Shannel Reed is a 36 year old woman who was diagnosed with Sickle Cell Disease when she was three months old. Sickle Cell Disease is a genetic blood disorder where red blood cells become sickle-shaped and inefficient at circulating oxygen to the body. The disease can cause stroke, organ failure, shortened lifespan, and death. It is curable with a bone marrow transplant, but the mortality rate is so high that many people don’t choose that option. Hydroxyurea, a chemo medication Shannel takes that is considered standard treatment costs upwards of $600 a month without insurance meaning that without Medicaid, it would not be possible for her to receive the routine care she needs. Though this medication can compromise one’s financial situation and immune system, it is today’s best option. There are other treatments but she says unfortunately a lack of education about sickle-cell especially in Missouri, where there also happens to be a large population of sickle-cell patients, results in uneven and inadequate care.
Other barriers to comprehensive and dignified medical care for Shannel and other sickle-cell warriors are apathy and discrimination on the part of medical professionals especially in the Emergency Department. Shannel says, “when you’ve been with this illness for so long, you might be stoic so you might not be taken seriously at the ER because you’re not screaming at the top of your lungs. But you’re still hurting”. Shannel’s entire body is affected by Sickle Cell Disease, especially as she ages. She has Avascular Necrosis, meaning the bone is dying in her left hip and in her knees, Arthritis in her shoulders, knees, and tailbone, and Scoliosis. She also has chronic pain which can amplify immensely during a VasoOcclusive Crisis, (often called simply a “crisis”), when one’s cells stick together inside the veins, causing excruciating pain.
When she has to go to the ER in a crisis, needing to be admitted for fluids, pain medicine, and anti-inflammatories, she has been under-treated or dismissed and sometimes not treated at all. Shannel says with great certainty that denying sickle-cell patients the pain medication they need is very common. If doctors don’t trust their patients’ own understanding of their pain and the pain isn’t adequately managed the first time, she says “it becomes like a runaway train and gets worse and worse” resulting in a cycle of hurt and frequent ER visits.
She attributes these patterns to discrimination based on both medical history and race. Doctors and nurses, “judge patients by their skin tone and the medications they take”, by assuming they are drug-seeking thus delegitimizing their illness, compromising their care and risking their lives. Shannel says she is not alone in being discriminated against. Due to the inappropriate behavior of medical staff she has encountered, she is determined to advocate for sensitivity training as early as possible in the medical field.
Shannel has had a nurse at BJC in St. Louis tell her that the only way they would find out what was wrong with her was through an autopsy when she called for the results of a X-ray. She has many similar stories from other Sickle Cell warriors about patients being dismissed and even retaliated against because of their illness. Shannel asks of nurses and doctors, “what if it was your mother or your brother? If you keep that in your mind,” she says, “it will help you take care of that patient… doctors have a tendency to remove themselves emotionally, but you need emotions and good bed-side manner in order to properly treat patients”. Shannel is a tireless advocate and also works in the insurance field, so she has a multifaceted view of the health care system in America and the ways it needs to change.