My Healthcare Story: An Open Letter to Politicians on What It is Like to Be Disabled in America
I am one of of the many people in America who is suffering from the broken healthcare system we have in our country right now. Every single day of my life I have to fight against my multiple chronic illnesses. It is a daily struggle that sometimes I win, and many times I lose. I fight these battles every single day, and I fight them with no support from the people in government who are supposed to be there for me. The government has turned a blind eye to the many, many New Yorkers, and even more Americans outside NY, like me, who are in dire straits due to mounting health care costs and coverage gaps that we are saddled with. My family and I are in trouble, and our government officials, who have been elected to speak for me, and guide our state, and country to a better way, are failing me and those like me. We need help, and we need it now. We don’t have the luxury to wait and see what plans might come down the road. We need serious health care reform, and we need it now, otherwise people will lose their homes, their families, their lives.
In January of 2014 I went to my family doctor, after having been sick for days. I wasn’t able to breathe, my chest ached and I felt so sick — I thought I had the flu. I was given different medications and told to rest. A week later I was back in my doctor’s office, having gotten worse. Again I was given more medication and told to rest. I couldn’t breathe, I couldn’t get out of bed, I was so sick my husband wanted to take me to the hospital then and there. But, we didn’t go — it would cost just too much money, and after all — it is just the flu, being compounded by my asthma. So instead, I went back to my doctor’s office, from where I was told by the doctor that there was no other choice — I had to go to the hospital — my lungs weren’t working, I wasn’t getting enough oxygen, so I was taken immediately by ambulance from the doctor’s office to the hospital.
I didn’t leave that hospital for weeks. I was put on a breathing machine, while they ran test after test to find out why I wasn’t able to breathe, or stand, or even sit up. It clearly wasn’t just my asthma aggravated by a virus. My husband was at a loss, my young daughter — only 5 at the time — was so confused as to where Mommy had gone and why she couldn’t see me. Eventually I was well enough to leave and go home — still not knowing what had caused this. I was able to be back with my husband and my daughter. But, I still wasn’t well enough to walk on my own, shower on my own, feed myself, or even get out of bed by myself. As a small family in a small apartment with already mounting medical costs, my husband couldn’t stay home from work to care for me. We had no money for a home health aid, and our insurance wouldn’t cover one. So, what this meant was that my husband would make a lunch for me in the morning and put it in a lunch bag and leave it on the bed for me to eat while he was at work. So, I was left at home, alone, not able to even walk on my own, with a cooler bag containing some food and drink and a commode next to the bed. This was the best my family could do, all we could do. It took months of living like this before I was well enough to leave my house and go back to work.
Ever since then, I have been sick, I have never fully recovered. I saw doctor after doctor since 2014, trying to determine what was wrong with me — why am I still ill? Asthma specialists, pulmonologists, orthopedists, rheumatologists, neurologists, hematologists, etc., a never ending parade of specialists. Eventually, over the last three years of waiting and searching and being ill, it was determined that I have a variety of chronic illnesses — all of which stem from a double whammy of progressive auto-immune diseases. l was in a desperate search of finding the right specialist — if there even was one — that could help me. Finally, I received the answers I had been searching for for FIVE YEARS of pain and frustration. I have Psoriatic Arthritis, Fibromyalgia, Chronic Pain Disorder, PTSD, Bi-Polar Disorder, Anxiety and Asthma — all of which have no cure. There is nothing for me but a lifetime of fighting these illnesses — two of which are progressive. Since they are progressive I have to receive very consistent regular treatment so that I can slow the progression, otherwise it will get worse than it already is. I am a fighter, but I need comprehensive medical coverage so I can effectively fight these diseases! And, for every one of those doctors, hospitals, and medications I needed, there was — and still is — a cost. A big fat bill — associated with each and every one of them.
You see, I have health insurance — “good” health insurance (if any of the health insurance companies we have can be called that) — United Healthcare Oxford. My daughter and I have this health insurance through my husband’s job. Our insurance has a $2500 deductible — per person, per year. Our insurance costs us $368 per month. In addition, I have to pay over $250 per month in copays to see my doctors. I take sixteen different medications. Sixteen. Each one has a prescription co-pay, and in all, it costs more than $600 per month just to pay for these medications. This means over $1200 per month immediately goes to life-saving healthcare costs, assuming I don’t need any special treatments that month (which I often do), and excluding the $2500 deductible.
Obviously, the crushing costs of all of this is not something we have been able to maintain — we are drowning from these costs. I have thousands of dollars in debt from medical bills. They go all the way back to the hospital bills from 2014. But this debt isn’t just mine — it hangs over my entire family’s heads. There are times I have to go without the medical treatment I need, just so we can pay the bills — just to keep the lights and heat on. There are times I have to choose between getting my daughter the basic things she needs, or paying the rent, over the medical care that I need.
My family lives in an apartment, above a store, in Babylon. My husband has a good job. I used to work too until June 2017, and the one and only reason I had been able to keep my job for so long while being so sick is FMLA. I worked for as long as I was able to, because now that I am enrolling in disability — which my doctors tell me I should have done a long time ago, and have hurt myself by not doing until now- we will not be able to afford our apartment, or pay our bills. My disability payment would cover less than one paycheck per month that I was receiving while working. That is not enough to cover even the medical costs we have every month.
Every minute that I am home I am lying in my bed sleeping, or resting. I am not able to cook, clean, take care of my family, play with my child — none of the things most people take for granted. I cannot even take a shower without becoming tired and in pain. By the time I am done washing my hair my arms feel like they are going to fall off from the exhaustion. This is my life now.
All of this because I am unlucky enough to become a sick person in the lower middle class, in NY, in America. People like me are stuck. We used to make too much money to qualify for Medicare or financial assistance, and yet not enough to be able to pay the medical bills and all our other bills without going bankrupt, or going without medical treatments and care we need, just to be able to provide for our family. Now that I am unable to work at all I have filed for disability. I was denied in my initial application. I then had to file an appeal. I have now been waiting over 18 months just for the date of a hearing — not even the hearing itself. We are down half of what our family was making. My husband alone is trying to keep this family afloat by working three different jobs. How in the world does the government expect a person who has become disabled to live while their disability application is processed? How are we supposed to pay the rent, the bills, buy food, afford medical treatments? We can’t. This slowly sinking ship has become the Titanic.
I am 33 years old, with no savings. We own nothing and have nothing to show for all the hard work my 37 year old husband and I have put in over the years. Both of us have worked since we were teenagers — and we have nothing to show for it. With the way things are now in our state and country — I don’t see how we ever will.
I ask how in this great progressive state and nation, why is this a reality for my family, and so many others? How is this allowed to be ignored by so many? How is this the America that we have, when we know that this is not the America we want and have believed in? My family, and so many others, need your help — right now.
You can help us by supporting the NY Health Act ( A5248/S3577) — a bill here in NY, and supporting a national single-payer, universal health bill federally, such as H.R. 676, the Expanded and Improved Medicare for All Act. These types of bills will save people’s lives. These bills can alleviate the pain and shame associated with being chronically ill, by stopping the accumulation of crushing debt that comes with being sick. These bills can help people get the medical care they need, without having to choose between providing for their family or going to the doctor. These bills will help people who are afraid to go to the hospital when they are ill, because the cost is just too high — and that is when terrible things happen, as I know all too well. You all have the power to do something about this. So, I beg of you, stand up for me. Stand up for all of us that cannot stand on our own. Stand up and stop this — support the NY Health Act, the federal Improved Medicare for All Act — and please, I beg of you, do it now, before it is too late!