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Letter: Pass Medigap expansion

2024-03-29T01:11:59+00:00April 2nd, 2021|Categories: Patient Stories in the News|

I never considered the possibility of having kidney disease until I ended up in the emergency room with a life-threatening illness. The doctors told me I was “toxic” and said I had developed kidney disease due to hypertension. Not long after, I started dialysis treatments. Being on dialysis meant I couldn’t work full time, so I wanted to find a way to get involved and help others like me. Dialysis is tough, and I want to use my experiences to help ensure patients can get the care they need without worrying about their finances or how they will put food [...]

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Support New Kidney Care Act

2024-03-29T01:11:59+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, [...]

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April is Donate Life Month

2024-03-29T01:12:00+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 [...]

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Bipartisan Living Donor Protection Act Introduced to Protect Organ Donors

2024-03-29T01:12:00+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 [...]

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

2024-03-29T01:12:00+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, [...]

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

2024-03-29T01:12:00+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 [...]

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Dori Wolf: Kidney Care

2024-03-29T01:12:00+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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DPC Advocates Advance Dialysis Patient Issues at the State Level

2024-03-29T01:12:00+00:00February 19th, 2021|Categories: Advance Patient Choice, Medigap Coverage, Patient Ambassadors, Patient's Voice, State Advocacy, Transplant Donor Protection|

Despite the ongoing pandemic and economic crisis, many state legislators recognize the added challenges faced by dialysis patients every day. Some have responded by introducing legislation to increased dialysis patient access to Medigap plans to help patients cover their 20% coinsurance expenses. Others are working to advance legislation to help increase the pool of living kidney donors. DPC would like to recognize some of the patient leaders who are elevating the patient voice by educating state legislators on the importance of these efforts. DPC Board Members Adrian Miller and Pius Charles Murray are pressing for passage of critical legislation in their [...]

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The BETTER Kidney Care Act is an important step forward

2024-03-29T01:12:00+00:00February 19th, 2021|Categories: Care Coordination, Patient's Voice, Spotlight|

By Bryce Mumford, DPC Patient Ambassador My experience with dialysis extends four years: from when my first kidney transplant failed in 2014 to when I received my second transplant in 2018. During that time, the most frustrating thing I encountered was a lack of care coordination. I bounced between several doctors who treated my various health issues independently. Every doctor’s visit required me to provide my full medical history, which was time-consuming and labor-intensive. This was a burdensome task while still working a full-time job to support my family. However, my treatment center began implementing greater care coordination. This meant [...]

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President Declares State of Emergency in Texas

2024-03-29T01:12:00+00:00February 15th, 2021|Categories: Article, Transportation Services|

The winter storm that recently crippled the state of Texas was difficult to watch, knowing millions of people were struggling to access electricity, heat, and clean water. But this situation was even more dire for dialysis patients whose lives literally depend on these resources, as well as the access to safe transportation to them. If you or a loved one are in need of assistance after this storm, please visit https://www.disasterassistance.gov/ to apply for assistance. Additionally, as a dialysis patient, should you ever find yourself in an emergency situation, please visit https://www.kcercoalition.com/en/patients/ for more information.

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