The Not So Well Path
I learned that I might be dying almost by accident. A simple sentence buried in more than one hundred pages of documents the DOC had sent my lawyer after denying my petition for medical parole declared that doctors expected me to die within the next three years. That was one year ago.
The pronouncement of my potential fate had been written by a doctor for Wellpath, the $1.6 billion private vendor that contracts to provide health services to prisons and jail. The doctor had alerted several people about my prognosis — the Superintendent where I am housed was told; the DOC Commissioner was told; the administrators at Wellpath were told; however, no one told me.
For more than a decade, I had little contact with the prison medical department. I was fairly healthy when I came to prison, I ate well, and I exercised regularly. I loved to run. I heard horror stories from plenty of people about their experiences with health services, especially after Wellpath took over the department in 2018, so I was thankful that I rarely found myself in need of care from the Health Services Unit (HSU).
That all changed in early 2020 when I noticed an odd weakness in my right leg. It didn’t seem like much. I noticed it mostly when I attempted to stand or sit. The weakness was soon joined by muscle twitching and painful cramps. One morning in mid February I awoke to a cramp in my right thigh so strong that it felt as if the muscle was being unzipped down its center. I submitted my first Sick Call Request Form to the HSU that same day. A Wellpath nurse practitioner responded to my request several days later and said my symptoms were being caused by a small mass that had been discovered the previous November in a lymph node at my pelvis region.
The NP believed that all would be well as soon as they could address the mass. Unfortunately, she could not tell me when it might be addressed because Wellpath had yet to schedule an appointment with an oncologist. Over the next several months, the symptoms in my right leg became more noticeable. The growing weakness in my right leg caused me to stumble regularly, so I was issued a walking cane in May. Wellpath continued to insist that my symptoms would be relieved as soon as the mass was removed.
That July, I finally saw an oncologist at Boston Medical Center (BMC). The doctor who examined me said that the lump in my lymph node was almost certainly a benign fatty mass and that it would be removed using a simple surgery. The doctor also revealed that the symptoms I was now experiencing in both legs and both arms was in no way connected to the mass. He said that he had consulted with another doctor in the department and they felt that I had a potentially serious neurological condition and that I needed to see a neurologist urgently. Two months later, I spoke with a neurologist via telemed. By then, my cane had been replaced by a walker as my symptoms advanced. The neurologist shared that she thought that I may be suffering from motor neuron disease or a similar neuromuscular condition. She said that she needed to see me in-person and was going to request that Wellpath send me to the neurology clinic as soon as possible.
Over the next four months, however, Wellpath refused to schedule an appointment. I was told that the clinic wasn’t accepting appointments because of Covid-19, but the clinic told one of my lawyers that they had repeatedly called the prison asking them to send me. During this same time, Wellpath stopped responding to my Sick Call Request Forms. I submitted more than a dozen forms reporting progressing symptoms that included weakness in my trunk that made it difficult for me to sit upright and weakness in my throat and mouth that made it difficult to eat. I also reported injuries from falls. But for four months, I was totally ignored.
When a Wellpath provider finally saw me in February 2021, I was a shell of myself. I could barely stand, even with the walker. My gait had deteriorated to the point that my right foot would drag across the ground while my left leg would clop hard with each step. Often, my feet would roll or the muscles in my legs would give out causing me to stumble and fall. I spent most of my days in bed because I found it so difficult to sit upright for an extended period of time. I could no longer write effectively with a pen or shave myself. And, I had begun losing weight because I found it so difficult to eat. The Wellpath doctor who evaluated me made an immediate referral that I be seen by neurology and had me transferred to a medical unit in the prison called the Clinical Stabilization Unit, or CSU.
In the CSU, I was one of sixteen patients considered to be the medically most vulnerable. We were crammed together in a small open dorm lined up in rows of four hospital beds apiece. When in bed, my head was about one foot away from the head of the patient in the bed behind mine. My feet were about three feet away from the feet of the patient in the bed in front of mine. And the bed next to mine was only about five feet away from my bed. Two dingy bathrooms, a shower room, nurses station and officers station filled out the rest of the medical unit living area. I was assigned a bed in the middle of the room. The other beds were filled with mostly elderly men — several in their 80s — who rarely left their beds. One patient had advanced dementia and spent his days staring at old game show reruns on his television with no sound and retelling the same few stories over and over again to anyone who would listen. Another patient had survived Covid only to develop a deadly blood infection that he barely survived only to have a toe amputated due to his uncontrolled diabetes. Many of these same patients appeared to be receiving no medical care other than daily medications and occasional vital checks. I thought being placed in the CSU would rescue me from the medical quagmire I had been trapped in over the previous year, but I soon found myself only sinking deeper into the abyss.
I would not see a neurologist for almost four more months and that was only after several letters from a prisoner rights advocacy organization threatened legal action against Wellpath and the DOC. When I did see doctors at BMC, they determined that I indeed was suffering from a progressive neurodegenerative disease. They speculated that it may be ALS, also known as Lou Gehrig’s Disease, or a similar disorder. Another three months passed before I saw another neurologist at an ALS clinic who was less certain about the ALS diagnosis, but also appeared to be uncomfortable having a prisoner patient (according to another doctor) and suggested that I see other doctors. Deeper I sunk.
As I write this, it has been five months since I last saw a neurologist and I am unsure when I will next see one. All my symptoms have continued to advance and I have developed new ones. Today, I am wheelchair bound and require special padding and straps to hold me upright. I now require supplemental oxygen throughout the day and a noninvasive ventilator at night to breathe. I am on a highly specialized diet and I have to use a universal cuff to hold my utensils to feed myself. And, it is probable that not too far into the future I will require a feeding tube.
My companions in the CSU are in equal straits. The man with dementia died in February after he suddenly stopped eating and drinking, and, other than a couple of special nurses, no one on the medical staff cared enough to help him. He became so dehydrated that he had to be sent to the emergency room where he experienced organ failure when they attempted to rehydrate him. The man who lost his toe now sleeps most of everyday, as do several other patients… including me.
I still have no diagnosis which means that I am still receiving no real treatment. I am essentially warehoused inside a medical unit that Wellpath has been unable to adequately staff for many months. Since the onset of my symptoms, I have seen four different doctors serving as medical director of the facility, although we have been without one altogether since last November. Nurses seem to come and go almost weekly. And, with each passing month it seems to be more and more difficult to get answers to even basic medical questions.
Wellpath in Massachusetts has collapsed under the weight of its own greed. The company has stripped away every penny possible from the $184.5 million the DOC paid for prisoner healthcare last year. (A $10 million increase from the previous year.) Since the company acquired the contract in 2018, the DOC population has decreased by more than 24%, while healthcare spending soared by more than 30%. All the while, the population has continued to age to the point where Massachusetts now has the oldest prisoner population in America. This combination of factors has created a perfect storm where resources are stretched so thin that Sick Call Request Forms are regularly ignored, medications are not reordered as needed, and specialist appointments are delayed or canceled altogether.
I may be dying — perhaps in fewer than twenty-four months. The fact that I don’t know if that statement is true or not is worse than not being able to walk, to eat, or to breathe. The reason I don’t know the truth about my fate is because Wellpath misdiagnosed my condition for five months, ignored it for four more months, and fumbled from one delayed and uncoordinated appointment after another. My reality is that because of Wellpath, the doctor who may ultimately diagnose my condition is the coroner.