By Rich Berkowitz
Happy New Year! I hope 2013 is off to a great start for everyone. No, I’m not Moses. My beard is nowhere near that long and I don’t wear long robes, nor do I talk to a Burnishing Bush or climb mountain tops. But I have been doing home hemodialysis for seven years and am a living example it allows one to continue living a quality life without native kidneys.
For me, each new year presents an opportunity to reflect on the last – on the opportunities I have had, even the opportunities I’ve lost. There were additional obstacles I have overcome, and some I’ve tripped over. It was one more year I lived a good quality of life with kidney failure. One more year many others on dialysis did not. I’m one of the lucky ones. I’m able to do the therapy that affords me the opportunity to live the life I want — family, involvement with community, travel and more.
As home dialyzors, I imagine it is the same for most of you as well. Most of us had to overcome real barriers in order to get where we are today – doing our own research to learn about HHD, pushing our physicians and clinics to let us do HHD, and more.
There are people like us all across the country – who are still struggling to get access to HHD and far too many that have never even been told about HHD as an option.For example, a patient in Montana who was interested in finding out more about HHD after meeting a patient who was doing well on the therapy recently called after being told their unit did not offer HHD to Medicare patients. Fortunately, this patient was able to find a different unit that would provide information on HHD – but this is just one of many examples of patients and families who reach out because they are at the end of their rope.)
It’s not just dialyzors who are frustrated either – physicians and dialysis nurses are frustrated because they have patients that would clearly benefit from HHD, but their clinics either are not certified to offer HHD or they are told their units do not offer HHD to Medicare patients.
You all know just as well as I do that this, unfortunately, is the reality for too many patients – it’s time to raise our voices so that more patients have access to HHD treatment.
The best way to make a difference is for dialyzors like us to speak out about our experiences and our wish for other patients to have the same opportunities – with this in mind, I encourage you to tell your story here…how long were you on dialysis before you learned about home hemo?… did your unit tell you about home hemo, or did you learn about it some other way?… when you asked for home hemo, how long did you have to wait (or how long have you been waiting) before you were scheduled to train?… did you have to change clinics to get HHD?…did you have to change physicians?
When you share your story, talk openly and honestly about where you have seen delays or barriers to access. And, stay tuned here for other ways to reach out to Medicare to ask them to change their policies and allow better access to home hemo.