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Giving Tuesday: What Can We as Dialysis Patients Give?

2024-03-29T02:08:07+00:00December 6th, 2013|Categories: Immunosuppressive Drug Coverage, Patient's Voice, What is Kidney Disease?|Tags: |

By James Myers, DPC Patient Ambassador On the website for the Polycystic Kidney Foundation, there is an announcement about Giving Tuesday, December 3rd, 2013. It says you can give one of three ways: your voice, your time or your dollars. As a dialysis patient, I don’t know about you, but I don’t have any money. But two things that I have a lot of are voice and time, and I am more than happy to lend those to the cause of defeating PKD. I can honestly say that having an invisible fatal illness has colored every decision that I have [...]

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HOPE Act Signed Into Law

2024-03-29T02:08:07+00:00December 1st, 2013|Categories: Access to Transplant, Article|Tags: |

After tireless efforts by DPC and others in the kidney community, President Obama signed the HIV Organ Policy Equity (HOPE) Act into law on November 21, 2013. The HOPE Act was introduced with strong bipartisan support in the House of Representatives by Rep. Lois Capps and Rep. Andy Harris and in the Senate by Sen. Barbara Boxer and Sen. Tom Coburn.  The HOPE Act legalizes the research of transplanting HIV positive organs into HIV positive recipients.  If this research proves this practice to be effective, the organ supply in the United States could increase by 500 organs per year.  Many of these organs [...]

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Patient Outcry Draws a Two-Year Reprieve From Dialysis Cuts

2024-03-29T02:08:08+00:00December 1st, 2013|Categories: Article, Care Coordination, Dialysis Funding, Treatment Options|

The Centers for Medicare and Medicaid Services (CMS) acknowledged patient concerns by delaying for two years its planned cut to the Medicare End Stage Renal Disease (ESRD) program. The Medicare agency’s decision didn’t give dialysis patients everything we asked for, but it does mean that nearly $2 billion slated to be cut from kidney care in 2014 and 2015 will remain available to treat patients. However, it also means that patient advocates must be vigilant for any signs that access to care is shrinking as providers anticipate cuts now scheduled to take effect in 2016. The Medicare ruling came in the [...]

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Has the ACA Expanded Medicare’s Immunosuppressive Drug Coverage for Kidney Transplant Recipients?

2024-03-29T02:08:08+00:00November 18th, 2013|Categories: Immunosuppressive Drug Coverage, Patient's Voice|

By Jim Myers, DPC Patient Ambassador. I had a conversation with my doctor last week. (My nephrologist, Dr. Vavilala, we call him Dr. V). He asked me if I had heard anything during my last trip to Washington, D.C. about an extension of coverage through the ACA to kidney transplant patients of the immunosuppressive drug coverage beyond the 36 month period that currently exists. This rang a bell in the back of my brain, so I decided to check it out. Every transplant patient or transplant candidate knows the current status of the law. If you are a kidney transplant [...]

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HOPE Act Moves to White House to be Signed into Law

2024-03-29T02:08:08+00:00November 13th, 2013|Categories: Access to Transplant, Article|Tags: |

The U.S. Congress took an important step Tuesday evening with House passage of the HIV Organ Policy Equity (HOPE) Act, which will allow research on donation of organs from deceased HIV-infected donors to HIV-infected recipients. Having been passed by the Senate in June, the bill is now positioned to move to the White House to be signed into law. The HOPE Act modernizes outdated federal law to reflect the current medical understanding of HIV infection and to allow for scientific research. For patients living with HIV, deceased donors with the same infection represent a unique source of organs. Passage of [...]

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Promoting Care Coordination for Dialysis Patients

2024-03-29T02:08:08+00:00October 10th, 2013|Categories: Advance Patient Choice, Article, Care Coordination|

Federal policymakers have long grappled with the problem of better coordinating care for Medicare beneficiaries. As the Medicare Payment Advisory Commission has noted, "Gaps exist in care coordination in fee-for-service Medicare because of the fragmentation of service delivery, the lack of tools to help communicate across settings or providers, and the lack of a financial incentive to coordinate care." Part of the problem is that the Original, or fee-for-service, Medicare largely froze in place mainstream medical and insurance practices as they stood in 1965, when the program was created. Many health policy thought-leaders believe that the problem of uncoordinated care has been [...]

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OPTN/UNOS Approves New Deceased Donor Kidney Allocation Policy

2024-03-29T02:08:57+00:00July 19th, 2013|Categories: Access to Transplant, Article|

The Organ Procurement and Transplantation Network (OPTN) and the United Network for Organ Sharing (UNOS) board approved a new kidney allocation policy that will substantially change the way deceased donor kidneys are distributed. Many components of the policy will benefit dialysis patients greatly. For example, measuring wait times from the initiation of dialysis will improve access to transplants for those patients who do not receive crucial kidney transplant education. The prior system measured wait times from when the patient signed up for a transplant. The new system will help those who are on dialysis longer get transplants sooner. DPC also supports improving [...]

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