Jamie F. - Racine, Wisconsin

I suffered an acute kidney injury nearly a decade ago and woke up from a three-month long coma on dialysis. With good care, my kidneys recovered function and I was off dialysis after 18 months. At the beginning of 2015, my kidneys stopped working again and I had to go back on dialysis. Luckily for me, once again my kidneys regained their function and I am off dialysis once again. I am one of the lucky ones. Twice I have been on dialysis and twice my kidneys have come back. I’m thankful I could get the all the medical care I needed.

I am a special case in that I don’t have kidney disease so if my kidneys ever stop working again they can come back. But this will only happen when I am allowed to find the insurance plan that fits me best and allows me to pick the doctors I need. Not once has anyone ever tried to steer me to one healthcare plan over another. I am my own best advocate and would only choose the plan that works best with my very unique set of circumstances. When I wasn’t working (while I was on dialysis), I needed help paying for my health insurance because I lost my income. I didn’t want to go onto Medicare where it is hard enough to get a doctor who will see you, let alone one who is an expert with acute kidney injuries. 

If a charity is willing to help pay for my health insurance, I don’t see any reason why I shouldn’t be able to accept their generosity. For me, my health comes first and getting better should be more important than who pays for health insurance bills. 

Reginald M. and Margie B. - Memphis, Tennessee

I was born with kidney disease. I am blessed to have such a strong and supportive mother because she gave me one of her kidneys when I was just two years old. It lasted for 20 years and everything was great. In 2006, my transplanted kidney began to fail so I went back on dialysis. But I was only on for five months. My family came through for me once again and my cousin gave me a kidney. This kidney lasted for 4.5 years and failed at the end of 2010. I have been on dialysis ever since and I am waiting and hoping to get a new kidney.

I got my business degree from the University of Memphis in 2010 but I have not been able to put it to use. I do home hemodialysis and it affects me energy-wise. It’s also not something I’m thankful for but without it, I’d die. I like to drink water and I’m limited to just 32 ounces of liquid a day. 

I want my life to go back to how it was when I had a working kidney. Right now I can’t work because dialysis is too tiring. But I want to find a job. I want to put my degree to use. I don’t want to have help paying for anything, especially healthcare, but having help paying for my healthcare has let me be on the best plan for me. And while I am very tired all the time because of the dialysis, I am not doing that bad. That being said, I don’t want to have to switch my healthcare to something worse. I have always picked my own healthcare, and I don’t want someone else picking my healthcare now. I am very grateful to have charitable help in paying for my healthcare premiums. If I wasn’t allowed to get this necessary help, my overall condition would definitely worsen. I have been lucky enough to get two transplants and I am hopeful I will get a third soon. Having to drop down to Medicare or Medicaid just because I need help paying my bills would definitely put my health and my chances of getting a new kidney in jeopardy. 

Mary F. - Phoenix

I have been on Medicare since August 1 but previously had United Healthcare. They didn’t want to accept the third party payments so they kicked me off and I had to go on Medicare. I had some procedures done before my Medicare kicked in and now I have to pay for those out of pocket. This is all very difficult for me. I take a lot of prescriptions and have to pay $300 a month for them. I am also diabetic and have high blood pressure so I go to doctors quite often. Having to switch plans has been very difficult because I’ve had to go to all new doctors and explain everything all over again to each new doctor and they don’t always get it. And with Medicare they send you to just anywhere. It’s not the doctors I want and used to see.  United Healthcare was the insurance company I picked because it worked best with doctors and stuff. Now that I am on Medicare all the bad stuff I tried to avoid when I chose United are coming true.

Erik M. - Atlanta

I lost my private insurance about three months ago. I’m on Medicaid now but United Healthcare, which I had, gives you more options. It also came with dental care and Medicaid does not. United Healthcare kicked me off their insurance and said that a third party couldn’t pay for me. No one forced or steered me to United, I picked it because it was the best plan for me. It’s just unfortunate they got rid of me because I needed help with their bills.

I’m from Atlanta and I used to travel to nearby places like Savannah and Myrtle Beach but I can’t anymore because Medicaid won’t pay for me to do dialysis anywhere else.

I have four kids. They are 15, 14, 11 and 7. I can’t do the type of things I used to do with my kids, like teach them how to play sports and things like that because I fall a lot because my balance isn’t any good. United Healthcare was going to help me out with it and send me to a neurologist but then they kicked me off my insurance. I have to try and see a Medicaid neurologist but it’s been hard and takes a very long time to even get in to anyone. I’m also still trying to find a primary doctor now. I found one possibility but it is hard to see a doctor who will take Medicaid. You have to wait months to get an appointment. I didn’t have that problem when I was with United Healthcare. I liked them. They were very good to me but then they kicked me off insurance. I’d be better off now with my old insurance because that’s the insurance I chose and everything was working very well with them.

Jason E. - Allen, Texas

To Whom It May Concern,

My name is Jason E., and I have ESRD.  I am a 28 year old male living in Allen, Texas with my brother, sister-in-law and their two children.  Previously, I was a nursing student living independently in Houston, working at a hospital with the expectation of working there post-graduation.  I have lived with type 1 diabetes for 20 years and it finally took my kidneys along with any semblance of independence along with them.  I took leave from work when my kidneys started to fail, then had to stop all together the day before my 27th birthday.  Soon after I lost my apartment and then my car.

I want to share my story pertaining to insurance and third party payers.  I started peritoneal dialysis (PD) the day after Labor Day, 2015.  I was already on a Marketplace insurance after losing my health insurance through my employer, and when it came time for dialysis, at least I had that checked off the list. Aetna had been great up until then.  Paying for all of my doctor’s office visits, diabetes supplies and medications for all of my laundry list of health problems.
I would like to say that I am a fairly educated, experienced consumer of health information and insurance.  Knowing that dialysis would probably mean switching to Medicare, I quickly did my research.  I plugged in all of my medications, researched the Medicare supplement plans from A to N, debated over Medigap versus Medicare Advantage plans and had made some decisions.  Fast forward to my talk with an extremely patient-oriented counselor at DaVita a few months later when open enrollment began for 2016.  The counselor told me about all my insurance options and let me know that the American Kidney Fund might be able to help me with whatever kind of insurance I chose. I was not steered away from Medicare or Medicaid. The counselor also let me know it was up to me to choose the healthcare plan I thought was best for me.
Apparently, only Medigap policy A is available to Texas Medicare patients under the age of 65.  Then I moved on to part D, the medications.  Let’s just say, thousands of dollars for the first few months, known as the “donut hole” then only a mere $450 every month for the rest of the year, what’s referred to as “catastrophic”.
I understand that private insurance companies aren’t in the business to save lives.  They are businesses and businesses are “in the business” of making money.  I am not some naïve soul who thinks that the world is full of nothing but good people and good intentions.  But as these private insurances are in the business of making money, I am in the business of staying alive and doing it while not completely destitute.  If I can maintain a private insurance through the Marketplace for $343 a month while meeting that $6,500 out-of-pocket max for the year, I will certainly do that instead of thousands in medications alone, not to mention the barebones coverage of a supplemental Medicare plan that isn’t covered by the original Medicare 80%.

Through my discussion with my insurance counselor Valerie, she also notified me of a blessing in disguise.  The American Kidney Fund (AKF) would assist with paying my insurance premiums and some of my medications cost while struggling to stay afloat on dialysis.  This caused quite a stir in the beginning of 2016, and is still ruffling some feathers from what I hear.  I was a consumer who dealt with this first hand, scrambling from person to person office to office to ensure I wasn’t dropped from my insurance and left uninsured.  Many weren’t as fortunate as me to have a brother who can shell out $700 for two months of premium payments until the insurance company decided to take third-party payments on behalf of patients directly from the AKF.  Insurance companies are jumping ship left and right, pulling out of the Marketplace due to “consumers being sicker than they expected”.

And I am asked “Why are you not on Medicare? They can assist you, and Medicaid is also available. Have you tried Medicare and Medicaid?” First, as I have explained previously, Medicare doesn’t cover everything that I unfortunately have to deal with in terms of healthcare.  Also, Medicaid has denied me a stunning 4 times.  Every time I apply for a Marketplace insurance or get another form of government assistance, my application is sent to Medicaid and I am denied.  And I have worked in medical offices before.  A large amount of doctor’s offices hate taking Medicare patients because of their low profitability through reimbursements, let’s not even talk about combined Medicare/Medicaid recipients.  Finding a quality doctor with Medicare or Medicare/Medicaid is a difficult task to accomplish.  Not saying they don’t exist, but it is almost a full-time job hunting one down.  Do not get me wrong, if I had no other options, I am thankful Medicare is there to lend assistance.  But I am thankful that I have options and I would like to continue to have those options.

Bonnie C. - San Francisco

I live in San Francisco, have end stage renal disease and have been on home hemodialysis treatments for almost 8 years.

Nobody chooses to have kidney disease. It's a condition that affects all aspects of your life and takes away many other choices - choices about work and travel can be restricted by exhaustion from the disease the time constraints of dialysis and even choices about something as simple as what to have for dinner can be complicated by the strict renal diet. Thirsty and choosing to have a glass of water? Better make sure it fits into the fluid limitations prescribed by your doctor.

One choice I never thought this disease would take away from me is the choice of which insurance carrier to use. I have had private individual health insurance for the past 15 years. When the Affordable Care Act was passed, my insurance company terminated my then-current coverage and assigned me to another policy available on the Exchange. I feel the insurance I currently have gives me the best coverage available. As a patient with kidney disease, dialysis is just one thing I need to have covered. I also have neurological problems, carpal tunnel syndrome, heart issues, difficulty breathing in addition to all the usual things we all visit the doctor for every year. My current insurance policy is my choice, not one I was steered into by my dialysis clinic. They have never even spoken to me about my insurance coverage, other than to confirm I had it.

For the past 7 years, I've been grateful to have my insurance premiums paid by the American Kidney Fund. As my ability to work full-time was curtailed by kidney disease, their financial assistance has been a safety net that assures I will get the medical care I need, when I need it. I’m thankful for the Affordable Care Act, which ensures that people like me (who were virtually uninsurable due to pre-existing conditions) can get the health care we need.  But I know that insurance companies are still working against us, and want to force us onto taxpayer-funded health care even if it’s not the best choice for us.

As you consider this issue, I strongly urge you to consider the patients and what is best for us, and not be swayed by unfounded rumors from the insurance industry.