Dialysis Patient Citizens News
LETTER: Making a difference for kidney patients
DEAR EDITOR: I recently participated in my second advocacy day meetings as part of Dialysis Patient Citizens, and am still overjoyed with the discussions I had with several of our distinguished members of Congress and their staff. I spoke briefly about how my own experience as a dialysis patient took away so much of my independence, and what so many patients have to deal with daily just to stay healthy, on top of appointments and unforeseen hospitalizations. These can seriously affect patients, especially when dealing with hospital [...]
Rhode Island Passes Medigap Access Legislation
On Thursday, June 23, 2022, the Rhode Island General Assembly held the final vote leading to passage of two bills granting access to Medigap coverage for dialysis patients under age 65. Sponsored by Rep. Brian Patrick Kennedy (D-District 38), Speaker Pro Tempore, and Senator Dennis L. Algiere (R-District 38), Senate Minority Leader, H 7244 and S 2194 require that Medicare supplement policies be made available to any applicant under age 65 eligible for Medicare due to a disability or End Stage Renal Disease (ESRD). The legislative language in [...]
Supreme Court Erases Kidney Patients’ Insurance Protections
A U.S. Supreme Court ruling has nullified the law that protects dialysis patients from discrimination by insurers, threatening the system of financing kidney care that has stood for 40 years. The Court ruled that employer health plans may limit dialysis benefits. For four decades, employers understood the law as prohibiting limitations that only applied to dialysis. Some health benefit consultants encouraged a few small employers to disregard the law by paying no more than Medicare rates for dialysis. DaVita sued them, and one of the cases was [...]
Dialysis Patient Citizens Statement Following Supreme Court Decision in Marietta Memorial Hospital v. Davita
WASHINGTON, D.C., (June 21, 2022) -- Following the United States Supreme Court decision in the case of Marietta Memorial Hospital v. Davita, Dialysis Patient Citizens (DPC) Board of Directors President Andrew Conkling issued the following statement: “DPC is deeply disappointed by today’s Supreme Court decision,” said DPC Board President Andrew Conkling. “Congress long ago reaffirmed privately-insured patients’ right to continue on their employer-sponsored plan for 30 months. This played an important role in preserving patient choice and incentivizing insurers to detect and treat Chronic Kidney Disease. ESRD [...]
Aid dialysis patients
Families have a lot in common, and something mine shares is kidney disease. Both my late mother and I who have suffered from this have had to receive life-saving dialysis treatments that allowed our bodies to continue to function. At the beginning of my dialysis journey, I had insurance through my employer, which covered the costs of these pricey treatments. However, they took up most of my time and energy, and I inevitably had to leave my job. Being unable to work full-time is a persistent problem [...]
Letter: Medigap bill offers lifeline to young dialysis patients
Dear Editor: Starting dialysis at a young age was hard. I had only recently finished high school, and adjusting to life on dialysis when I was still a teenager was overwhelming. It was even more difficult because I didn’t have reliable access to affordable Medigap coverage for the costs Medicare didn’t pay. Not every state requires Medigap plans to be available to patients under 65, so unless you qualify for disability or another form of coverage, patients are on the hook for what Medicare doesn’t cover. Even [...]
Your Views: Wisconsin kidney patients need financial help
My life with kidney disease has been one filled with battles. In 2010, I had a double transplant surgery and received a new kidney and liver. Unfortunately, the transplant kidney failed three years ago, and I needed dialysis treatment. These life-saving treatments can be time-consuming, and patients often find themselves unable to work. Working and being on dialysis can be very hard on someone. I’m lucky that I have Medicare covering the majority of the costs and additional insurance paying for what Medicare didn’t before I turned [...]
Letter: Congress should follow NY’s lead on dialysis coverage
Finding out my kidneys were failing was shocking. During a surgery to remove a portion of one kidney affected by cancer, things took an unexpected turn. Rather than losing a small portion of function in one kidney, I was left with one kidney only functioning at 20 percent. Thanks to an excellent nephrologist, though, I was able to put off starting dialysis for a decade. Since then, two things that have helped a great deal are the flexibility of my home treatments and the access I’ve had [...]
Kidney Patients Struggling to Receive Coverage
My husband’s journey with kidney disease forever changed my life. Over the past five years, we have seen countless doctors, traveled many miles for medical appointments, and both of us had lifechanging surgeries. At age 39, my husband began dialysis treatments for his failing kidneys, a side effect of his lifelong battle with diabetes. We knew he would eventually need a kidney transplant but needed to get other health matters in order before that would be possible. Finally, my husband was ready for a kidney transplant, and [...]
Congress should OK Medigap expansion
I have fought an uphill battle with kidney disease for almost half my life. At 24, I started receiving dialysis treatment and three years later received a kidney transplant that kept me off dialysis for about five years. But unfortunately, I needed potent anti-rejection drugs that ultimately gave me cancer and weakened my immune system. Thankfully, I recovered from cancer but ended up back on dialysis, which I still receive. Part of the problem stems from the fact that my treatments haven't always been tailored to what [...]
Constituents on Dialysis Need Leader McCarthy’s Help
Editor, Being diagnosed with kidney disease when I was just 16 turned my life on its head overnight. Kidney failure can cause multiple medical complications. Partial loss of my vision and hearing, more than 17 years of dialysis treatments, infections, an enlarged heart, and eventually a kidney transplant have been just part of the journey. For all of these challenges, though, one hurdle I thankfully didn’t have to face was access to coverage. Since I was so young when I started treatment, my parents’ insurance helped pay [...]
What Patients Should Know About Value-Based Care
DPC is a strong advocate of Value-Based Care. Value-Based Care means that your primary providers accept a single payment or budgeted amount to cover all your medical needs. For instance, if you are in a program like Comprehensive Kidney Care Contracting (or CKCC, formerly known as the ESCO program) your dialysis provider and nephrologist take responsibility for all your care—not just kidney care but other conditions, such as diabetes, and other sites of care, such as hospitals. There are currently three types of value-based care programs that [...]
DPC Hosts Successful 2022 Congressional Advocacy Day
On Thursday, May 12th, DPC hosted its’ annual Advocacy Day when we connect patients, family members, and Partners in Care with their Members of Congress so they can tell their story with dialysis and advocate for legislative priorities that would help them. Once again, out of an abundance of caution, our advocacy day was virtual, but we were still able to have wonderful participation. This year we had 113 participants who participated in 113 meetings and represented 29 states. They talked with their Congressional offices about The Jack [...]
Dialysis, Kidney Transplant Patients Need Lawmakers To Help
Focal segmental glomerulosclerosis (FSGS) caused my kidneys to fail nearly 30 years ago. Since then, I’ve been on and off dialysis as FSGS and the treatments it requires have taken their toll on my health and several transplant kidneys. The treatment process and the costs associated with it have been egregious. The high cost of medications to keep transplant kidneys healthy makes them financially untenable for many patients, and dialysis comes with a heavy cost, too. That’s without factoring in the medical expenses due to the skin cancer and [...]
Dialysis patients under 65 face major cost hurdle
Starting dialysis felt like being swooped into a cage with no warning. At the height of quarantine during the COVID-19 pandemic, I found out the chemotherapy treatments for my breast cancer had contributed to my kidneys failing and I needed to start on dialysis immediately. The next two weeks were a lonely and frightening experience, and I wouldn’t have survived without my medical team’s quick work and my family’s support. After those initial two weeks in the hospital, I spent three months going through four-hour dialysis treatments [...]
Elevating Dialysis Patient Voices Bolsters State Advocacy Victories
As many 2022 state legislative sessions are winding down or have recently wrapped-up, it is a good time to update DPC members on state legislation important to dialysis patients. The participation of our Patient Ambassadors in DPC’s advocacy efforts has been really beneficial in educating legislators to help them make more-informed decisions on legislation that impacts End Stage Renal Disease (ESRD) patients. Improving access to affordable Medicare Supplemental Insurance (a.k.a., Medigap) plans is a top priority for DPC, and legislation was introduced in multiple states: Arizona, Kentucky, Louisiana, [...]
DPC’s Letter to Daniel Tsai, Deputy Administrator and Director of CMCS
Daniel Tsai, Deputy Administrator, and Director Center for Medicaid and CHIP Services Centers for Medicare & Medicaid Services 7500 Security Boulevard Baltimore, MD 21244 Re: Eligibility Redeterminations for Enrollees with Chronic Health Conditions Dear Mr. Tsai: When the Public Health Emergency ends and states resume making Medicaid eligibility redeterminations, up to 15 million enrollees are expected to lose their coverage. We are concerned that as many as one-quarter of those individuals may be receiving treatment for chronic diseases, and that treatment might be interrupted by a lapse in [...]
DPC Urges Continuity of Care for Medicaid Enrollees with Chronic Health Conditions When Eligibility Redeterminations Resume
Two years ago, Congress mandated a pause on Medicaid eligibility redeterminations during the COVID Public Health Emergency. The emergency declaration is expected to end soon, and states will again require Medicaid enrollees prove their eligibility. As many as 15 million enrollees are expected to lose their coverage, mostly because they have accepted higher-paying jobs, but others may slip through the cracks due to address changes and the like. DPC has written to the federal Medicaid director asking that CMS and the states make a special effort to ensure [...]
Guest: National Kidney Month provides reminder of cost hurdles for dialysis patients
The month of March marks National Kidney Month in the U.S., an opportunity to bring awareness to something that affects more than one in seven adults, and a chance to reflect on the struggles kidney patients across the U.S. face every day. Currently, kidney patients face an uneven playing field, and a lot still needs to be accomplished in order to ensure that all patients have access to the care they need. It’s an unlevel field that I’ve been operating on for most of my life. I was [...]
Support S 2194
March 28, 2022 The Honorable Joshua Miller, Chair The Honorable Bridgett G. Valverde, Vice Chair The Honorable Valarie J. Lawson, Secretary Members, Senate Health and Human Services Committee Rhode Island General Assembly RE: Support S 2194 Dear Chair Miller, Vice Chair Valverde, Secretary Lawson, Members of the Committee: As a kidney dialysis patient residing in Woonsocket, a volunteer Patient Ambassador of Dialysis Patient Citizens and on behalf of the more than 1,800(i) fellow Rhode Island residents with End State Renal Disease (ESRD), I write to ask your [...]