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DPC Urges Medicare Agency to Withdraw Proposal That Could Weaken Protections for Transplant Patients

2024-03-29T02:08:06+00:00March 6th, 2014|Categories: Access to Transplant, Article, Comment Letter, Immunosuppressive Drug Coverage, Improve Access to Care|

Dialysis Patient Citizens (DPC) weighed in against a Medicare proposal that would complicate some transplant patients’ access to immunosuppressive drugs. Medicare Part D, like other private health plans, uses drug formularies to keep down costs. Formularies favor certain drugs over others in exchange for discounts. Patients are encouraged to ask their doctors to first prescribe medications on the formulary to take advantage of lower co-pays. Often a patient’s condition can be addressed by a drug on the formulary, but many transplant patients find that “first-line” immunosuppressive treatments aren’t effective or have serious side-effects. For this reason, DPC told CMS: “Immunosuppressive [...]

We Need to Hear From You!

2024-03-29T02:08:07+00:00February 7th, 2014|Categories: Article, Immunosuppressive Drug Coverage, Increase Quality of Care, Treatment Options|

DPC is currently working on two initiatives that require your input! First, the National Quality Forum is conducting a study of "Person-Centered Care" and is looking for patient input. DPC has volunteered to collect patient viewpoints on this subject, and we are inviting our members and other dialysis patients to share your experience with and insights into the care you've received. The National Quality Forum is an organization that endorses the standardized healthcare performance measures that are used by Medicare and other insurers to monitor quality. Its goal in this project is to figure out how to assess whether care is person-centered, which may [...]

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 [...]

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 [...]

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 [...]

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 [...]

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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