ESRD, The Bottom Line

For the second day in a row I have sat at my computer trying to think up search words that would deliver information about the financial effects ESRD has on its patients and families.  For the second day in
a row I have been unsuccessful at finding any information online about foreclosure rates, job loss or loss of other income and and loss of credit as a result of ESRD.

All of us who are in this struggle understand how much an ESRD diagnosis can devastate a person financially.  Even with Medicare and private insurance, medical expenses can pile up.  Many times families have to choose between paying a medical bill and paying a utility bill.  Medical debt is leaving Americans in dire financial straits like never before.  The number one cause of bankruptcy in our country is medical bills.  So where does that leave all of us who, although we have been good financial stewards all our lives, find ourselves faced with a life-threatening financial obstacle like ESRD?

If you look online to find statistics of or resources for people who have lost their homes, jobs, savings and credit scores you won't find many. Do a Google search of ESRD paired with the words "financial" "economic" or "foreclosure" and you'll get results for ESRD's cost to Medicare, a couple of posts to message boards from ESRD people who are facing foreclosure, articles about economic incentives for healthcare providers and the economic benefits of preventing ESRD.  The system is failing somehow, to notice the financial difficulties that families face as a result of ESRD.

There has to be a starting place where we can all have a voice to raise awareness not only of the physical, mental and emotional effects of this disease on our lives and the lives of our loved-ones, but of the financial devastation it can cause as well.

Many people with ESRD are unable to work or can no longer do the type of work they used to do. Many are unable to continue working full-time. Those who qualify for Social Security Disability tend to exist on a fraction of the income they had when they were able to maintain full-time employment.  There are others, like me, who are receiving SSDI and working part-time as an independant contractor to supplement that income. As able-bodied as I feel these days, finding an employer who will risk hiring someone with such a chronic illness has been pretty much a futile endeavor.

Before I started dialysis last year I had full-time gainful employment with health insurance.  My employer did not know that I had ESRD.  I never felt the need to share that information with them, and had already gone through one experience at another job where I was let-go after they found out I was planning to get a transplant using my company's insurance.  Once I found out that I had a date for surgery to place the PD catheter, I felt I had no choice but to be up-front with my boss about it.  I worked on the day of my surgery which was on a Friday.  I was back at work by the following Tuesday.  I worked through pain and discomfort for weeks, added to the extreme fatigue from the disease itself before starting dialysis, it was quite a battle for me to keep moving forward.  A month later, I was again let-go. My employment record had been spotless.  I had never received any type of warning or write up, but suddenly my job performance was brought into question and I was deemed incompetent for the job.  Not having SSDI in place, I was left to file for Unemployment Compensation. I had to live on about 40% of my regular income for 6 months.  In that time period I applied for hundreds of jobs.  I applied for jobs for which I was overqualified.  I went on interviews and had phone interviews that went splendidly until I shared why I was unemployed.  I could see the disconnect in the eyes of the interviewer when I said the word "dialysis".  I know it's illegal to discriminate against someone because of a disability, but there's no way to prove discrimination in these cases.  Potential employers are never going to admit that they neglected to offer you a job because of your illness. They will always give another, more legitimate sounding reason.

The unemployment checks ran out just before Christmas.  Thank goodness I had found some part-time contract work by then because it was the only thing that got us through the month.  Then in January I started receiving SSDI.  SSDI pays less than unemployment, even with the amount my son gets added in, so my part time work has been a life saver. Still, my mortgage is way past due and is in the final days of foreclosure right now.

It doesn't help that renal osteodystrophy has left my bones weak.  A month ago I had a run in with my dogs that left me with a broken leg. So on top of the challenge of finding employment and a new home, I have a pair of crutches and a wheelchair with which to contend until September when I'm allowed to try to walk again.

I know I can't be the only ESRD patient who is facing these kinds of obstacles, but when I reach out for any kind of support, nothing is there.  Where are all the other people with this disease who are losing their homes and struggling to keep their lives together because of financial set-backs?  Where are the programs that help people like us stay on our feet, aside from just covering the cost of our medical care and insurance premiums?  I'm not discounting the organizations that pay COBRA or Medicare premiums for patients.  Without those programs many of us would never afford treatment.  But let's face it, there's more to life than just staying alive.

We need to be able to provide for ourselves and our families.  We got unlucky enough to get ESRD, but our responsibilities didn't disappear the day we started dialysis.  There are people still depending on many of us. We shouldn't have to give up everything we have just to keep existing.

Where do we start?  If we are ever going to see change we will have to step up and create it.  The first step is to talk about these issues more openly and to share our financial woes and worries with people who understand. An open dialogue about these issues will bring them out into the light of day, exposing another facet of how this disease profoundly changes the lives of those who have it.  With one out of every 10 Americans having chronic kidney disease (CKD) or End Stage Renal Disease, it is time for our country to take notice.  We need the same awareness, support and advocacy that other life-threatening and life-altering diseases get and that activism, education and advocacy will have to start with those of us who have ESRD and the people who love us.

I encourage you to use this blog as a forum for discussing the financial impact ESRD has had on you and your family.  Perhaps by sharing our stories we will be able to also find resources out there that can help meet our needs.

There's a comment link below, use it to share your story or to add your thoughts about this issue.