Act on these Acts!

By Sasha Couch

Those of us living with kidney disease have a barrel full of things to worry about each day. Whether we’re predialysis, on dialysis or post-transplant (like me), balancing a chronic illness, or transplanted but living as a permanently immunosuppressed person, means we worry about taking care of our lives and our families every day in a different way than other people.  So if you ask us to add more to that barrel, many of us are likely to say, “No thanks!  I’m already like The Hulk with this thing on my shoulders!”

But it’s up to us to protect ourselves and other people with kidney disease, and that means making sure legislation protecting kidney patients gets passed. Do you think the average “Joe Government” knows anything about the ins and outs of kidney disease? Ding, ding – I assume you answered with “No!” and you’re right. It’s up to us to let them know what we need.

A Two-Act Play

There are currently two pieces of legislation, S1676/H.R.3912 The Chronic Kidney Disease Improvement in Research and Treatment Act, and H.R. 1224/S511 The Living Donor Protection Act that we must push to get passed in order to improve the lives of kidney disease patients.  Both Acts would provide a leap in proactive kidney care and significant improvements in several areas, most significantly, providing our community with even more hope for the future.

The Chronic Kidney Disease Improvement in Research and Treatment Act

We all know what it’s like to wait forever to see our nephrologists. And sometimes they spend less time with us than it took us to park, then send us on our way! This is partially because most have too many patients since there aren’t enough of them. This can lead to seriously compromised patient care. S1676 would increase the number of nephrologists, as well as access to care in underserved areas. And of course, whether we live in an underserved area or not, we all want those in our KD community to receive services (and this saves all taxpayers as well. Paying less taxes is a universal desire!).

Do you know what Medigap is? If not, you should! Medigap is private insurance that fills in the gaps between your Medicare benefits and what you must pay out-of-pocket. You purchase policies from private insurance companies to help pay for things that Medicare does not pay for. But right now, it’s only available to patients over 65 except in 28 states. But wouldn’t access to Medigap for all ESRD patients be great in all states? S1676 would help push that along.

Ignorance is a kidney superhero’s kryptonite – education is our sword. More kidney disease education means healthier living and S1676 aims to give us increased access to the Medicare Education benefit; we can learn about this disease and keep ourselves well-informed and able to navigate it as effectively as possible. Wouldn’t it be great to avoid getting in touch with our healthcare clinicians about every little thing?

Also, there are times when we need palliative care (Don’t be scared! Palliative care is not hospice care; palliative care is compassionate care that can start as early as diagnosis). S1676 looks to provide coverage for palliative care that could avoid setbacks for many of us through the course of our illness.

How many times have I heard my various clinicians talking about me and my care plan, but I’m not included in the discussion? Umm, hello – over here! This is my life so I should be included in the discussion about how to manage my life-threatening illness. S1676 pushes for more transparency, so we can play a role in conjunction with our healthcare providers to figure out the most effective treatment plan. And would allow us to feel confident that all our information is available to those who should have it: our clinics, doctors and in certain cases (dare I say it!) hospitals.

Bottom line: The Chronic Disease Improvement Act will improv e understanding of and promote access to treatment for those of us living with kidney disease and that gets two thumbs up!

The Living Donor Protection Act

Did you know that back in the 70’s it took 12 hours to do one dialysis session? That’s more than your average dialysis patient does now in a week. It was also expensive, so committees chose who could do it – basically, they chose who lived or died. Crazy, right? Without continual research and innovation, we wouldn’t have the achievements today that have saved so many lives. We need to keep pushing for innovation to always go further. HR1224 will allow for more research and technological advancements. KidneyX is an innovation accelerator which holds contests for the best new innovative ideas in improving kidney disease treatment, their first contest in 2018 discovered cutting-edge ideas for everything from improvements in a wearable renal therapy device (what the what?! Can you imagine when you can walk around with your dialysis machine on?) to a new-and-improved fistula cuff.  This is not Sci Fi – this is science, people. And we need it!

Most people on dialysis and in need of a kidney, want to get a kidney transplant to allow them to live a quality life for as long as possible. But depending on blood type, age or other health factors, many of us don’t make it on the list or must wait on lists that can be up to 8 to 10 years. 10 years?! No one wants to hear that. People can live long healthy lives with one kidney, yet donations from living donors could be much higher. But there are angels who do decide to give to a family member or who choose to give an altruistic donation to a stranger. These people should be treated like Kings and Queens, bows when they enter a room, all-expenses paid trips to Disneyland and front-row concert seats for life. But instead, they often run into financial trouble after giving the gift of life.

Can you believe after donating kidneys living donors are considered to have a preexisting condition? Despite undergoing a bazillion tests to prove they’re in tip top medical shape in order to be a donor in the first place! That means their medical care is at-risk and it can also impact their life insurance status, which puts their family at risk. I know if I were considering donation, this would give me pause.

Did you know time off from work to recover is not covered by the donor’s Medicare or private insurance (though some donors may be eligible for sick leave)?  Bananas, right?  And other expenses during recovery aren’t covered, which can range from childcare to family members taking time off.  And if the donor must travel, he/she pays for the expenses, which may include hotel stays, gas, flights, childcare, etc.  Some places offer free or low-cost hospitality housing but not all.  And what about meals in the hotel, coffee on the road, checked bag fees or new undies for the hospital stay, etc – it adds up!  There can also be follow up expenses that aren’t covered, it’s not like they leave the hospital and everything’s business-as-usual.  They have medical follow up just like the recipients.

There are over 100K people on the kidney transplant wait list. In terms of money, if the “Dollar Store” was renamed the “100,000 Dollar Store,” no one would shop there. That’s a lot of people waiting. We need that number to shrink, asap! Organ donation saves lives and saves money, cutting health care costs by as much as two-thirds and saving Medicare millions of dollars every year. Do we penalize fireman for saving lives? No, they’re heroes, just like donors. Living donors are essential to reducing the wait time for many individuals in need of a life-saving transplant. The Living Donor Protection Act will ensure that Americans who make the life-saving choice to become organ donors won’t face these absurd financial roadblocks because of their decision.  And that also gets two thumbs up!

So stop what you’re doing (unless it’s dialysis, of course) and figure out how you plan to get involved to do you part to protect the kidney community and get these critical pieces of legislation passed. Contact your local representatives and make your voice heard. Tell your friends and family.

Click the text links below to send a message to congress about these two acts today:

The Living Donor Protection Act
The Chronic Kidney Disease Improvement in Research and Treatment Act


Sasha Couch is an East Coast native who has enjoyed her last 19 years in Los Angeles. She has a BA in International Relations from The University of Pennsylvania. Sasha is a kidney transplant recipient. She delights most in her volunteer endeavors, notably working with the literacy nonprofit, Reading Opens Minds.


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