosclerosis (FSGS), a rare kidney disease for which there is no cure.

FullSizeRenderMARCHing to Awareness is a campaign aimed at promoting f National Kidney Disease Awareness Month and will target a different activity each day of the month.  Yesterday, March 1, Sydney spoke in front of the Suffolk County Legislature and rang the NYSE closing bell.

“Academics aside, I wanted to express my admiration for Matthew in the way he conducts himself.  In spite of his condition, his positive attitude never waivers.  I cannot remember the last time I didn’t see him with a smile on his face.  Many kids would use his condition as a crutch or an excuse; he appears to use it as a motivator.  I, for one, am inspired by this. I hope this month is just a start to finding a permanent solution to what Matthew and other kids like him are going through,” Chris Regini, Matthew and Sydney’s science teacher.

For more information, please visit www.nephcure.org or search #KidneyAwarenessMonth

NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure.

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Advocacy Alert! Ask your Senators to sign FSGS funding letter

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Contact both your Senators and ask that they sign on to Senator Debbie Stabenow’s (D-MI) letter supporting the inclusion of “focal segmental glomerulosclerosis (FSGS)” as condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2017 appropriations process (Urgent – Deadline for Signatures is March 11)

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.

Senators are currently working on the FY 2017 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. Being included on the list one year is no guarantee of being included again in the next year. At this critical time, please reach out to the offices of your Senators and ask that they “sign on to Senator Debbie Stabenow’s letter supporting the inclusion of “focal segmental glomerulosclerosis (FSGS)” in the DOD PRMRP’s eligible conditions list for FY 2017.” Click here to read the letter.

Take Action

  • Recommended: Copy and paste the email template below, add your info (where prompted) and send it to NKI’s Washington Representative Phil Goglas at goglas@hmcw.org . Phil will forward your e-mail on to the appropriate staff person in your Senators’ offices on your behalf.

or

  • Reach out yourself to the Health Legislative Assistant in the Washington, DC, offices of both your U.S. Senators and ask for their support.
  • To identify the contact information for your Senators’ Health LAs, simply go to Senate.gov and select your State. If you call the office (the 202 number), the staff will tell you the name of the Health LA and let you leave a voicemail (you can use the message below as a script). E-mail is more effective, but the receptionist will not likely provide you with the Health LA’s e-mail address.
  • If you would like to e-mail the Health LAs in the offices of your Senators, please contact Phil at goglas@hmcw.org. He will provide you with their name and e-mail address.

Congressional deadlines are fast approaching, so you must reach out to your Senators this week (the first week of March) or early next week to have an impact.

Email Template

Dear Senator ____________,

Senator Debbie Stabenow is currently circulating a Senate sign on letter in support continuing to include “Focal Segmental Glomerulosclerosis” (FSGS) in the list of conditions deemed eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) during the FY 2017 appropriations process. On behalf of FSGS impacted families across the state, please contact Sam Schuiteman in Senator Stabenow’s office at Sam_Schuiteman@stabenow.senate.gov or 4-4822 to join this important letter by COB Friday, March 11th.

FSGS is a rare and devastating kidney disease that is a leading cause of end-stage renal disease (ESRD). Nearly 30,000 veterans suffer from ESRD and an additional 3,000 veterans are expected to reach ESRD each year with significant health disparities among African American due to variants of the APOL1 gene. In addition, researchers suggest there are new opportunities for investigating FSGS in the military population with respect to environmental exposures. More needs to be done to improve our understanding of the impact of FSGS among our military personnel and veterans. FSGS has been part of the PRMRP for some time, including FY 2016, and continued participation will lead to further scientific progress.

[OPTIONAL: Briefly tell your FSGS story in 2-4 sentences]

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

Sincerely,

[Your Name]

[Your Address]

Your Advocacy Creates Change – Living Donor Protection Act

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P11301012/26/16 – Because of your efforts on Capitol Hill, the Living Donor Protection Act of 2016 was introduced yesterday by Rep. Jerrold Nadler (D-NY) and Rep. Michael Burgess, MD (R-TX) in the House, and Sen. Mark Kirk (R-IL) and Sen. Kirsten Gillibrand (D-NY) in the Senate.  This legislation promotes organ donation and protects the rights of living organ donors. It is made possible in part by YOUR action on Kidney Community Advocacy Day, a joint advocacy event with the support of 16 separate kidney organizations and led by the American Society of Nephrology (ASN).For many patients with kidney failure, a transplant can be the best form of kidney replacement therapy. But today, more people than ever are waiting for this life-saving measure: a patient is added to the kidney transplant wait list every 14 minutes. In 2014, there were 101,168 people on the kidney transplant wait list, but only 5,536 living donor transplants performed that year. The Living Donor Protection Act would increase the number of kidney transplants by eliminating pointless barriers to donation.

This bill prohibits insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors. It also clarifies that living organ donors can use Family Medical Leave Act time to recover from donation surgery and maintain job security. This important legislation will allow more Americans to consider living organ donation and help countless people receive the gift of life.

NephCure Kidney International strongly supports this bill and joins ASN and the National Kidney Foundation in urging members of Congress to support this bi-partisan legislation.

Want to make sure this bill becomes law? Tell your Senators and Representatives why it’s important to you, and urge them to cosponsor it. You can find supplemental documents to send to your congresspeople here.

Organizational Mission

NephCure Kidney International ® is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, improve treatment and find a cure.

Our Proud Partners

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