2023 Legislative Priorities
Founded in 1982, the PKD Foundation is dedicated to supporting and improving the lives of all affected by PKD. As the largest private funder of PKD research, the Foundation promotes research and provides education, advocacy and awareness on a national level. The organization has 35,000 constituents active in 49 states and Washington D.C.
PKD is a chronic, genetic condition which causes uncontrolled growth of fluid-filled cysts in the kidneys, often leading to kidney failure. Beyond the impact on the kidney, PKD is a systemic disease that also increases risk for liver cysts, aneurysms, mitral valve prolapse, hernias, diverticulosis and diabetes. There are two types of PKD:
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Autosomal Dominant (ADPKD) is the more common type and affects an estimated 12.4 million people worldwide.
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Autosomal Recessive (ARPKD) is a rare form of the disease that occurs in 1 in 20,000 individuals.
PKD affects an estimated 600,000 Americans and millions worldwide.1
2023 Legislative Priorities
1
Support the continued inclusion of PKD as a designated research topic under the Peer Reviewed Medical Research Program (PRMRP) at the Department of Defense (DoD).
2
Support the passage of the Living Donor Protection Act to prevent any discrimination in insurance coverage for living donors across America.
3
Congressionally Directed Medical Research Program (CDMRP)
The CDRMP supports novel approaches to biomedical research in response to needs of military personnel, their families, and the American public.
PKD has been a research topic since 2006, allocating over $40 million for PKD research.
Living Donor Protection Act
Currently, there is no federal legislation protecting living organ donors from losing their jobs to take time off to recover from transplant surgery. Living donors may experience higher premiums or denial of coverage for life, disability and long-term care insurance.
The case for better laws:
- There is no federal law that protects donors from losing their jobs while on leave for organ donation.
- 25% of living donors were denied or charged more for life insurance.
5 - More than 5,000 of the 20,000 kidney transplants in 2022 were living donations.6
There are nearly 96,070 individuals on the kidney transplant waiting list.3 Just 20,090 transplants were performed in the year 2022.4
Proposed protections:
1. Prohibit insurance companies from denying or limiting life, disability or long-term care insurance to living donors.
2. Prohibit insurance companies from charging higher premiums to living donors.
3. Living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from donation.
Organ Transplantation Transparency, Accessibility, and Reform
Kidney disease disproportionately affects communities of color. Black/African Americans and Hispanic/Latinos are disproportionately impacted.
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Each day 17 people die waiting for an organ transplant. 12 of those who died were waiting for a kidney. Yet, 30% of kidneys procured from deceased donors are discarded.
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Communities of color experience greater challenges throughout their transplant journey due to existing health disparities.
The median wait time for a kidney transplant for non-white patients is five years, compared with 3.4 for white patients—resulting in nearly 50% longer wait times for racial and ethnic minorities.
To address these important areas of need, Congress should support legislation that would address disparities in kidney care while also improving accessibility, data collection and transparency in kidney care transplantation.
Black/African American patients are less likely to be referred for transplantation and are more likely to experience graft failure after a transplant.7 8
2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6592047/
3. https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#
4. https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#
Black/African American patients are less likely to be referred for
transplantation
and are more likely to experience graft failure after a transplant.7 8
5. Sources of Facts and Statistics: Organ Procurement and Transplant Network United States Renal Data System (USRDS)
6. https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#
7. Jenna M. Norton, Marva M. Moxey-Mims, Paul W. Eggers, Andrew S. Narva, Robert A. Star, Paul L. Kimmel and Griffin P. Rodgers JASN September 2016, 27 (9) 2576-2595;
DOI: https://doi.org/10.1681/ASN.2016010027
8. Ng YH, Pankratz VS, Leyva Y, Ford CG, Pleis JR, Kendall K, Croswell E, Dew MA, Shapiro R, Switzer GE, Unruh ML, Myaskovsky L. Does Racial Disparity in Kidney Transplant
Waitlisting Persist After Accounting for Social Determinants of Health? Transplantation. 2020 Jul;104(7):1445-1455. doi: 10.1097/TP.0000000000003002. PMID: 31651719; PMCID: PMC7153978
Last reviewed November 2022
