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News & Events2019-01-04T17:31:24-05:00

DPC’s State Advocacy Efforts Flourish with Elevated Voice of DPC Patient Ambassadors

April 25th, 2022|

Image: Medigap champion Kentucky State Rep. Tom Burch and Elizabeth Lively, DPC Eastern Region Advocacy Director By Kelly Goss, J.D., LL.M., Western Region Advocacy Director and Elizabeth Lively, Eastern Region Advocacy Director, Dialysis Patient Citizens (DPC) It’s been a busy start in 2022 for DPC’s state advocacy efforts. Many states are holding shorter legislative sessions due to the upcoming primary elections, and several bills impacting dialysis patients have been introduced and are moving quickly through the legislative process. Legislation to expand Medigap access has been introduced in Arizona, Kentucky, Louisiana, Maryland, Nebraska, New Jersey, Rhode Island, Vermont, and Wisconsin. Improving access to affordable Medicare Supplement (Medigap) plans is a top policy priority for DPC, and [...]

Falling by the Wayside? Falls Prevention in Dialysis

April 25th, 2022|

By Laura Plantinga, PhD, Bernard Jaar, MD, MPH, and C. Barrett Bowling, MD, MSPH Why are dialysis patients at particular risk for falls? Studies show that approximately one-quarter of dialysis patients fall every year, meaning that they are about three times more likely to fall in any given year, compared to the general population. While older age certainly plays a role, there are several other factors that put dialysis patients — regardless of age — at higher risk for falls. In fact, most falls probably result from a combination of factors, usually a combination of long-term “predisposing” risk factors and short-term “precipitating” factors. For dialysis patients, predisposing factors include health conditions like nerve [...]

The Courage to Self-Cannulate – Taking Control Means Less Pain, More Independence

April 25th, 2022|

By Michelle Carver, Vice President Clinical Service Initiatives at Fresenius Kidney Care If the idea of self-cannulating every time you dialyze seems impossible, you are not alone. Many people fear needles, especially the large ones used for dialysis. But trust me, when you learn to do it, you’ll wonder why you ever doubted yourself. It gives you control, may make your access site last longer and, believe it or not, hurt less. One of my dialysis patients compared it to putting a cotton-tipped swab in your ear – would you rather do it yourself or have someone else do it? Only you – not your care provider – can feel both ends of [...]

To Change or Not to Change?

April 25th, 2022|

By Dr. Stacy Ogbeide, Board Certified Clinical Health Psychologist “Why is change so hard?” I hear this statement often from the patients I see in primary care. From taking a medication as prescribed to starting an exercise program – change is hard. Having a chronic health condition like Chronic Kidney Disease (CKD) can be difficult because, like many other chronic health conditions, CKD is heavily influenced by lifestyle and behavior modifications. What is a person to do? “I just need to do it.” “I will change when I want to change.” “I will start next week.” “I want to start that walking plan, but it hurts when I move so I stopped [...]

Wellness and Mental Health While Living with Rare Disease

April 25th, 2022|

  By Maya Doyle, MSW, PhD Cystinosis is a rare lysosomal storage disorder (1) that is typically diagnosed in childhood and typically results in kidney failure and progression to dialysis and/or kidney transplant. In the United States, a disease is considered rare if it is affects fewer than 200,000 Americans. According to the National Institutes of Health (NIH), there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans – this means 1 in 10 people may be affected by a rare condition (2). The experience of a rare condition can be very isolating because of the lengthy time to get a diagnosis, the lower number of people with a specific [...]

My Experience as a Kidney Patient in CKD, Dialysis, and Transplant

April 25th, 2022|

By Orlando A. Torres After a 30-year battle with chronic kidney disease (CKD), in 2016 I had Stage Five kidney failure. This was the end of a three-decade battle which took countless hours of treatment. For years, I had been followed medically for CKD, having a special test done monthly and eating a special diet. As a CKD patient, my condition affected other organs in my body. The number of regular activities I could do also declined, but I never quit and refused to accept those limitations. I never let CKD limit what I did. I think it is important to try to work through the potential limitations of CKD to have a [...]

Living with Chronic Illness and Bipolar: A Story of Resilience

April 25th, 2022|

By Ashley Abedini I opened my eyes to find myself lying on a hospital bed. This was not exactly a new experience for me; I have a chronic illness called Cystinosis, a metabolic disorder that has led to health issues, most notably kidney failure. As a result of this, I had to go on dialysis for about a year, leading to frequent hospital stays. I was diagnosed at just six months, so it is something that has been a pivotal part of my life. The hospital bed, cold blank walls, and countless nurses were a familiar sight. This hospitalization was quite different though. I signed myself in that night for what I would [...]

How to Move Out of Loneliness and Isolation

April 25th, 2022|

By Rebekah Palmer Oftentimes, people whose bodies live with rare diseases and chronic illness are not only separated from their peers and society, but feel separate from their peers and society. This is especially true regarding peers who are considered able-bodied, as well as a society that is inherently ableist. People who do not live with chronic illness do not always know the existence that is lived regularly with hospital and clinic visits, and the consumption of treatment and medications. It can be what we see and hear on media and online when it comes to how disabled and rare populations are spoken about by society. It can even be aspects of our [...]

New Medicare Initiative to Cover Costs of OTC COVID-19 Tests

April 22nd, 2022|

Beginning April 4, 2022, Medicare now covers the cost of up to eight over-the-counter (OTC) COVID-19 tests per calendar month for Part B and Medicare Advantage participants. It is important to note that Medicare will not cover OTC COVID-19 tests for patients who only have Medicare Part A (Hospital Insurance) coverage, but they may still be eligible for free tests through other programs. Medicare will cover the costs of these tests until the COVID-19 public health emergency (PHE) comes to an end. Patients can get the tests through any participating pharmacy or health care provider. A partial list of participating pharmacies can be found at, or by calling your pharmacy or health care provider. [...]

Living With Painful Diabetic Peripheral Neuropathy (PDPN)

April 12th, 2022|

Living with diabetes can be a challenge all on its own, in addition to the complications that can come with it. Painful diabetic peripheral neuropathy (PDPN) is a common type of diabetic neuropathy that occurs in one-fourth of those with Type II Diabetes and is characterized by feelings of pins and needles, prickling, tingling, numbness, or shooting pain, most commonly in the feet. The American Chronic Pain Association has many PDPN resources for both patients and caregivers. There is a PDPN Conversation Guide, which can help patients communicate with their healthcare provider about the location, specific feelings, and severity of their pain; a guide on PDPN Treatment Goals to help patients rate pain, activity level, [...] Launched by the White House

April 1st, 2022|

On Wednesday, March 30th, the White House launched a new website,, that will be its one-stop shop for questions on masks, treatment, vaccines, testing, and where to find and order resources. Users can search by county to access the latest COVID-19 Community Level in their area, and can click on links that take them directly to the CDC’s site for guidance on staying up-to-date with vaccines, when to get tested, and additional precautions that can be taken for those at high risk for severe illness, such as those who are immunocompromised. The site is designed to be accessible to a large number of people, with the option to read it in English, Spanish, or [...]

It Was Already Hard to Find Evusheld, a Covid Prevention Therapy. Now It’s Even Harder

March 31st, 2022|

By Hannah Recht March 17, 2022 As immunocompromised people across the country work to get Evusheld, a potentially lifesaving covid therapy, several hundred providers of the injections were removed from a federal dataset on Wednesday night, making the therapy even harder to locate. White House officials had announced March 15 that a planned purchase of more doses would have to be scaled back without new federal funding. And federal and state health departments aren’t making it easy to find, leaving patients whose hospitals say they don’t have enough of the drug to write desperate tweets and Facebook posts seeking the shots while unused vials sit in the refrigerators of other providers. Few states list on [...]

How to Care for Yourself When You’re a Caregiver

March 8th, 2022|

Being a caregiver is a huge responsibility – whether you’re a parent, spouse, or sibling, being fully responsible for the well-being of someone else can be a full-time job. When you also need to juggle work or raising children as well, it is no wonder that the caregiver’s needs are often what gets neglected. Studies have shown that no matter the age, sex, race, or ethnicity of the caregiver, all are more likely to be sleep-deprived, unable to exercise regularly, and have poor eating habits.  They are also less likely to keep up with doctor’s appointments for themselves or allow themselves to rest when they get sick. While it can seem overwhelming to try to [...]

Identifying Health Misinformation

March 1st, 2022|

Over the last two years, people have been exposed to a lot of information, from many different sources, regarding COVID-19. There are many reputable sources for health information, such as the Center for Disease Control (CDC) and World Health Organization (WHO). However, there has been a recent rise in health misinformation, which caused confusion about vaccination and other public health measures, such as masking and social distancing. Although health misinformation is not new, with more people having access to the internet and various social media platforms, it has spread in recent years at an unprecedented rate. In order to keep yourself, your loved ones, and your community safe and healthy, the US Surgeon General has [...]

COVID-19 and Patients with Kidney Disease on Dialysis

February 25th, 2022|

By Alan Kliger, MD Updated March 18, 2022 I am writing this mid-March 2022, as the last peak of COVID infection with the Omicron variant has rapidly fallen in every US state, but wastewater analysis has shown places in the US where virus infection in some communities is rising again. A new sub-variant, BA.2 is making up about 23% of cases. Abroad, the United Kingdom is seeing increasing hospitalizations with COVID infection, and many locations in the far east have raging infections. The effects of the surge in Omicron cases around the world this past winter have deeply affected patients on dialysis … effects likely to last well into the spring of 2022, [...]

Effective Communication with Your Health Care Team

February 24th, 2022|

Print out the flyer: color | black and white Presented by Stacy Ogbeide, PsyD, ABPP, CSOWM, Board-Certified Clinical Health Psychologist, UT Health San Antonio March 24, 2022 2:00 pm ET, 1:00 pm CT, 12:00 pm MT, 11:00 am PT During this webinar, you will learn about: The importance of effective communication with your health care team Barriers that impact effective communication Effective communication skills and be able to identify one (1) to use with your health care team at your next health care appointment View the Recording Complete the Survey Create your own user feedback survey Stacy Ogbeide, PsyD, MS, ABPP, is the Director of Behavioral Health Education in the [...]

Up-to-Date vs. Fully Vaccinated – What to Know About COVID-19 Vaccination

February 7th, 2022|

With Omicron continuing and the possibility of new variants in the future, it is important to not only be fully vaccinated against COVID-19, but also receive a booster dose, when eligible, so that you are up-to-date. Someone is considered fully vaccinated when they have received their primary series of COVID-19 vaccines. In order to be considered up-to-date, a person has to have received all recommended COVID-19 vaccines, including any booster(s) when eligible. The recommendations provided by the CDC will be different for everyone, depending on age, health status, and when you received your first vaccine. It is important to note that people who are immunocompromised may need an additional dose as part of their primary [...]

Over-the-Counter COVID-19 Tests to be Covered Through Medicare

February 4th, 2022|

Beginning in early spring, those with either Original Medicare or Medicare Advantage (MA) will be able to get over-the-counter COVID-19 tests for free. The tests will be available through eligible pharmacies and other participating entities, with Medicare beneficiaries being able to get up to eight FDA approved or authorized tests per month. This announcement is part of the Biden-Harris Administration’s ongoing efforts to expand access to free testing for Americans. Until this option is available, people with Medicare can access free tests through the following channels: Request four free at-home tests that will be delivered to your house through: Find a community-based testing site close to you at: Receive a lab-based PCR or [...]

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