Sign to Support the New Era of Preventing End-Stage Kidney Disease Act of 2023
- by: American Kidney Fund
- recipient: Congress
There are about 150 rare kidney diseases and no FDA-approved treatments for most of them. Many rare kidney disease patients struggle to receive an accurate diagnosis and expert treatment.
These treatment and diagnostic barriers, coupled with the lack of rare kidney disease awareness and education, often cause a delay in diagnosis. This delay can result in a rapid decline in kidney function and, ultimately, kidney failure when the only options are dialysis or transplant.
Each day in the United States, on average, 360 people begin dialysis. In 2021, Medicare spent a total of $52 billion to care for beneficiaries with end stage renal disease (ESRD).
Additionally, communities of color are disproportionately affected by rare kidney diseases and a lack of adequate treatment options due to existing health disparities — Black Americans are over 4 times more likely to develop kidney failure than white Americans.
To address rare kidney disease in the United States, we need more research, public awareness, shorter times to diagnosis, access to genetic testing and counseling, additional treatments, and an understanding of why rates of kidney disease are higher in underserved communities. These steps would help assuage the burden of rare kidney disease on individuals and help defray the costs of dialysis and kidney care in the Medicare program.
The New Era of Preventing End-Stage Kidney Disease Act of 2023 was introduced by Congressman Gus Bilirakis and Congresswoman Terri Sewell. The bill aims to improve the understanding and timely and accurate diagnosis of rare kidney diseases. Please sign and ask your members of Congress today to become an original cosponsor of this important bill.
These treatment and diagnostic barriers, coupled with the lack of rare kidney disease awareness and education, often cause a delay in diagnosis. This delay can result in a rapid decline in kidney function and, ultimately, kidney failure when the only options are dialysis or transplant.
Each day in the United States, on average, 360 people begin dialysis. In 2021, Medicare spent a total of $52 billion to care for beneficiaries with end stage renal disease (ESRD).
Additionally, communities of color are disproportionately affected by rare kidney diseases and a lack of adequate treatment options due to existing health disparities — Black Americans are over 4 times more likely to develop kidney failure than white Americans.
To address rare kidney disease in the United States, we need more research, public awareness, shorter times to diagnosis, access to genetic testing and counseling, additional treatments, and an understanding of why rates of kidney disease are higher in underserved communities. These steps would help assuage the burden of rare kidney disease on individuals and help defray the costs of dialysis and kidney care in the Medicare program.
The New Era of Preventing End-Stage Kidney Disease Act of 2023 was introduced by Congressman Gus Bilirakis and Congresswoman Terri Sewell. The bill aims to improve the understanding and timely and accurate diagnosis of rare kidney diseases. Please sign and ask your members of Congress today to become an original cosponsor of this important bill.
Dear Legislator,
Please cosponsor this important legislation. As someone who has been affected by kidney disease, I am writing to ask that you become a cosponsor of the New Era of Preventing End-Stage Kidney Disease Act of 2023. The bill has been introduced by Reps. Gus Bilirakis and Terri Sewell.
There are about 150 rare kidney diseases and no FDA-approved treatments for them. Many patients struggle to receive an accurate diagnosis and expert treatment, and these treatment and diagnostic barriers, coupled with the lack of rare kidney disease awareness and education, often cause a delay in diagnosis. This delay can result in a rapid decline in kidney function and, ultimately, kidney failure when the only options are dialysis or transplant.
Each day in the United States, on average, 340 people begin dialysis. In 2021 (the most recent data available), Medicare spending for ESRD beneficiaries was more than $52 billion, nearly 7% of total Medicare costs, though the ESRD population makes up less than 1% of the total Medicare population. Additionally, communities of color are disproportionately affected by rare kidney diseases and a lack of adequate treatment options due to existing health disparities — Black Americans are over 4 times more likely to develop kidney failure than white Americans.
To address rare kidney disease in the United States, we need more research, public awareness, shorter times to diagnosis, access to genetic testing and counseling, additional treatments, and an understanding of why rates of kidney disease are higher in underserved communities. These steps would help assuage the burden of rare kidney disease on individuals and help defray the costs of dialysis and kidney care in the Medicare program.
The bill would create NIDDK Centers of Excellence on Rare Kidney Disease Research, which would study the causes, diagnosis, progression, and treatment of rare kidney diseases and increase public awareness of rare kidney diseases, particularly in rural and underserved communities. The centers would also develop resources for clinical research, training, diagnosis, prevention, and treatment of rare kidney diseases.
The bill would require the Secretary of the Department of Health and Human Services (HHS) to conduct a study and submit it to Congress, focusing on understanding and slowing the progression of rare kidney diseases through early intervention, testing, and treatment. The study would also examine the utilization of kidney biopsies to diagnose rare kidney diseases and the use of genetic and genomic tests to detect specific issues, including APOL1 gene variants which can lead to APOL1-Mediated Kidney Disease (AMKD). Finally, the study would include the social, behavioral, and biological factors leading to rare kidney disease, such as access to nephrologists among communities that are disproportionately affected.
The bill would expand funding to schools of health professions to expand primary care training to include rare kidney disease. The bill would also increase the number of nephrology fellowships aimed at expanding the knowledge about rare kidney disease prevention, diagnosis, and treatment of populations disproportionately impacted by the disease, including the prevalence of the APOL1 gene.
Finally, the Secretary of the HHS provides a study to Congress to evaluate methods for treating rare kidney disease, especially those that delay or eliminate the need for transplant and dialysis. The study would review efforts to increase public awareness of rare kidney disease and include recommendations for legislative changes that would make progress on the goals identified in the study.
Please become a cosponsor of this important legislation.
Sincerely,
[Name]
Sign PetitionSign PetitionPlease cosponsor this important legislation. As someone who has been affected by kidney disease, I am writing to ask that you become a cosponsor of the New Era of Preventing End-Stage Kidney Disease Act of 2023. The bill has been introduced by Reps. Gus Bilirakis and Terri Sewell.
There are about 150 rare kidney diseases and no FDA-approved treatments for them. Many patients struggle to receive an accurate diagnosis and expert treatment, and these treatment and diagnostic barriers, coupled with the lack of rare kidney disease awareness and education, often cause a delay in diagnosis. This delay can result in a rapid decline in kidney function and, ultimately, kidney failure when the only options are dialysis or transplant.
Each day in the United States, on average, 340 people begin dialysis. In 2021 (the most recent data available), Medicare spending for ESRD beneficiaries was more than $52 billion, nearly 7% of total Medicare costs, though the ESRD population makes up less than 1% of the total Medicare population. Additionally, communities of color are disproportionately affected by rare kidney diseases and a lack of adequate treatment options due to existing health disparities — Black Americans are over 4 times more likely to develop kidney failure than white Americans.
To address rare kidney disease in the United States, we need more research, public awareness, shorter times to diagnosis, access to genetic testing and counseling, additional treatments, and an understanding of why rates of kidney disease are higher in underserved communities. These steps would help assuage the burden of rare kidney disease on individuals and help defray the costs of dialysis and kidney care in the Medicare program.
The bill would create NIDDK Centers of Excellence on Rare Kidney Disease Research, which would study the causes, diagnosis, progression, and treatment of rare kidney diseases and increase public awareness of rare kidney diseases, particularly in rural and underserved communities. The centers would also develop resources for clinical research, training, diagnosis, prevention, and treatment of rare kidney diseases.
The bill would require the Secretary of the Department of Health and Human Services (HHS) to conduct a study and submit it to Congress, focusing on understanding and slowing the progression of rare kidney diseases through early intervention, testing, and treatment. The study would also examine the utilization of kidney biopsies to diagnose rare kidney diseases and the use of genetic and genomic tests to detect specific issues, including APOL1 gene variants which can lead to APOL1-Mediated Kidney Disease (AMKD). Finally, the study would include the social, behavioral, and biological factors leading to rare kidney disease, such as access to nephrologists among communities that are disproportionately affected.
The bill would expand funding to schools of health professions to expand primary care training to include rare kidney disease. The bill would also increase the number of nephrology fellowships aimed at expanding the knowledge about rare kidney disease prevention, diagnosis, and treatment of populations disproportionately impacted by the disease, including the prevalence of the APOL1 gene.
Finally, the Secretary of the HHS provides a study to Congress to evaluate methods for treating rare kidney disease, especially those that delay or eliminate the need for transplant and dialysis. The study would review efforts to increase public awareness of rare kidney disease and include recommendations for legislative changes that would make progress on the goals identified in the study.
Please become a cosponsor of this important legislation.
Sincerely,
[Name]
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