Legislators: Oppose Measure that Will Harm Dialysis Patients
June 24, 2018
Antelope Valley Press
As a dialysis patient, it’s difficult to understand the reasoning behind SB 1156. I suffer from Polycystic Kidney Disease, a hereditary chronic illness. My mother suffered from this disease, and I too was diagnosed in the mid-1990s. I began treatment for the inevitable End Stage Renal Disease that followed in 2012. I’ve known most of my life that I would end up on dialysis, but it was a difficult outcome to come to terms with nonetheless.
Dialysis, the treatment for kidney failure, is extremely time consuming and the hours add up quickly. Overall, I’m in my clinic three days a week for a total of 15 hours. This includes my treatment time, preparation to receive treatment and removal from the machine. Thankfully, I receive dialysis at a great facility with a staff that makes treatment more bearable.
However, because of the time it takes to receive dialysis and nature of my chronic illness, I’m unable to work. Many other people in clinics across California are in this same situation. Many of us don’t work or receive some kind of disability or retirement. We don’t make a lot of money, and what little we do have goes towards treatment and daily expenses like rent, food, and transportation. I live in a room provided by a friend. I don’t pay any rent and I’m still in not making ends meet. Having a chronic illness and a limited budget is not a good combination.
Treatment for chronic illnesses is extremely expensive. While many of us are barely making ends meet, some are lucky enough to be beneficiaries of charitable assistance programs that are the reason we can pay for our treatment. These programs help patients pay for insurance premiums and medications that would be an additional out-of-pocket expense otherwise. Money that many patients don’t have to spare. I myself have benefited from these programs on an occasion when I found myself faced with paying for a medication with a price tag of $3000.
There was no way I could pay for this medicine out of my own pocket, and there were no other options available to me. I was eventually able to receive a generic version of this medication, but in the time it took for that to occur I would have died a very painful death if it wasn’t for charitable assistance programs. In short, charitable assistance programs saved my life. Just like they save the lives of other patients across California who receive assistance from these programs to pay for insurance premiums.
Without this financial assistance, treatment would not be possible for many. The cost of paying for treatment is an almost insurmountable obstacle, even when you have financial assistance like help from a friend or from charitable assistance programs. Legislators who support SB 1156 either do not take into account the thousands of lives that will be negatively impacted by this bill, or they do not care.
Imagine the thousands of patients living paycheck to paycheck who will be affected if their charitable
assistance is restricted or lost. The impact will place thousands of lives in jeopardy. Legislators must take
patient lives into account when discussing and voting for this bill. Vote No on SB 1156.
Craig Scott is a Palmdale resident.