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Letters: Action Needed to Help Alabama Dialysis Patients

2021-05-06T19:06:29+00:00May 1st, 2021|Categories: Care Coordination, Patient Ambassadors, Patient's Voice, Spotlight|

By Cortney Beavers of Pell City, AL. One of the most difficult moments of my life was finding out that, despite being only 24 years old, my kidney was beginning to fail. After years of dialysis and a kidney transplant, I learned through my experiences in the health care system what needs to be improved. Doctors and nurses need a better care coordination framework to more effectively treat their patients. I had the benefit of working with terrific nurses and other providers who met my needs and communicated well between one another, but unfortunately that’s not the case for every [...]

DPC Advocates Help Push State Legislation Forward

2021-04-21T19:10:46+00:00April 20th, 2021|Categories: Advance Patient Choice, Article, Medigap Coverage, State Advocacy, Transplant Donor Protection, Uncategorized|

State legislatures are in high gear during spring, and efforts by state legislators to support dialysis patients are in full swing this month. We’ve already had several legislative victories on living organ donor protection bills, while Medigap expansion legislation for the ESRD population has been introduced in multiple states. With support from multiple DPC Patient Ambassadors and Board Members sharing their personal stories on these two policy issues, DPC is making robust arguments for states to actively help improve the quality of life for End Stage Renal Disease (ESRD) patients. Kentucky, New Jersey, Maryland and Washington legislatures have already passed [...]

New Year, New Administration Brings Changes to Medicare’s Kidney Demonstration Projects

2021-04-21T21:14:33+00:00April 14th, 2021|Categories: Article, Care Coordination, Dialysis Funding, Medicare Advantage, Protect Patient Care, Quality Incentive Program|

2021 was supposed to mark the beginning of three new Medicare programs to demonstrate innovations in kidney care, but a last-minute decision from the Center for Medicare and Medicaid Innovation has suspended two of them. This action unfortunately leaves about 50,000 dialysis patients with a nine-month gap in extra assistance they were receiving from a successful program that expired March 31. Here is the rundown on the current landscape of Medicare demonstration projects that impact dialysis patients. Demonstration projects are used by Medicare to test new models of care and/or new models of paying providers within Medicare’s traditional fee-for-service program. [...]

National Minority Health Month

2021-04-21T18:01:37+00:00April 5th, 2021|Categories: Article, Improve Access to Care|Tags: |

April is also recognized as National Minority Health Month, in an effort to highlight and address the health disparities experienced in minority communities. This is especially prevalent among kidney and dialysis patients; Hispanic or Latino Americans 1.3 times more likely to have kidney failure than white Americans, Black or African Americans are almost 4 times more likely, American Indians and Alaska Natives are 1.2 times more likely, and Asian Americans are also at a higher risk. Additionally, the main risk factors for chronic kidney disease (CKD) disproportionately affect minorities. Diabetes, high blood pressure, heart disease, family history of kidney failure, diabetes, [...]

Support New Kidney Care Act

2021-04-06T18:02:04+00:00April 1st, 2021|Categories: Care Coordination, Patient Ambassadors, Patient's Voice, Spotlight|

By Antonio Green of Virginia Beach, VA. While working in Abu Dhabi, I found out I had kidney disease and needed to begin dialysis. I was able to continue working abroad for a few more years, but a 2017 trip to the hospital showed me it was time to move back home. Since then, I’ve noticed that a better, more coordinated system is needed to help dialysis patients. Even when I had a care coordinator, I found the system never really worked for me. Whether it was managing medications, doctors’ appointments or even my attempts to get a kidney transplant, [...]

April is Donate Life Month

2021-04-21T21:13:43+00:00April 1st, 2021|Categories: Access to Transplant, Article, Transplant Donor Protection|

Each April, National Donate Life Month encourages Americans to register as organ, eye, and tissue donors; to become educated about living donation (that includes living kidney donation!); and to honor those that have saved lives through the gift of donation. Over 100,000 children, men, and women are waiting for lifesaving organ transplants, with a new person added to the national transplant waiting list every 10 minutes. Here is some more information on the different types of transplant and what you can do to help. What are the different types of organ donation? Living donation – living donation is an opportunity [...]

Bipartisan Living Donor Protection Act Introduced to Protect Organ Donors

2021-03-23T16:49:50+00:00March 18th, 2021|Categories: Advance Patient Choice, Article, Policy Issues, Transplant Donor Protection|

Congressman Jerrold Nadler (D-NY) and Congresswoman Jamie Herrera Beutler (R-WA), joined by Senator Kirsten Gillibrand (D-NY) and Senator Tom Cotton (R-AR), introduced the Living Donor Protection Act to protect the rights of living organ donors. The Family and Medical Leave Act (FMLA) does not specify that living organ donors can take unpaid leave to recover from their donation and does not guarantee that donors will have a job waiting for them after surgery. Further, according to a 2007 study in the American Journal of Transplantation, as many as 11% of living organ donors experience difficulty securing or paying for insurance after [...]

Bipartisan, Bicameral Members of Congress Urge Biden Administration to Finalize Organ Procurement Reforms

2021-03-23T16:54:15+00:00March 16th, 2021|Categories: Access to Transplant, Article|

A coalition of congressional leaders from the Senate Committee on Finance and the House Committee on Oversight and Reform today urged the Biden administration to finalize a rule to reform the organ procurement system in the United States. The letter, sent to Acting Health and Human Services (HHS) Secretary Norris Cochran was signed by Senate Finance Committee Chair Ron Wyden, D-Ore.; Senators Chuck Grassley, R-Iowa, Ben Cardin, D-Md., and Todd Young, R-Ind.; House Committee on Oversight and Reform (COR) Committee Chairwoman Carolyn B. Maloney, D-N.Y., and Ranking Member James Comer, R-Ky.; House COR Economic and Consumer Policy Subcommittee Chair Raja Krishnamoorthi, [...]

DPC’s Letter to Elizabeth Fowler, Deputy Administrator for CMMI

2021-04-14T17:48:35+00:00March 8th, 2021|Categories: Advance Patient Choice, Improve Access to Care, Increase Quality of Care, Medicare Advantage|

Ms. Elizabeth Fowler, Deputy Administrator Center for Medicare and Medicaid Innovation 2810 Lord Baltimore Drive Windsor Mill, MD 21244. Dear Ms. Fowler: We are seeking a bottom-up review of the ESRD Treatment Choice (ETC) demonstration including consideration of other options to pilot innovations to improve home dialysis take-up and kidney transplantation. Like other kidney advocates, we appreciated the long-overdue cabinet-level attention that was paid to these issues under the Trump administration. But, the ETC program is flawed in concept and execution, and represents a missed opportunity to address pressing problems. As explained in greater detail below, we think it would be [...]

Dori Wolf: Kidney Care

2021-03-25T16:52:00+00:00March 8th, 2021|Categories: Care Coordination, Patient's Voice, Spotlight|

By Dori Wolf of Woodland, CA, DPC Patient Ambassador Finding out I had kidney disease in 1984 forced me to change a lot in my life. Thankfully, due to my work to stay healthy, I was able to avoid needing dialysis until 2007. Starting dialysis was a draining experience that required drastic changes to my diet and exercise habits, despite constantly feeling unwell. However, with the support of my family, I’ve been able to follow doctors’ advice and keep up with treatments. A major frustration, however, has been a lack of coordination in my care. I have 32 allergies to [...]

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