Why Wait? Advocate!

By Sasha Couch

Somehow, we all made it through 2021! We’re three months into 2022, it’s World Kidney Month, and we should celebrate!! This was not an easy couple of years by any measure, especially for those of us who are immunocompromised/immunosuppressed.

Since the onset of COVID, we have all focused much of our time and energy wondering what was safe to do or not do, and how to stay protected without wrapping ourselves in saran wrap every time we left our homes (though I did think about doing that sometimes!). Despite everyone focusing their attention on their well-being and that of their family and friends by necessity, there was a lot going on behind the scenes that impacts our lives as people living with chronic kidney disease (CKD).

There has been a fair amount of notable kidney legislation introduced, some passed, during the last few years (woo hoo!). And CKD legislation remains on the docket. Which is why we should put advocacy on our radar. The real point of advocacy and why I’m hooked, is the power of using your voice to help yourself and others. We can only do what’s within our comfort level and capability; however, we must remember that we have more power than we realize!

Why Advocacy is important to me. As someone who has been invested in advocacy since I was first diagnosed with CKD, I think it’s critical to be aware of the decisions being made by others that impact my life. It’s like going to the grocery store, having someone else squeeze the melons and pick out the perfect one for me. When all I can do is just stand by and think, “Not that one!” and hope they pick out the best one for my fruit salad. I want to lead by example and support other people with CKD who realize we all can make a real difference.

I stopped counting the number of times I’ve had to explain how CKD works. Or even more simply, how kidneys work! How many times have you had to explain to friends and family how CKD works? A renal diet? Dialysis? Transplant? Where the kidneys are located in the body?! I’m sure most people reading this are saying “Many times!”

Our legislators, the people making choices about laws and economic decisions that impact our lives, are rarely educated about CKD. How crazy is it to think someone making decisions for you doesn’t know the ins and outs of what they’re making decisions about? The way to fix this is to educate them. We must tell them what it means to live with CKD, what is important to us, and what will help us lead the lives we deserve like anyone else. Our legislators work for us, and we should be eager to tell them what we’re thinking. And that’s called Advocacy. RSN has created many conversational tools to help inform people about CKD National Kidney Month – Renal Support Network (rsnhope.org) .

Is that the only form? Advocacy is not limited to one definition. I like to think of myself as an “advocate of many hats.” Advocacy is boosting the interests or cause of someone or a group of people. An advocate is a person who supports, advances and fights for a cause or policy. Advocacy is also about helping people find their voice. Here are just a few interpretations that I’ve found in my experience:

  • advocate for yourself or your personal cause
  • advocate to raise awareness for a cause that impacts a group, with or without being a part of the group
  • advocate for a cause or group to directly improve the lives of that group through structural change or laws/legislation

How does it apply to CKD? As for CKD, for some of us advocacy may mean simply sharing your experience with the world. Being an advocate may be as simple as sharing open and honest dialogue about the struggles we face as people living with CKD. I appreciate when people ask me questions, or I can tell a story that may sound nuts to them but is just a part of my daily life. For instance, how I navigated the days when I could only consume 32 oz of liquid a day (the shocked faces as size acknowledgement sinks in is priceless!).

Hearing our stories leads to more widespread knowledge, which leads to more understanding, which can also lead to people being supportive of organizations or concerns in our community with time and/or funds. Most importantly, it can lead to essential information about CKD being spread throughout the general population.

As an under-acknowledged public health crisis, with 37 million people in the US alone with a form of CKD (or 1 in 7 people), disseminating knowledge helps us all. How many people have said to you, “My Uncle Earl was on dialysis” or “My sister’s boss’s ex-wife had a transplant”? Not enough fingers to count in my case! And often people are flummoxed about how they can help, even in our CKD community. Maybe sharing your story will encourage someone, or their family member, or caregiver, to do the same or more.

With CKD being more understood in the general population, the likelihood is more people who may have CKD in the family will think about being tested or looking for symptoms earlier. This impacts everyone! Beyond people possibly saving their own lives and lives of friends and family, we are all affected by the massive financial cost and loss of productivity associated with kidney failure. While individuals with CKD can be a huge expense to the healthcare system, those with end-stage renal disease (ESRD) cost exponentially more – so it benefits all of us to do what it takes to keep CKD from progressing; and part and parcel of that is getting people living with CKD the assistance and funding needed.

What if you want to do more? For those who want to be advocates fighting for better lives and care for those of us living with CKD, it’s more of a legislative advocate approach. Our advocacy can be a critical component in achieving the change we want to see. We can work to improve the laws, policies and systems that affect the communities we serve, and we are often the most powerful resource for change.

It is necessary and empowering for patients to get involved in decisions that impact them, their families and others living with CKD. Our involvement also has a direct impact on the future of CKD and how much attention it gets in the governmental, healthcare, insurance, and public arenas. Of course, we want as much as possible – one time it’s ok to be a flagrant attention seeker! People living with CKD know the challenges and successes of living with CKD better than anyone. Your local, state, and national representatives are accountable to YOU!  Most will make time to listen to our thoughts, concerns, and solutions. Many of you may know that Lori Hartwell, fearless leader of RSN, is very close to many of her elected representatives and makes sure they hear what the CKD community wants.

It takes a Village. We can’t carry the albatross on our own – our necks will be killing us! (No thankfully, I do not do Stand Up comedy). An integrated approach is needed to raise awareness about CKD amongst everyone in the US to help promote CKD prevention, early detection, and research. Improving education and awareness about CKD, which leads to a bigger push for legislation, also requires physicians, other health care professionals and industry allies. We need to remind them of their role and why their voice is needed. Many of them work in kidney care but don’t live with it like we do, so an occasional poke and prod is a good thing! As CKD increases in all communities there must also be consideration of different levels of health literacy and cultural backgrounds to avoid unintentionally contributing to health inequities. I’m always communicating with my nephrologist, renal nurses, social workers, dietitians, etc. about kidney legislation – sometimes to the point of “Oh no, here she comes!”

RSN and Advocacy

RSN has always made it a point to remind people that an important thing we can all do is educate ourselves on issues and legislation affecting the kidney community. Looking out for new bills and laws keeps us abreast of changes that may directly, or indirectly, impact our lives. RSN realizes the more we know, the more we can fight for laws that will make our lives better and push back against those that won’t.

There are four main pieces of legislation that RSN has been watching for a while. Sadly, most of them haven’t moved too much, but if you go to RSN’s Advocacy page you can find out ways to get involved to help push them along. Congress can move at a slooow place. It’s up to us to keep reminding them about our issues. Like a boss “encouraging” an employee, we can give them friendly nudges that these bills will improve the lives of thousands of people. Does anyone remember the School House Rock educational videos of the 70s? The one where the slumped over, downcast bill sings, “I’m just a bill, yes I’m only a bill, and I‘m sitting here on Capitol Hill”? Mr. Bill reminds us that it’s always a waiting game and that patience is indeed a virtue.

The Legislation

  • H.R. 5534 Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2020 – PASSED and takes effect in 2023. Learn more.   

 This is the bill that people living with CKD like you and I helped bring into law (Yes!!!). RSN’s Advocacy Portal can assist you in contacting your representatives or by using the tips learned from RSN Advocate CKD | Renal Support Network (rsnhope.org) . I’ve formed a nice relationship with the people in the office of one of my Reps and it makes me feel like I’m contributing when I believe they are listening to the community. RSN’s tool allows you to type in your zip code and it will inform you who your state and federal representatives are. You can try to develop a dialogue with your legislators Legislator Lookup – Renal Support Network (rsnhope.org)  In addition, there’s also a social media toolkit on the website to guide your online advocacy efforts: Advocacy Social Media Tool Kit – Renal Support Network (rsnhope.org).  Here are the other three bills to watch:

Those are some of my observations, take ‘em or leave ‘em, but I will continue to fight for us. Kidney Month is a great month to start, and it will be followed by National Donate Life Month. So don’t hesitate – participate, advocate and let’s tell them why we’re not second-rate. We can all make a difference!

 

Sasha Couch is an East Coast native living in Los Angeles for over 20 years. She has a BA in International Relations from The University of Pennsylvania and works as a technical writer. Sasha received a kidney and pancreas transplant in 2017. She delights most in her volunteer endeavors, notably working with organizations helping the homeless like the Culver-Palms Burrito Project.

More from Sasha Couch

H.R.5534 – the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients…

Navigating Insurance & Medications

Voting Is Your Voice

My Mane Event

My Kidney & Pancreas Transplant Journey

Proposition 8 is Defeated!

Vote No on Prop 8 – A Wolf In Sheep’s Clothing

Celebrating Our Independence

Note to Self – 1st Place Winner, 14th Annual Essay Contest

My Pal Hope – Honorable Mention, 13th Annual Essay Contest

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