We Need to Hear From You!
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?
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
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
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?
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
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 [...]
Promoting Care Coordination for Dialysis Patients
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 [...]