In many states, including Iowa a person with a terminal disease does not have the right to decide their own death. I believe it is immoral and wrong that these people do not have this right. This is important to me because I have an incurable fatal disease called nephropathic cystinosis, there is only one treatment, and eventually I will progress to a state where my body cannot take any more and I die.
This is why I support the Iowa Death with Dignity Act, House File 65.
Nephropathic cystinosis is the most common form of cystinosis. Although all forms of the disease affect the body similarly, the disease causes the amino acid cystine to accumulate in the cells. As the cystine accumulates in the cells, it slowly damages organs including the kidneys, liver, thyroid, eyes, muscles, and brain. Those of us with this disease appear normal at birth, however before one year of age we have excessive thirst and urination, and failure to thrive. We are smaller than others our same age and often tend to be in the lowest percentile or even off the pediatric growth chart. In addition, we have delays with walking and bearing weight.
Unfortunately, cystinosis has only one treatment, cysteamine. Cysteamine slows the progression of the disease by removing the cystine from the cells. There are only two forms of cysteamine, Cystagon and Procysbi. Cystagon was approved by the Food and Drug Administration (FDA) in 1994 and must be taken every six hours every day with many side effects. Procysbi, on the other hand, was approved by the FDA in 2013 for the treatment of only nephropathic cystinosis in adults and children six years and older. Procysbi is a delayed-release form of cysteamine that must be taken every 12 hours every day with many of the similar side effects as Cystagon. For our eyes, we have only one choice, Cystaran, which was approved by the FDA in 2012. The medication must be put in the eyes, one drop in each eye every hour while awake.
Nevertheless, this is not a cure. Therefore, our organs fail, with the kidneys going first. Thus, another kind of treatment is indicated, kidney transplantation, which as become a standard in the treatment of cystinosis because cysteamine only slows the progression of the disease. If not treated with cysteamine, kidney failure occurs around 12 years old or younger. With cysteamine, the damage of the disease commonly leads to kidney failure by the late teens into the early twenties. Most of us will need to be placed on dialysis to keep us alive while we wait for a kidney, which causes us more pain, and suffering; sometimes death occurs while waiting for the kidney.
Opponents claim that this bill is in violation of their moral and religious values because it is taking away life instead of supporting life. They claim that suicide is never the right or moral answer. This belief does not pertain to the bill, the bill is giving a terminally ill person who already is suffering and near death to have a choice in the manner in which that person dies. They wish to die with some dignity. This could be their religious way of ending their very intense physical suffering.
I believe forcing them down a path of pain and suffering to where they have no control is immoral.
My disease, nephropathic cystinosis is fatal. It causes pain and suffering.
We fight, I have fought, and I am fighting.
However, when that year arrives and my family and I know that enough is enough, I would like to be secure in knowing that I will have the right to choose death with dignity instead of the current alternative. A painful death, where I have no control over my own body and its functions, where I will have tubes going in and out of my body everywhere. I have hope that there will be new discoveries in treatment and a cure, however anyone who is terminally ill should have the right to die with dignity.
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