Advocacy for Better Dialysis
Congressional Briefing: Patient Safety & Home Dialysis - Unnecessary Risks
Speakers for this 30-minute briefing included Paul Conway from AAKP, Dr. Dheerendra Kommala from Emergency Care Research Institute (ECRI), and June Hurst from Redsense, an FDA-approved device that monitors vascular accesses for venous needle dislodgement. The briefing for congressional staff sought support for H.R. 3118.
CMS Published Final Rule for the 2024 ESRD PPS and QIP
The ESRD PPS base payment in 2024 will be $271.02. Clinics must report “time on the machine” per treatment, with an exception for clinics that close for disasters to claim the low volume payment adjustment. In the 2024/payment year 2026: the QIP depression screening and follow-up reporting measure becomes a clinical measure and CMS is removing measures for UFR and fistula rates. To address health equity, in payment year 2027 (calendar year 2025), CMS will add a measure for Social Drivers of Health and one for Screen Positive Rate for Social Drivers of Health.
H.R. 3118 Home Dialysis Risk Prevention Act for Venous Needle Dislodgement Devices
If passed, this bill would provide Medicare coverage for venous dislodgement devices used for home HD.
Protect Kidney Patients’ Access to Life-Saving Medications
This hour-long webinar by Home Dialyzors United discussed CMS’ proposed change in coverage of drugs in 2025 and the risks to patients of including drugs such as phosphate binders in the bundle. The webinar encourages patients to advocate for what they need with their clinics and with CMS. The final regulation will be published this fall.
Support Medicare Coverage of Venous Needle Dislodgement Monitors for Home HD
The Home Dialysis Risk Prevention Act, H.R. 3118, is a 3-page bill introduced by Rep. Adrian Smith (R-NE) and cosponsored by Rep. Melanie Ann Stansbury (D-NM). Read the bill. If you support it, ask your representative to be a cosponsor. There is no companion bill in the Senate, yet, so if you support this, write to your senators, too.
The Inflation Reduction Act reduces some Part B drug costs
Patients may see cost savings if they take any of the 43 Part B drugs linked in this CMS press release. Drug companies will have to pay rebates if they increase costs more than rate of inflation so coinsurance could be less than 20%.
Want to advocate with your elected official(s)?
Check out the National Kidney Foundation’s “Your Go-To-Guide for a Successful Kidney Advocacy Meeting that includes a step-by-step (Who, What, When, Where, Why) and video.
Awareness is Step 1: Racial Gaps Remain in U.S. Home Dialysis
A Duke study analyzed data from more than 1 million U.S. ESRD patients and found rates of home dialysis that were about 1/3 lower for patients of color than white patients.
American Kidney Fund Pushes to Re-Introducte the CARE for All Kidneys Act
In 2021, the Coordination, Accountability, Research, and Equity (CARE) for All Kidneys Act was introduced, but never got out of the Health Subcommittee. If reintroduced and passed, this bill would fund research and an action plan to address inequities that raise the risk for poor outcomes and limit access to home dialysis and transplants for rural and minority patients.
Baxter Advocates for Change to the Pharmacy Practice Act in Hawaii
Baxter’s IL pharmacist oversees shipment of supplies to patients’ homes. In HI, a second licensed pharmacist must oversee PD supply distribution. Eliminating the second pharmacist (as 34 states have done) would make it faster and cheaper to get supplies to HI patients so more can do PD at home.
Remote Nunavit-dwelling Canadians No Longer Must Move to Get Dialysis
First Nations and Inuit people with kidney failure who live in the sparsely populated arctic Canadian territory of Nunavut could only get dialysis by moving to distant Winnipeg—until doctors lobbied for the government to pay for PD and to license Manitoba and Nunavut nurses to monitor a handful of these patients.
Bloomberg Opinion: Home Treatments can Reduce Dialysis Spending
The availability of cheaper, alternative forms of treatment for kidney disease, such as at-home dialysis machines, remains limited, in part because of industry resistance, claim the editors.
Dialyzors Must Have Choices in Vascular Access Care
Home Dialyzors United Executive Director, Nieltje Gedney, had an opinion piece published in The Hill newsletter, advocating for CMS to restore the 20% cut to the Physician Fee Schedule. The cuts threaten vascular access care, as well as care for other diseases, such as cancer.
Senator Warner Introduced the Bipartisan Kidney Health Connect Act
If passed, the bill would let dialysis clinics be originating sites for telehealth services and keep patients from being charged extra.
Innovate Kidney Care (IKC) Campaign Releases White Paper
The paper, Recommended Changes to Conditions for Coverage to Improve and Modernize Kidney Care, examines the role of the Medicare Conditions for Coverage (CfC) as one of the major barriers to home dialysis.
People Under Age 65 Need Access to Medigap Policies in Every State!
Dialysis is challenging enough without having to worry about how to pay the 20% of costs that Medicare will not cover. Ask your representatives to support the Jack Reynolds Memorial Medigap Expansion Act, if they haven’t already.
Congressional Tri-Caucus Demands Action
Congress must act urgently to direct CMS not to move forward with a clinical labor update and to stop 20% cuts to vascular access services.
Home Dialyzors United Teams Up with Dialysis Vascular Access Coaltion
“HDU is excited to team up with DVAC to ramp up advocacy efforts to increase the voice of dialysis patients who receive their care at home,” noted HDU Executive Director, Nieltje Gedney. “As a solo home hemodialyzor for over eight years, I know that nothing is more important to my health and safety than my lifeline—a working fistula.”
Outset Tablo Approved for TPNIEs Add-on Payment
CMS approved Outset Medical's Tablo hemodialysis system as the first device to receive an add-on payment under a recently enacted end-stage renal disease (ESRD) program (TPNIE). With shorter recovery times and simple set-up, the Tablo gets people back to their lives sooner.
Jack Reynolds Memorial Medigap Expansion Act
After an accident at age 4 caused his kidneys to fail at 22, Jack Reynolds required life-long dialysis, which propelled him to become an advocate for his fellow warriors until he passed away at age 67. It bothered Jack that in some states, Medigap plans are not available for people under age 65. This bill honors his memory and would address this gap in coverage.
Improving Access to Home Dialysis Act Introduced
Bipartisan legislation has been introduced in Congress to have Medicare reimburse trained staff to visit home dialysis patients and help with home dialysis, to look at racial disparities, to ensure that all kidney patients are educated about home dialysis options early.
Home Dialyzor Advocates for Medigap Expansion Bill for Under 65s
Richard Muehlbauer finds that even with Medicare and Medigap, he has out of pocket costs for his home HD. He supports the Jack Reynolds Memorial Medigap Expansion Act, a bipartisan bill that would expand Medigap coverage to dialysis patients who are under 65.
Innovate Kidney Care Launches Campaign To Improve Home Dialysis Options
Nine industry companies kicked off a new campaign to increase patient options for home dialysis. The group aims to advocate with CMS to modernize the ESRD Conditions for Coverage to remove barriers, expand training and support, improve transitions, relieve administrative burdens, and allow training to be offered in multiple settings.
H.R. 1676 Bill Ensures that Dialysis Patients Can Access Life-Saving Care
Congress is working on the Jack Reynolds Memorial Medigap Expansion Act which will open up Medigap coverage to dialysis patients under 65. (Editor’s note: This is so needed!)
Outset Medical Video for Investors
Outset, Inc. announced that members of management will participate in a fireside chat at the BofA Securities 2021 Virtual Health Care Conference in a live and archived webcast of the fireside chat will be available on the “Investors” section of the Outset website at https://investors.outsetmedical.com/.
Starting Dialysis Gradually
Dr. Kam Kalantar says transitions to dialysis, including home dialysis, should happen gradually, with an incremental approach—up to 2 sessions a week. The slow start helps patients transition onto dialysis, while preserving residual renal function and providing them with choices.
Home Dialyzors United (HDU) Premiers “The Faces of Home Dialysis” Video on World Kidney Day
HDU interviewed 6 dialyzors who had been on home dialysis for more than 10 years to learn what was important to them.
NKF Calls on New Administration to Prioritize Kidney Disease in the First 100 Days
Kidney disease is a public health crisis that receives inadequate funding compared to its fiscal impact, so the NKF is calling on the new Biden-Harris Administration to make it a top priority in the first 100 days. Their request: resources to slow progression of CKD to kidney failure, address knowledge gaps and health disparities, and build on the pillars of the Advancing American Kidney Health Initiative.
CMS Approves Add-On Payment For Innovative Home Dialysis Equipment
A new Medicare rule will create incentives for companies to develop new home dialysis equipment. The added payment is intended to help grow home therapies.
Medicare Payment Changes to Support Innovation and Home Dialysis
As requested by community advocates, Medicare IS expanding the transitional add-on payment adjustment for new and innovative equipment and supplies (TPNIES) to cover new home dialysis machines.
7th Annual Kidney Patient Summit Went Virtual
Advocates representing nearly all 50 states shared their stories and urged their Congressional delegations to support public policy that advance kidney disease prevention, early detection, treatment, research and access to transplants, including living organ donation.
TEPNIEs Brings New Technology to Home Dialysis
NKF strongly supports TPNIES. For too long, dialysis patients have not had access to the kind of advances in medical science and technology that are common to every other part of our healthcare system.
CMS to Broaden Eligibility for Home Dialysis Innovation Payments
Just for home dialysis machines, CMS proposes to increase eligibility for the transitional add-on payment adjustment for new and innovative equipment and supplies (TPNIES). The aim is to increase access to the latest technology for PD and home HD.
Former Home Dialysis Patient Advocates for BETTER Kidney Care Act
Setting up a national system to coordinate kidney care and make it easier for nephrologists to communicate will ease patients’ lives, says Dortha Pugh-Thompson, who now has a transplant.
Home Dialysis Is Growing, Says Dr. Thomas Golper
At the Southwest Nephrology Conference in March, Dr. Golper said that the chances that patients will succeed on a home therapy will improve if nephrologists do their part to individualize options based on patients’ needs and goals. “Most of us think patients need to first learn about the therapy,” he noted. “I think that before they learn about the therapy, we have to learn about them.”
Nephrologist Article Calls for Additional Incentives to Drive More PD
Certain stakeholders were left out of the financial incentives to grow PD in the ESRD Treatment Choices (ETC) model, asserts two nephrologists. Surgeons who place PD catheters, hospitals, assisted PD, nurse training, standard education for stage 4 CKD, and Project ECHO to disseminate expertise from centers of excellence to smaller ones should all be incentivized as well.
Kidney Care Partners Call on Congress to Protect Patients from COVID-19
KCP is asking Congress and the Administration to protect vulnerable patients by ensuring that dialysis clinics have priority for equipment and supplies, paying for urgent start PD and staff-assisted home HD, and more.
COVID-19 Telehealth Waivers Help Providers Care for Patients
A CMS waiver is allowing a range of providers, such as doctors, nurse practitioners, clinical psychologists and licensed clinical social workers to offer telehealth to their patients—and providing flexibility to reduce or waive cost-sharing for telehealth visits paid by federal health care programs
ADC Keynote Speaker Skeptical that Executive Order Goals Will be Met Via Policy
Brent W. Miller, MD, does not believe that policy goals with carrots and sticks will get us to 80% of new ESRD patients to home dialysis or a kidney transplant by 2025. Speaking at the Annual Dialysis Conference, Miller noted that physician champions and increased numbers of home dialysis nurses will be vital—and that home dialysis retention is at least as challenging as recruitment.
Tips on How to Advocate
Learn 20 terrific advocacy tips to help patients make their voices heard in 2020 and fight for their rights from the Chronic Disease Coalition.
California Dialysis Cost-savings Bill Temporarily Halted
A recent court decision placed an injunction on implementing HB 290 into law due to potential risks to 3,700 patients. The law would prohibit dialysis providers from making a profit from insurance premiums paid by a third party—typically the American Kidney Fund—in an effort to lower costs to the state.
Follow the Money…to PD
An analysis of more than 600,000 U.S. dialyzers finds that use of less-costly and more patient-friendly PD is thus far the big winner after a 2011 CMS policy change favoring PD reimbursement. There were gains in patients starting on PD, switching to it from HD, and staying on PD.
MEDPAC and Others Try to Apply Brakes to the AAKHI ETC Model
“Serious methodological flaws” was the reaction of many of the 330 comments to the ESRD Treatment Choice model suggested to implement the Advancing American Kidney Health Initiative. The Medicare Payment Advisory Commission (MEDPAC) asked CMS Administrator Seema Verna to go back to the drawing board.
AAKHI Executive Order Gives Hope to Home Dialysis Supporters
Find out what Nieltje Gedney from Home Dialyzors United and John Bayton, a two-time kidney recipient think about the AAKHI.
Comment on the AAKHI Until September 16th
Now that the Advancing American Kidney Health Initiative has been published in the Federal Register, there is a window for comment until 11:59 p.m. (Eastern time), Monday, September 16. Visit this page to type in a comment or upload a Word document or PDF.
Thank You, Sponsors! Home Dialysis Central Celebrates 15 Years of Advocacy
Proposed KCP Bill Would Empower Kidney Patients and Improve Access to Care
Kidney Care Partners has not give up—the Chronic Disease Improvement in Research and Treatment Act of 2019 (S.1676) would help more people get predialysis education, study use of palliative care, expand access to care in underserved areas, improve care coordination between hospitals and clinics, create incentives for new technologies and drugs, improve patient decision making, and guarantee access to a Medigap policy for ESRD beneficiaries of any age.
Thought Leader Tom Golper Calls for a National Home Dialysis Strategy
At last week’s NKF Spring Clinical meeting in Boston, Dr. Golper noted that patient and clinician priorities for ESRD treatment do not match—and we must listen to the patient’s voice. Expansion of home-only clinics, and technologies for care and communication are vital as well.
Patients Speak Out - Article Two
In two journal articles published this month, patient advocates wrote about patient engagement in ESRD research—and why more dialysis is better.
Patients Speak Out - Article One
In two journal articles published this month, patient advocates wrote about patient engagement in ESRD research—and why more dialysis is better.
Is Daily Home HD Safe from the MACs?
Wisconsin Physician Services, one of 7 Medicare Administrative Contractors (MAC’s) may add the language, “Some patients due to chronic or long-term conditions may require dialysis that exceeds the usually covered 14 treatments per month.” If this language becomes part of the final regulation, it would be a win for the 400+ advocates who contacted the MACs to protest the proposed elimination of extra treatments.
Home Dialysis is Mainstream! NKF Holds Meetings to Encourage It
A year ago and again in November, the NKF held Home Dialysis Conferences to discuss how to overcome barriers so more patients will dialyze at home.
RPA Says Action is Needed on MACs
The Renal Physicians Association is calling for legislative changes to the process Medicare contractors (MACs) use to decide what will and will not be covered—such as frequent home HD. The group wants the MACS to provide an evidence summary when they announce a draft local coverage determination, so stakeholders can react effectively.
Align the Incentives to Increase Home Therapies
The always-eloquent Tom Golper, MD, outlines a brief history of factors influencing the use of home therapies—with suggestions to help CMS and Congress realign incentives to increase use of options that are patient-centered and improve outcomes.
Innovation Through KidneyX
ASN and AAKP advocates have been on the Hill asking for support for KidneyX, a public-private partnership that is a unique, patient-centered solution to reduce barriers hindering innovation in the prevention, diagnosis, and treatment of kidney diseases. The initiative will focus on development and commercialization of next-generation dialysis products.
Dialysis PATIENTS Act: Nay
Non-profit dialysis company DCI and a Montana social worker discuss why they believe the act is NOT in patients’ best interests and would benefit only large dialysis companies.
Dialysis PATIENTS Act: Yea.
Fresenius supports legislation to modernize the healthcare system and provide dialysis patients the opportunity for value-based, integrated care, vs. fee for service.
New Act Could Expand Access to Telemedicine for Home Dialysis
CHRONIC Care Act would expand the originating sites for monthly clinical assessments to include freestanding dialysis facilities and patients’ homes, and lift geographic limits, starting in 2019. Home dialysis patients would still need a face-to-face visit with a nephrologist at least once every 3 months.
Beam Me Up, Dialyzors
Does telehealth work in dialysis? We don’t know yet, but an expert group met in Vienna, Austria to discuss the idea.
Kidney Health Initiative Involves Consumers
This public (FDA)/private (ASN) partnership obtains patient input throughout the lifecycle of approving new medical devices, including how patients can influence design, help to plan and implement clinical trials, and impact regulatory decisions.
In the Ides of March: National Kidney Month and World Kidney Day
Dr. Alok Agarwhal’s blog post focuses on the role of the US obesity pandemic in driving diabetes, high blood pressure—and chronic kidney disease.
How to Change “Adequate” Dialysis to Optimal
Adequate dialysis could change to optimal dialysis with one word: from payment per dialysis treatment to payment per treatment hour.
From the Patient Perspective.
Understanding the role of patients’ belief systems can guide medical professionals to help develop patient-centered, personalized treatment plans.
Let’s Hear it for the Patients!
When dialysis patients partner in research, their “experiential” knowledge is valuable and meaningful.
HDU critiques NIPRO needles in letter to FDA
Home Dialyzors United members know dialysis needles—they use them several times a week. The group challenged the “substantial equivalence” determination of NIPRO needles this month for a variety of reasons in a letter to the FDA. See the NIPRO response below.
What did Home Dialyzors United write to Marilyn Tavvener?
HDU believes that boosting the home dialysis training payment to clinics can help boost home therapies as well, and commented on the proposed rule for the Quality Incentive Program (QIP).
Meet Home Dialyzors United's new board members
Harvard grad and high school science teacher Benjamin Ruback, who has used almost every kind of dialysis and home HD RV traveler Jim Smith are both articulate, passionate advocates of home therapies and exciting additions to the HDU Board of Directors.
Aggressive target could boost US home dialysis
NN&I offers a concise analysis of the Medicare cost benefits to US dialysis clinics of offering home treatments—all of which have helped. A bit. Setting an actual target for home therapies might just boost the momentum.
Fresenius honors home hemodialysis advocate
John Cannady will receive the Fresenius Medical Care Renal Therapies Group annual Pioneer in Excellence award February 9th. This award is presented to patients who have a positive impact on the dialysis community and advocate home hemodialysis.
Learn the secret to supporting people with kidney disease
Consumers supporting each other is the big news. Support groups can help people feel less alone and help them learn how and why to take care of themselves. Join our Home Dialysis Central Facebook group!
The kidney community lost a great advocate last month
Nephrology News & Issues Editor Mark Neumann writes his thoughts about the passing of Rich Berkowitz, Founder and President of Home Dialyzors United.
Watch a new home dialysis slide show—and sign up for a meeting!
NxStage has put together a new video slide show on short daily HD, and will be doing 50 meetings around the US to talk about home HD. Maybe one is near you. If you just want to sign up for a meeting, go here: http://ww2.nxstage.com/PT027_NxStageMeetings.html
Were YOU Home for the holidays?
Fresenius noted in December that the holidays—always a stressful time—could be calmer with home dialysis! The "Home for the Holidays" campaign notes that dialyzing in the comfort of your own home, getting to eat and drink more of what you love, and lower blood pressure are all benefits of home treatments. "We believe that every patient who wants to dialyze at home should be given that option," says Keith Lester, VP of Home Therapies.
Working reduces depression, boosts financial security—and is supported by home dialysis
DaVita had a press release picked up by the Wall Street Journal in December on this very important topic and their social media strategy for spreading the word! Find out the scoop about this win-win for people on dialysis and the clinics that take care of them.
You won't believe how this UK clinic makes self-cannulation easier!
Liverpool Hospital has a $20,000 portable ultrasound machine that home HD patients can check out and take home! With ultrasound, it's easier to see a fistula or graft and put in the needles. Imagine doing that in the US!
Where can you find a 5-Diamond patient safety program on Buttonhole cannulation? (We'll tell you!)
ESRD Networks 1 and 5 launched a 5-Diamond safety program for ESRD in 2008, which has been endorsed by the American Nephrology Nurses' Association, the Renal Physician's Association, and the National Renal Administrator's Association. A new module covers use of the Buttonhole (Constant Site Cannulation) technique, and you can find it here.
What does NxStage believe is harming home HD in the US?
In a recent press release picked up by the Wall Street Journal, NxStage announced that it sent comments to CMS to ask for an increase in the home HD training payment. At just $33.44 per session, the current amount does not come close to covering the costs of having a nurse teach a patient and family member.