Second Chances

One of my first patients presented with hemoglobin of 2 g/dL and severe pancytopenia (anemia) and was diagnosed with high-risk myelofibrosis. He was a 60-year-old man. Prolonged neutropenia had caused invasive fungal sinusitis (a serious fungal infection of the sinuses), and he required regular blood transfusions. While caring for him, I had the opportunity to get to know him closely as a person. He had been born in an unsafe neighborhood in Mexico, into a family whose members were involved in criminal gangs and corrupt surroundings. As an adolescent, he sustained a stab wound to the chest that nearly killed him and was treated at home. It left a prominent scar, as though to remind him of all the challenges he had faced to survive. As an adult, he rejected his family and that way of life and immigrated to the USA for a better life. He left Mexico at risk to his life for the chance of a peaceful life in a small town, where he could live honestly as an auto mechanic but would struggle financially. Despite feeling ill for a long time, he delayed seeking health care so he could keep working and paying his bills. Despite confronting a life-threatening disease, bearing the hardships of extreme poverty, having a difficult past and lacking family support entirely, the patient sitting before me was gentle and always expressed deep gratitude for our care.

The only treatment that could cure his disease was allogeneic stem cell transplantation , without which he had only months to live. The first step was finding a suitable donor, but this would be difficult because our first choice was a matched related donor, and my patient was completely estranged from his family. After he reluctantly contacted his siblings in Mexico, we were disappointed to learn that they did not want HLA (human leukocyte antigen) typing or to donate stem cells for him. I remembered that he had a son, aged 21, stationed across the country in the Navy. As haploidentical transplants were increasingly used, we sent his son an HLA test kit and found that he was a suitable donor. The next step was finding an appropriate transplant center. This was also complicated: transplantation cost 200 thousand dollars, and even well-insured patients faced substantial copayments. Patients additionally needed housing near the transplant center, reliable transportation and someone able to provide sufficient care. Looking at my patient, I felt the weight of this challenge on my shoulders. Years of physical labor and hardship had worn down his already thin, frail body. He wore an old cotton T-shirt, faded jeans and battered sneakers. He lived in rural America, far from any comprehensive medical center. He drove a pickup truck that regularly broke down. He could afford neither the fuel to attend appointments in Washington nor the time away from work.

We contacted many transplant centers, but all listed caregiving and financial requirements my patient could never fulfill. After these applications, we approached the National Institutes of Health (NIH), which did not require insurance or copayments, potentially removing the financial barriers. Provided he could arrange to live nearby after transplantation and find someone to care for him, NIH agreed to perform the transplant within a clinical trial . But how could he afford to live in Bethesda, one of the country’s most expensive cities, and also find a caregiver? Everything began to seem hopeless. My specialist colleagues and nurses at the hospital, who had regularly witnessed health care inequalities for years, were not particularly surprised. Although they found serving disadvantaged patients entirely fulfilling, they had also been frustrated and ultimately desensitized by the barriers of a system that often let down the most vulnerable patients. Everyone accepted that he would soon die.

During my hematology-oncology training at Keesler Air Force Base, I took for granted the fact—and value—that patients’ care was unaffected by their social or financial well-being. The military health insurance system pools funding and is equally accessible to service members. All beneficiaries, regardless of ethnicity, socioeconomic background or rank, can access comprehensive care without substantial medical payments, insurance premiums or copayments. This access entirely eliminates or substantially reduces disparities in cancer outcomes. When I entered civilian hematology and oncology subspecialty training at a hospital in downtown Washington, I quickly learned not to take the military approach to health care for granted.

I could not believe that a man who had overcome so much would die because of inequity, rather than because no treatment could cure him. It reminded me of growing up in a broken family in rural Texas. I, too, lacked the resources and support to access opportunities that were difficult for people from my background to obtain. Without the Air Force’s support throughout my premedical and medical education and its gift of a better life, I would have had no chance of reaching my position on my own. The Air Force had set aside my past and given me a second chance . Why could our health care system not forget my patient’s past and give him a chance to live? Why could his son not have a fighting chance to keep his father?

I had an idea, though I knew it was a stretch. Perhaps if the Navy stationed his son nearby, he could be his father’s donor, caregiver and support system. We explained the situation to the son, who loved his father and was ready to do everything possible. But he was only an E-2 (among the most junior military ranks), with neither financial resources nor powerful connections. What incentive could the United States Navy have to support this? Knowing we were asking a great deal, my specialist colleague and I wrote to his military superiors, explaining the situation and our requests. Days and weeks passed. As the stress of uncertainty accumulated, my patient began to deteriorate physically and emotionally. Just when we thought we were losing him entirely, his son told us the Navy had granted our request! Our hard work had succeeded in breaking down barriers of inequity, and we were profoundly happy and proud. Selfishly, we were relieved not to bear the burden of helplessly watching this gentle man die alone from a treatable disease. In due course, he underwent transplantation and his son transferred to his new duty station. Now, approximately 4 years later, my patient is alive and living well.

One of the most rewarding and satisfying moments of my first year as a newly qualified specialist was when his son contacted me to express gratitude for helping his father. It reminded me why I went to medical school and why I chose oncology: To give at least some of the least fortunate people in life a second chance. Their misfortunes are not limited to cancer and its comorbidities (additional diseases). My patient came from a social class facing systemic barriers. We overcame them by looking beyond that background and insisting that he deserved the same opportunities as wealthy patients. Thanks to NIH’s system enabling some of the poorest patients to participate in clinical trials, and the United States Navy’s willingness to set aside members’ ranks and enable a son to give his father the gift of life, my patient gained a second chance. What saved my patient’s life was neither the right insurance nor personal wealth, but humanity.

The article above is a translation of an article published on 30 October 2019 in Journal of Clinical Oncology , a scientific journal, written by Dr. Christin Blair DeStefano, entitled "Second Chances" .