overview and introduction
when you act, progress happens
Because public funding plays a critical role in the lives of hundreds of thousands of kidney disease patients across the country, and because legislative action rarely takes place without help, the National Kidney Foundation of Illinois collaborates with lawmakers, medical experts, and community leaders to shape public policy on behalf of patients and families affected by kidney disease.
We urge elected representatives to improve the state of medical care, advance new research, make treatment more accessible, and treat kidney disease as a healthcare priority.
At the local level, we work with state and city officials to ensure that Illinois is doing its level best to offer excellent care/support for kidney disease patients, people on dialysis, and organ donors. On the federal level, we support our national office's efforts in Washington.
Hear from members of our national office's advocacy committee, and learn about the role you can play in guiding public policy.
how you can help
quick references, meaningful steps
contact your representative
Lawmakers' priorities are shaped by the passion of their constituents, which means your voice matters. Tell them how much you care about improving public health.
schedule a district meeting
Make a larger impression by connecting with your representative in person at an in-office visit. An impactful meeting can help move legislation towards the finish line.
policy & legislation
current priorities and ongoing issues
The National Kidney Foundation of Illinois actively pursues a thoughtfully curated portfolio of legislation. Learn more about the measures we are currently supporting by exploring the links below.
Tax Credits for Organ Donor Leave (S.B. 68)
A comprehensive organ donor leave policy for private sector employees would make a significant difference in the lives of thousands of Illinois residents who require organ transplants. To improve the lives of living organ donors, the National Kidney Foundation of Illinois recommends the government of Illinois provide tax credits or other subsidies to private companies, organizations, and businesses that have an organ donor leave policy in place that is similar to the Organ Donor Leave Act (5 ILCS 327) for Illinois state employees.
Organ Donor Protections Act (H.B. 2847) - PASSED!
HB 2847 is Illinois’ version of the Living Donor Protection Act. This bill outlines key protections for living donors, making sure that employers cannot retaliate against an employee for requesting or obtaining a leave of absence to donate blood, an organ, or bone marrow. This bill will also protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long term care insurance to living donors, and from charging higher premiums.
Living Donor Protection Act (H.R. 1270)
Currently, living organ donors experience higher premiums or denial of insurance coverage based solely on their organ donor status. There is no federal protection to ensure that donors will not lose their jobs for taking time off for transplant surgery and recovery.
Why is this an issue? The lack of insurance protection, higher premiums and loss of job are barriers for someone who wants to donate an organ. With so many on the waiting list for an organ, it is imperative that we make this process as simple as we can. The Living Donor Protection Act, introduced by Representatives Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA), will protect living organ donors and remove barriers to donation. Under this act, insurance companies are prohibited from denying or limiting life, disability and long-term care insurance to living donors, and from charging higher premiums.
Support Early Diagnosis of Kidney Disease (H.R. 3867)
For too long patients have asked why they were not diagnosed with chronic kidney disease (CKD) before learning they had kidney failure (ESRD). The value is early detection is obvious: it enables predialysis education, allows patient to pursue preventive measures (that delay or even halt progression of CKD to end stage renal disease), and decreases initial morbidity and mortality.
Representatives Markwayne Mullin (R-OK), George Holding (R-NC), Linda Sanchez (D-CA), and G.K. Butterfield (D-NC) have introduced innovative legislation (H.R. 3867) that seeks to demonstrate that early detection of CKD, combined with effective, coordinated care that engages patients in the decision-making process, not only improves clinical results but also lowers healthcare spending. At a time when the cost of healthcare is under scrutiny, legislation that will help save taxpayer costs and save lives is more timely than ever. This legislation will pilot a Medicare program that bundles payments to primary care and nephrologists for delivering high-quality, appropriate CKD care that engages patients. The NKF initiated this landmark legislation and believes it can help change the pattern of how CKD is identified and treated, improving the outcomes and quality of life of patients with CKD.
Support Extended Medicare Coverage of Immunosuppressive Medications (H.R. 5534)
In 1972, Congress made a commitment to cover treatment for patients with end-stage renal disease (ESRD) regardless of their age or disability status. Today, Medicare covers the costs for an ESRD patient to receive a transplant but only covers their anti-rejection medication – one of the key factors that ensures long-term organ health – for 3 years after surgery. If a patient cannot afford their medications, the transplanted kidney will be rejected and the patient will have to return to dialysis – a costly and burdensome treatment that reduces the patient’s overall health outcomes and quality of life.
The Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would be a straightforward solution to an unnecessary problem. This bipartisan legislation will:
Allow kidney transplant recipients to continue receiving Medicare coverage for their immunosuppressive medications
Reduce the need for dialysis – a costly and burdensome treatment – and repeated kidney transplants, saving both lives and money over time
Save Medicare an estimated $300 million dollars over ten years while also saving patients and caregivers from overwhelming medical bills
toolkits, fact sheets, and information
Eager to contact your elected representative and make a difference on behalf of kidney disease patients? Learn how to get started on your advocacy efforts by exploring the links below.
The following advocacy resources are provided courtesy of our national office in New York.
kidney advocacy council
representing a healthier future
The NKFI's Kidney Advocacy Council is comprised of civic-minded Illinois residents who are committed to informing public policy, research, and education on matters involving kidney-related health.
The KAC participates in a number of activities to change kidney disease health policy, improve care, better quality of life, and advance the treatment of kidney disease. Additionally, they educate other Americans about the risks of developing chronic kidney disease, and bring to light the challenges of living with a diagnosis.
Advocates meet with elected officials to build support for legislation – such as preventing insurance discrimination against living organ donors, establishing tax credits supporting living organ donation, and increasing funding for programs to research and treat CKD.
Additionally, KAC advocates may serve as speakers on panels, co-chair of conferences, participate in focus groups, and liaise with other healthcare groups; including providers, pharmaceutical companies and other kidney organizations.
read dispatches along the path to progress
Learn about the impact advocacy makes by reading these stories from transplant patients who have benefited from legislation supported by the National Kidney Foundation of Illinois and our national office in New York.