When I was about 12 the Rubik's Cube was the most popular toy. It was so much fun to take a new, colorful and perfectly arranged cube of color and jumble it all up, then try to put all the colors back into place again. My generation came up will all kinds of ways to work around the puzzle solving aspect of the Rubik's Cube (today they'd call our cheating ways "hacks"). I had one friend who took all the colored stickers off and put them back on again so the colors all matched up. Another pal of mine learned how to completely disassemble the cube and snap it back together. We all tried to share tips and tricks and when all else failed you might find one of us off in a quiet corner employing one of those "hacks."
Having a serious illness has really caused a Rubik's Cube effect in my life, and sadly, I don't think there are any hacks out there to fix things. I often think back on who I used to be before I got sick and wonder what happened to that person. I was put together, organized. I had my life all figured out. I had a good job. I had insurance. I had a roof over my head and a reliable car to drive. I had friends who treated me like a regular person--friends who never probed my face with concerned eyes to look for signs that I'm not doing okay, despite the fact that I'm saying I am. Employers valued me, they didn't look for a reason to fire me because they were afraid I would make their insurance premiums skyrocket. Insurance companies were happy to pay out when I went to the doctor because it was such a rare occurrence.
At this point in my life I have lost 2 jobs due to my illness. One, I am not allowed to talk about publicly for legal reasons. The other was my most recent job, and is the employer with which I am still dealing concerning my COBRA policy.
It is disheartening enough to lose a job working for a non-profit hospice organization because you are seriously ill, but it really boggles the mind when you realize just how determined that organization is to get you and keep you off their books. I realized soon after I was fired from the last hospice job, that the reason for my departure was directly related to the the medical costs I was about to incur using my company insurance policy. At the time I was fired, I had no idea that I would be able to take advantage of the company's group insurance through a COBRA plan. Indeed, I wouldn't have been able to do that, if not for the help of the National Kidney Fund who has been paying the $700.00 per month premiums on my behalf.
Everything has gone surprisingly well up until about a month ago when I was notified that my COBRA plan had been terminated for non-payment of the premium.
Here's how this works, COBRA sends me payment coupons for 4 months at a time. I take those coupons to my social worker at the dialysis clinic. The social worker sends the coupons monthly to the NKF, who then pays the premium, keeping my insurance policy active.
Here's where it all went wrong: The payment coupon for July should have been sent to the NKF in June; however, my social worker, in error believed she didn't have the coupon for July. Therefore the coupon wasn't sent and payment wasn't made. July would have been the last coupon in the set of coupons they last sent me. In early August (maybe the 10th or so) I got a new set of coupons from COBRA and promptly took them to my social worker. It was then that she discovered her mistake, but by then it was too late. My policy had already been cancelled and by law, my former employer is under no obligation to reinstate it. The law says that if a COBRA policy premium is more than 30 days late the employer can cancel the policy and they do not have to reinstate it.
According to the insurance specialist with my dialysis company, most companies would go ahead and accept payment of the missed premiums (especially since it was no fault of my own that the premiums weren't paid). I knew though, that the particular company who held my fate in its hands would not decide in my favor, and in fact they didn't.
Yesterday I got a call from the insurance specialist telling me that she had spoken with the HR director of my former company and was informed that they would not reinstate my policy even though the NKF was standing by with the funds to bring the premium up to date.
Then when I got home I had a letter of claim denial from United Healthcare in the amount of $25,000 for my dialysis for the month of August. Also, any claims that were made in July are denied. I had my first transplant evaluation at MUSC in July, totaling about 15K. Also, I had a couple of ER trips, two gynecologist appointments, x-rays and two ultrasounds in July/August that will not be covered. In short, I have accumulated over $50,000 of medical debt in 2 months.
Medicare will pay 80% on the kidney failure related costs. The ER bills, gynecologist bills, x-rays and ultrasounds are 100% my responsibility. That leaves me with about 12 to 15,000 in medical expenses for just the last 2 months. Dialysis is 25k per month. That means that every month I am going to be stuck with at least $ 5,000 that I'm responsible for. That amount doesn't include medications, for which I now have no coverage.
The really depressing part of all of this though, is that it will ultimately affect my ability to receive a transplant. One of the important factors in deciding who can have a transplant is figuring out whether a patient can afford to pay for the anti-rejection medications post-transplant. Also, with transplants costing upwards of $75,000, the travel expenses to and from MUSC, the time lost from work etc...well, it makes a transplant seem a whole lot like a pipe dream for me.
As far as I know, I have no recourse in this matter. There is nothing I can do except find a Medicare part D plan to cover my medications. Even with a Medicare supplemental plan, I am still responsible for the 50-plus grand that I owe for the last 2 months. I don't make a whole lot of money. I already pay a Medicare premium, and once I add on part D and a supplemental plan, who knows how much of my tiny income will get swallowed up in premiums every month? How much can a person pour into medical costs and still be able to provide for a child and keep the basics in life? Even with my part-time job and disability, I didn't make enough to keep my home. I am now living with a friend who has graciously offered me the opportunity to share expenses so I will have an affordable place for my son and I to live.
Just as two employers have demonstrated already, companies aren't fond of seriously ill employees. We have to take too much time off. We have weak immune systems and catch colds and stomach bugs easily. We have to come in late or leave early for doctor appointments. We cause group health premiums to go up considerably for the rest of the company's employees. Business wise, we are just not a good investment. I have had many great interviews that went south as soon as I had to reveal my illness to explain the gaps in my employment. Also, I have to tell them about my health challenges for safety reasons, and because I may at some point need special accommodations.
The world just isn't a fair place when it comes to those of us dealing with disabilities and illnesses. We are often treated as less-than-valuable in our society, especially in the corporate world where the bottom line has nothing to do with being ethically sound or even decent towards employees. In my case, even a non-profit organization that exists solely for the purpose of helping the seriously ill abandoned me because of my illness. And in this case, there is no justice to be had.
I wish life were still as simple as those lazy summer days when I was twelve years old, hiding in the corner of my room, rearranging the stickers on my Rubik's Cube. But some puzzles have no solutions, even if you do try to find a way to work around the obstacles. This is one of those conundrums.
I hope none of you ever have to be in these shoes.
