News & Events
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Contents:
To Change or Not to Change?
By Dr. Stacy Ogbeide, Board Certified Clinical Health Psychologist www.stacyogbeide.com “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
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
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
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
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 [...]
The Kidney Citizen Issue 15
To Change or Not to Change?, How to Move Out of Loneliness, Wellness and Mental Health While Living With a Rare Disease, and more!
New Medicare Initiative to Cover Costs of OTC COVID-19 Tests
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 https://www.medicare.gov/medicare-coronavirus, or by calling your pharmacy or health care provider. [...]
Living With Painful Diabetic Peripheral Neuropathy (PDPN)
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, [...]
COVID.gov Launched by the White House
On Wednesday, March 30th, the White House launched a new website, https://www.covid.gov/, 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
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
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
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
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, [...]
Up-to-Date vs. Fully Vaccinated – What to Know About COVID-19 Vaccination
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
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: https://www.covidtests.gov/ Find a community-based testing site close to you at: https://www.hhs.gov/coronavirus/community-based-testing-sites/index.html Receive a lab-based PCR or [...]
How to Have Difficult End-of-Life Conversations
Although death is an inevitable part of life, it can be a difficult subject to discuss with loved ones. We worry about upsetting our family or seeming too morbid, but having these conversations can actually be extremely helpful in minimizing the stress of loved ones once we’ve passed. Especially with the COVID-19 pandemic, people may not have as much time from receiving a diagnosis to when they die, and many families have found themselves in situations where they don’t know their family member’s last wishes. For these reasons, it has become even more important to discuss advance care planning with our loved one. Typically, this includes a living will, a health proxy, and what medical [...]
New “No Surprises Act” Aims to Eliminate Surprise Medical Bills
On January 1st, a new act known as the No Surprises Act, went into effect to protect people with group and individual health insurance from receiving unexpected out-of-network medical bills. This means that individuals with private health insurance are protected from receiving additional bills for emergency services, services from out-of-network providers at in-network facilities, and out-of-network air ambulance providers. Uninsured or self-pay individuals have new resolution opportunities if they receive a medical bill that is significantly higher than the good faith estimate they were provided, and there is also a new dispute resolution process for payment disputes between plans and providers. For more information on the No Surprises Act, read the factsheet from CMS: https://www.cms.gov/newsroom/fact-sheets/no-surprises-understand-your-rights-against-surprise-medical-bills, [...]
Depression and Dialysis – A Look at Two Potential Treatments
It is not uncommon for patients receiving dialysis treatment to have depression, though it can be hard to distinguish the symptoms of depression from those of kidney failure. Trouble sleeping, poor appetite, headaches, and fatigue are all symptoms of both conditions, leaving dialysis patients to wonder not only if they have depression, but if treatment would help to improve the symptoms they are feeling. Talking to your kidney care team is a great first step to figuring out who you should talk to about whether you have depression, along with figuring out potential treatment options. Though there are many ways to treat depression, a recent Patient-Centered Outcomes Research Institute (PCORI) study looked at two [...]
Research Report Finds Minimal costs to enacting Jack Reynolds Memorial Medigap Expansion Act
By Jackson Williams, DPC Vice President of Public Policy A research report commissioned by DPC has found that passage of the Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) would add only minimal costs to the federal treasury and to seniors’ Medigap premiums. H.R. 1676 would require insurers to make Medigap plans available to End-Stage Renal Disease (ESRD) patients under the age of 65. The report from Health Management Associates (HMA) calculated the costs associated with changing the law. Under current federal law, insurers are not required to offer Medicare Supplemental Insurance (also called Medigap) plans to patients under 65 years of age. While Medicare pays for roughly 80 percent of an individual's healthcare costs, patients are required to cover the remaining 20 [...]
DPC’s New Report Card on Medigap Coverage Helps ESRD Patients Understand their Medicare Supplemental Insurance Options
By Kelly Goss, J.D., LL.M., Western Region Advocacy Director If you’re a dialysis patient under age 65 looking to purchase a Medigap plan, DPC’s new interactive Medigap Report Card will help you understand the availability of Medigap coverage in your state. Medicare Supplemental Insurance, or Medigap, is provided by private insurance companies to help Medicare enrollees cover their out-of-pocket “gap” costs – such as copays, coinsurance, and deductibles – not covered by Original Medicare. Providing accessible and affordable Medigap coverage is critical to ensuring patients with End Stage Renal Disease (ESRD) can fully cover the cost of their care, since Medicare alone only pays for 80 percent of an individual’s health care costs. Medigap coverage [...]
