The Power of the Patient Voice

This blog post was made by Nieltje Gedney on July 16, 2020.
The Power of the Patient Voice

Years ago, when I first developed symptoms of a chronic illness, I was a passive observer in my care. This was in total contradiction to all that I had believed in and fought for my entire life. From the age of 16, I lived on my soapbox—advocating to right the wrongs in this world. From lowering the voting age to 18 during the Vietnam war to child abuse and domestic violence issues in the 90’s, I learned very early in life that a united voice held the power of transformation.

However, when it came to my own care, I felt I had no voice…until I began my dialysis journey. Thanks to the dedication of many advocates who went before me, there were several organizations already in place that provided information and support, namely the Medical Education Institute (MEI), which runs Home Dialysis Central (HDC) and Home Dialyzors United (HDU). Together, the Facebook groups for these two organizations are more than 7000 members strong. That is more than half the total number of dialyzors using NxStage for home dialysis! That is a powerful voice! And, I became one of them.

Once again, I found myself on my soapbox, advocating not only for the benefits of home dialysis, but also better dialysis for all. Through the advocacy efforts of HDU, and the support of everyone at MEI, we have been making a difference. However, it is all thanks to YOU. It is YOUR voice, your participation, your efforts, that have made our initiatives successful over the years.

Each July, CMS prepares a Medicare End-Stage Renal Disease (ESRD) Prospective Payment System (PPS) Proposed Rule. A 60-day comment period follows, and each year HDU provides a link for patients to comment. (Expect to see that next month). We encourage our members to tell CMS what they want/need/think. By law, CMS has to read EVERY comment. This is one opportunity for your voice to be heard. Over the years, CMS has listened.

Here is, in small part, some of what you have helped HDU accomplish, with your comments and your voice:

  • For years, home hemodialysis was virtually ignored as a treatment option, in part because of the cost of training home patients. In 2016, HDU began a campaign to increase home training dollars, and asked members commenting on the 2017 Proposed Rule to ask for this. In 2018, training dollars for home dialysis were nearly doubled from approximately $50 per hour to almost $100 in the Final Rule.

  • HDU recognized that the requirement for a care partner was a huge barrier for many people wanting to do home dialysis—including myself. In 2016, we initiated talks with the FDA and NxStage to remove that requirement. In August of 2017, the FDA announced that NxStage was approved for solo dialysis.

  • In 2016 I wrote a 5 page letter in response to the Proposed Rule for that year. CMS not only read it, they invited me to speak at their CMS Quality Conference in 2017. If you think that CMS does not read your individual comments, I can assure you they do. Your voice matters! Stand up and be counted.

  • In late 2017, there were rumors that the Medicare Administrative Contractors were trying to, very subtly, eliminate payment for more than 3 dialysis treatments per week. They held the required hearings, but often released incorrect information for participants, and everyone who tried to sign up to speak was turned away! NxStage, HDU, MEI, and other stakeholders refused to accept this, and mounted a campaign to educate CMS about the dangers of this reckless policy. We prepared a patient video talking about the benefits of more frequent home dialysis and sent it to CMS. While there was never any formal announcement, clinics are still being reimbursed for more frequent dialysis that is justified as a medical necessity by the treating nephrologist.

  • As more home dialyzors began travelling with their NxStage machines, HDU’s founder, Rich Berkowitz, realized that the airlines needed guidance for handling air travel with dialysis equipment. HDU met with the U.S. Department of Transportation (DOT) to ask that dialysis machines be accepted by airlines at no charge. In 2013, the regulation appeared in the Federal Register as law, and was updated, again at the request of HDU, in 2020. Today, thousands of dialyzors travel because of the vision of HDU’s founder and support of its members. Thanks to the enactment of 14 CFR Part 382,i, you now have rights when you need an “Assistive Device”—including a portable dialysis machine—when you travel.

  • Some patient groups (NKF, AAKP, and AKF) conduct advocacy days annually, inviting patients to meet with their Congressional representatives about kidney disease. HDU members participate in some or all of these days, as often as possible. In 2018, The CHRONIC Care Act was passed, in part due to these collective efforts.One provision of this Act was to give patients the option of attending 2 out of every 3 clinic visits via telehealth, a key win for adopting home dialysis as a treatment option.

  • In 2019, several stakeholders approached HDU regarding a payment model for new devices. The 2019 proposed rule created a payment model for devices: the transitional add-on payment adjustment for new and innovative equipment and supplies (TPNIES). However, in the initial Rule, new dialysis machines were excluded. In April, 2020, HDU initiated a petition to CMS requesting that new dialysis machines, such as the Tablo, Diality, and Quanta, be added to the TEPNIES. We sent 700+ comments and signatures, and are excited to see that the new 2021 Proposed Rule includes a payment model that nowincludes new dialysis machines entering the market. A huge THANK YOU to all 700 of you that signed the petition and commented. Once again, your voices were heard!

  • Perhaps the single greatest achievement in HDU’s advocacy efforts culminated in the signing of the Advancing American Kidney Health (AAKH) Presidential Order on July 10, 2019. HDU, along with other patient groups and stakeholders, had been meeting with CMS and HHS for more than 10 years about the benefits of home dialysis. At times, it felt like we were making little or no progress, but your stories provided HDU with the incentive to keep advocating. We never gave up, and talked about home dialysis at every opportunity. In 2019, we were rewarded with a Presidential Order making kidney health a national priority!

  • Finally, when COVID-19 hit this year, paralyzing the nation, HHS immediately convened a Working Group of all the major stakeholders in the renal community. The purpose was to immediately enact waivers to protect patients and encourage the use of home dialysis during the pandemic. HDU was invited to the table and contributed to the discussion, As a result and—at our suggestion—HHS created a separate roundtable specifically for home dialysis. The waivers that resulted eliminated all face-to-face clinic visit requirements for home patients until further notice. When clinics were slow to acknowledge this Waiver, HDU began an information campaign with other grassroots organizations and the ESRD networks to make sure patients and clinicians understood.

HDU may have spearheaded these advocacy efforts over the years, but could not have achieved any of these goals without the collaboration and support from HDC Facebook group members and MEI staff. None of this would have been possible without the cooperative effort of ALL our members. HDU and HDC provided the vehicles, but your voices powered the movement. This truly has been a team effort!

As we left the AAKH signing ceremony last July, in one collective breath, each of us in attendance thought “Our work has just begun.” Now, with the COVID-19 pandemic upon us, home dialysis has become even more critical to increasing the survival rate of dialyzors. We need your support and voice more than ever. Take pride in what you have achieved so far—and understand that we have much farther to go. Together, we can improve the quality of life for dialyzors and change the face of dialysis for the future. Can we count on you?


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