“Go Back to California”
When Providers Fail Transgender Patients
A transgender doctor is mistreated by a health care provider—and wants to make the system better for patients like her.
Laura Arrowsmith
Go back to California, the physician at a minor emergency center in a suburb of Tulsa, Oklahoma, told me. The words were flung—practically vomited—at me. I had gone to the center, a relatively new building that was beautifully decorated, on a Sunday morning in 2010 in terrible pain due to complications from a previous surgery. The receptionist was pleasant, and the physician had entered the exam room smiling. He was about 50 years old and seemed friendly. But when I explained why I was there, the friendly smile quickly disappeared, and his face contorted into an expression of disgust and revulsion.
Two days earlier I had returned to Tulsa from a week-long stay in California, where I had undergone a secondary labiaplasty—a procedure that refines the shape of the inner labia of the vagina. For this procedure, I had returned to the surgeon who performed my original genital reassignment surgery in 2005, confident that she could make some minor improvements. She was one of the leading specialists in the world, a gynecologist who herself had traveled the same medical journey as me, from male sex assigned at birth to female. After returning home from this second surgery, I had developed a minor abscess around one suture. It was extremely painful and terribly frightening. I lived more than a thousand miles from where the surgeon practiced, and my family practice physician was not available on the weekend. Hence, the demoralizing and disastrous weekend visit to the minor emergency center.
The doctor’s words reverberated in my head: “Go back to California.” He fled the exam room soon after he’d uttered them, without examining me or obtaining any further history.
I was devastated, angry, scared, embarrassed … and ashamed. It wasn’t the first time a physician had made me—also a physician—feel this way. And it’s a problem in health care that simply must change.
I am a transgender woman, meaning that I was identified at birth as male, but I have known since my earliest memories that I am a woman. When I was growing up in small-town Kansas during the 1950s and 1960s, there was no internet, and there were no books, television shows, or other media that could have affirmed for me that I was not the only person who felt this way.
For many Americans, life was easier, simpler, and less cluttered during the decades of my childhood. For me, that was not the case. My only sibling, a younger sister, was my main playmate before my school years began. We played with dolls—dress-up and paper—during the day when my father wasn’t around. I learned quickly that in the evenings when he was home, it had to be trucks and toy guns, cowboys and Indians. He was the gender police for me.
“You walk like a girl,” he would tell me. Or, you throw a ball like a girl. You stand like a girl. You get dressed like a girl. You blow your nose like a girl (yes, he said even that). These were behaviors that were to be eliminated. I quickly learned to be ashamed of the woman inside me and became fearful of showing any suggestion of femininity lest I be punished. At night, I would pray for God to let me wake up as a girl, but I intuitively knew that I could share my true feelings with no one else. My father was never physically abusive, but he was an intimidating presence not to be crossed or disappointed.
Suppression and denial became my daily ritual. I spent decades living as society expected me to do, and hid “her” (my true self) behind a veneer of masculinity. I went to college and medical school to become an osteopathic physician. I got married and helped raise four children.
Yet in moments when I found myself alone, I would put on women’s clothing. It just felt so right. I would look at myself in a mirror and be so disappointed in the reflection. Sometimes I “borrowed” a few items of my wife’s clothing. When I could, I purchased my own feminine clothes, carefully hidden to put on in private moments. Eventually, I would promise myself I would never dress up that way again. I would discard my treasured clothing in some place where it would never be discovered. This cycle repeated itself endlessly.
This emotional turmoil is common and is known as “gender dysphoria.” In some trans people, the disorder may be accompanied by substance abuse, self-harm, or eating disorders as a means of coping with the tremendous pain that is experienced. Forty percent will attempt suicide.
By the time I was in my 50s, my gender dysphoria—which previously would strike me for a period of unbearable hours, days, or even weeks but then would pass—had become constant. The condition was there when I awoke and lasted until I fell asleep. It was like a car alarm I was powerless to silence.
One afternoon I parked my truck in a parking lot next to a busy four-lane street. I got out of the truck and watched as a large red semi headed my way. I walked in front of it, hoping my death might be viewed as an accident. The driver managed to swerve away from me, somehow, and I was unharmed. The next thing I remember, I was walking back to my truck. I sat inside and cried and cried. It was then I knew that I had to find help. Soon.
By then, with the advent of the internet, I was able to learn more about what I was feeling. In time, I found websites with credible information. One of the first things I learned was that there was a word for people like me: transgender. Soon I found other websites that provided information that likely saved my life—lists of mental health therapists who provided therapeutic support for transgender people and information about successful hormonal and surgical treatments that could enable me to become my true self. Finally, I had hope. I found an online support group of transgender women at various stages in their journeys: They were happy, beautiful, and alive. Over the next few months, I was able to connect with some of them by telephone and in person. At last I had found the path to becoming who I felt myself to be. I ran down that path and never looked back.
Gender identity—that internal sense of knowing oneself to be a man, woman, or nonbinary—is understood to typically be fully developed by around the age of four years, sometimes even earlier. Gender identity is unchanging and unchangeable, hardwired into our brains. All of us inherently know our gender identity: it is not a conscious decision but rather one aspect of everything that makes each of us an individual. A transgender person is simply born with a gender identity that does not match that person’s body.
Research has shown that being transgender is most likely due to a hormonal imbalance in utero that happens during the period of a pregnancy when the fetal brain is differentiating into a male or female brain. Autopsy studies, functional MRI scans, and SPECT (single-photon emission computed tomography) scans suggest that some people are born with a male brain and a female body, or vice versa. (Male and female brains have been shown to be slightly different in structure.) These studies suggest that transgender people have the brains that match their gender identities even before taking any cross-sex hormones.
It should be noted that not all of the people who identify as transgender feel themselves to be of the opposite sex. The 2015 US Transgender Discrimination Survey of approximately 28,000 trans people showed that many respondents identified themselves variously as gender nonbinary, androgynous, gender nonconforming, gender queer, gender fluid, or agender. Younger generations are moving beyond the idea that one must live in the world with a strictly binary (male or female) gender identity.
A lot has changed. During my childhood, teen, and even adult years, transgender people were viewed as defective. Attempts to cure what was viewed as deviant behavior or mental illness included electroshock therapy, massive hormone doses, intense psychotherapy, and psychiatric hospitalization. Aversion therapy, which attempted to replace “maladaptive” with “normal” behavior through a system of negative stimuli and rewards, was advocated. None of these treatments were effective in treating transgender children, teens, and adults. Research and clinical experience gradually demonstrated that it is not efficacious to attempt to “fix” the brain; rather, it is effective to provide medical and surgical treatment (if desired) to change the body to conform with and affirm a person’s gender identity.
When I began my journey to become my authentic self, my family practice physician of many years refused to see me. She said that I had lied to her about who I was. This was a shock—but then, I guess I had lied to myself for decades too. On numerous other occasions I have been refused care by physicians, sometimes due to discrimination and bigotry, but at other times due to an expressed concern that “we have no idea how to care for a transgender patient.”
A 2010 Lambda Legal study showed that 50 percent of transgender patients who were fortunate enough to find a physician who would care for them had to teach the physician what to do. Providing sensitive medical care to transgender patients should be relatively straightforward. Multiple organizations such as the Endocrine Society and the World Professional Association for Transgender Health (WPATH) provide online protocols for this type of medical care. The July 2016 issue of the Journal of Family Practice also published a fairly comprehensive article outlining ways to provide sensitive care to transgender patients.
But because so few physicians will treat this population, many transgender people have given up trying to find medical care or are afraid to seek routine and emergency care. A January 2014 Williams Institute study on transgender suicidality showed that 60 percent of transgender patients who, because of antitransgender bias, are unable to find physicians who will provide medical care for them have attempted suicide.
Fortunately, after several years, I finally found a family practice physician who is accepting and open-minded. I was the first transgender patient she had treated, so I have had to educate her about our treatment, follow-up care, and culture. She has proved to be a wonderful learner.
Appropriate treatment for transgender patients, as outlined by the WPATH standards of care, includes supportive mental health counseling to deal with the emotional turmoil created by years of dealing with the body-soul-brain mismatch. Medical treatment includes hormonal therapy to feminize the male body or masculinize the female one. Various sophisticated surgeries can be performed to do the same thing. Numerous professional organizations, including the American Medical Association, have issued policy statements to the effect that gender affirmation surgery is medically necessary for the treatment of gender dysphoria.
It should be noted, however, that most transgender people do not choose gender-affirming surgeries. One common reason is a lack of insurance coverage. Many patients have no financial ability to pay for any medical care. Such treatment also may be contraindicated because of a co-occurring medical issue. Still others choose not to transition out of fear of loss of employment, family, extended family, or friends.
Unfortunately, information about the appropriate treatment for transgender patients has not been taught in medical schools or postgraduate programs until recently, and even now it is only infrequently included in the basic few hours of LGBT education that the schools and programs provide. Most physicians currently in practice have no training in how to care for transgender people.
In fact, several studies, including those by Lambda Legal and the National Center for Transgender Equality, have consistently shown that there is extensive discrimination in health care directed toward transgender patients, including the refusal of medical care, the provision of incorrect care, and verbal or physical abuse by physicians.
There is a critical need for state and federal transgender antidiscrimination legislation to ensure not only employment rights—the focus of most current efforts—but also the right to competent medical care, housing, and education.
After being refused medical care for my acute abscess at the minor emergency center, I was able to tolerate the pain until my family practice physician could drain the abscess and provide antibiotics. I healed physically without further difficulty, but the emotional scars from this event and countless others remain. When I meet a new physician for the first time, I automatically anticipate rejection or discrimination—or at the very least, the need to educate the physician about the transgender population, the proper terminology to use, and what constitutes appropriate care.
During medical school, my peers and I were taught about obscure medical diseases, conditions that I never saw during my 30-plus years of medical practice. Many of these were covered multiple times and in a variety of classes. Transgender patients, in contrast, are not uncommon. Every practicing physician will encounter transgender patients in his or her practice. Yet medical education in the United States is failing to teach medical students and residents how to care for this population. This has to change. No patient meeting a physician for the first time should fear being denied care or given incorrect treatment. The expression on a caring professional’s face should be one of concern and interest, not a snarl of angry disgust.
Volume 36, Number 9. September 2017.
A Simple Case of Chest Pain
Sensitizing Doctors to Patients with Disabilities
A doctor who stutters confronts the stigma against patients—and providers—with disabilities.
Leana S. Wen
It was midnight in the emergency department (ED), and the senior resident, Stan, was on a roll. Clad in green scrubs two sizes too small for his body to emphasize his muscular physique, he dashed between the ambulance bay and the critical care rooms.
“Wen!” he barked at me, the intern. “Come over here to do the ‘rule-out heart attack’ in three.” Two medical students grabbed their notepads and followed Stan and me into the room.
The patient did not look as if he was having a heart attack. Dressed in a tailored suit, the young man with a neat ponytail sat in bed, texting on his BlackBerry. The nurse’s note said the 31-year-old was having chest pain. His vital signs and electrocardiogram were normal.
“Good evening!” boomed Stan. We formed an imposing circle around the stretcher. “How are you doing?”
“I’m f-f-f-f-ine,” the young man said. He looked up at us. “Call me J-J … J-J-J-J …”
Stan glanced over my shoulder at his chart. “James, right? Do you still have chest pain?”
I dutifully wrote down that the patient appeared in no obvious distress and was breathing normally. But James seemed distressed about something. “N-N-N …” he stammered, his eyes looking around the room until they settled resolutely on the ground. His face was red with effort. Sweat pooled around his brows. His brown eyes swept upward and landed on mine. I gave him an encouraging smile. “N-N-No, I’m g-g-good,” he said.
Stan was heading for the door. “Talk to him; I’ll put in for labs and a chest X-ray,” he called out as he left the room, the students trailing behind. “Oh, and make sure to say things sloooowly so he understands.”
By the look on James’s face, I could tell that he understood just fine. I did, too. I closed the door. “I’m so sorry,” I said. “Let’s start over. My name is Leana. I’m your doctor. I’m also a person who stutters.”
I wasn’t always open about being a person who stutters. In fact, it took me 22 years to admit to myself that I stuttered and needed treatment for it. From an early age, I knew that I had trouble getting out my words, but after seeing classmates bully other kids for this, I vowed never to let my disfluency show. I became a covert stutterer, hiding my disability using tricks such as avoiding certain words and situations. I could never ask for “water,” only “a drink.” “Pen” became “something to write with.” Once, when giving a talk on the Roman Empire in fourth grade, I was so afraid of stuttering on the word “Roman” that I jabbed a pencil into my thigh so that I would be released from class to see the school nurse. The little piece of lead is still there today.
By the time I went to college, I became so proficient at hiding my stuttering that I rarely revealed it in public. By medical school, it became more difficult to hide. It seemed a cruel irony that I had trouble with the word “doctor” and had to come up with other ways to address my attending physicians. During an infectious disease lecture, I was called on to answer a question. With the spotlight on, I could not get out the word for a particular disease caused by parasitic worms—“schistosomiasis”—and there was no appropriate substitute. “Sch-sch-sch,” the professor imitated, shaking his head. “Why don’t you come back when you learn to speak?” His sharp words, like the broken piece of pencil lead, will always stay with me.
As I sat with James in the ED bay, I thought back to the scorn of classmates and professors I faced over the years. “I’m not stupid,” James said. He finally looked me in the eyes, and I could see tears gathering. “I just have trouble getting out w-w-w-words sometimes.” I sat and talked with him for about 10 minutes. He told me he was a lawyer. He always knew he had a problem with his speech, but, like me, he was able to hide his stuttering most of the time.
Two weeks prior to our meeting in the ED, James had been promoted to a position in his law firm with greater visibility and more demands for communication with clients. The harder he tried to speak fluently, the more struggled his speech became. The evening of his visit to the ED, James had been having dinner with clients when he began to stutter on every other word. He struggled with his speech so much that he began sweating and breathing quickly. His colleagues asked if he was having chest pain, and when he nodded, they called for an ambulance. That is how he ended up sitting on a stretcher in the ED struggling to speak with me.
James didn’t need blood work or an X-ray, I realized. He needed someone to listen to him. His providers didn’t have to be experts on speech disorders, but they needed to have some basic understanding of how to recognize and treat patients who stutter. It’s a disorder that affects at least three million Americans, or 1 percent of the population.
While medical school curricula are replete with lectures on “one-in-a-million” diseases, little attention is devoted to teaching future doctors how to care for people with speech disorders or other disabilities. A 2005 special report commissioned by the Special Olympics found that only 25 percent of medical schools included in their curricula any content regarding people with disabilities. A 2012 Academic Medicine article by Laurie Woodard and colleagues found little improvement, with accreditation councils still not requiring clinicians to have knowledge of caring for people with disabilities.
Yet, according to the 2010 census, nearly 20 percent of Americans—representing 57 million adults and 5.2 million children—have a disability. The Americans with Disabilities Act (ADA) of 1990 defines a person with disability as someone who has a physical or mental impairment that substantially limits one or more major life activities. The World Health Organization adds that disability is not the physical health condition itself but the limitation experienced because of the health condition in interaction with societal and environmental barriers. Some people are born with their disabilities; others may acquire them through injury, chronic disease, or aging.
As we talked, I told James what it was like to go through medical training as a person who stutters and how I saw firsthand the ignorance and prejudice some health care providers harbor toward patients with disabilities. For instance, I remember an attending physician berating me for testing someone with pelvic pain for sexually transmitted diseases. The patient was “wheelchair-bound”; surely she couldn’t be sexually active, the attending said. On the wards there were frequent jabs about people disabled from chronic pain—why couldn’t they just work like everyone else?
Like James, patients may have had unnecessary tests ordered because of their disability. Doctors and nurses label such practice with the disparaging term of “veterinary medicine.” In other words, just as for an animal that can’t speak for itself, they order tests instead of talking to patients who are perceived as being “slow” or “difficult.” These patients often receive inadequate care: either doctors can’t see past their disability and attribute all problems to it, or doctors fail to acknowledge the true impact of their impairments.
Numerous reports have documented that people with disabilities have poorer health and receive inferior health care. According to the National Health Interview Survey, 3.4 percent of adults without disabilities report fair or poor health compared with 30.6 percent of those with difficulty seeing or hearing, 37.9 percent of those with movement difficulties, and 63.8 percent of those with cognitive difficulties. People with disabilities are more likely to be obese, inactive, and smokers, and yet they receive less information on screening and other preventive services.
They also face significant barriers to accessing care. In a 2013 study, Tara Lagu and colleagues described a telephone survey of 256 doctors’ offices in four cities. Researchers called the offices to make an appointment for a fictional patient who was obese and paralyzed from the waist down. More than one in five offices stated that they could not accommodate this patient, citing reasons such as lack of trained staff and lack of equipment to transfer the patient from wheelchair to exam table.
As I saw blatant examples of unequal and insensitive care to patients with disabilities, I felt anger, then shame and fear. I knew that the right thing to do was to speak up, but I was so afraid that I would be exposing myself and my own disability. Throughout medical training, my greatest fear was that my supervisors would find out about my stuttering and deem me unfit to fulfill my dream of becoming a doctor. There were few doctors with disabilities to serve as role models. Although one or two of my professors stuttered, they never talked about it. I don’t recall anyone else, not a colleague or superior, who was open about having a disability. Numerous studies have reported that physicians harbor negative perceptions of people with disabilities. The stigma is compounded by lack of exposure: two surgeon general reports cite lack of provider training as a major barrier to equitable care for people with disabilities.
James’s blood tests and X-ray came back: the results were normal. I went to give him the good news, but he didn’t seem relieved.
“I know it’s not a heart attack,” he said. “But what do I do next time this happens?”
I told James about how speech therapy has helped me address feelings of fear and shame about my disability. Becoming totally fluent isn’t the goal of speech therapy—I continue to stutter from time to time. The goal is to say what we want to say without avoiding words or situations. As I gave him his discharge papers, James and I exchanged numbers, and I assured him that I would follow up with information on therapy and support groups in the area.
Improving care for people with disabilities is an ethical imperative. The United Nations Convention on the Rights of Persons with Disabilities affirms that people with disabilities “have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.”
Because nearly every provider will take care of substantial numbers of people with disabilities during his or her career, health professional education must mandate training focused on recognizing and caring for people with disabilities. Some medical schools have started pilot programs. At the University of South Carolina, for instance, a rehabilitation specialist with a spinal cord injury and a family medicine professor with a daughter who has a cognitive impairment teach a 90-minute course for medical students that emphasizes the biopsychosocial context of disabilities. At the University of South Florida, medical students visit community centers, participate in service learning, and interact with patients with disabilities. Subsequent research has shown that both the South Carolina and Florida programs increased students’ comfort with and willingness to provide care to people with disabilities.
These early efforts are evidence that early educational programs can work. The Association of American Medical Colleges, the Accreditation Council for Graduate Medical Education, and their osteopathic counterparts should make learning to care for people with disabilities part of the required curriculum. Kristi Kirschner and Raymond Curry proposed six core competencies for medical trainees in a 2009 Journal of the American Medical Association article. They suggest, for example, that medical students should demonstrate that they can treat patients who have disabilities with compassion and dignity, and resident physicians should be able to address their patients’ acute medical issues.
The Affordable Care Act broadly supports the development of curricula to train health care providers on better care for people with disabilities. This recommendation is a good start, but it needs to be backed by funding to implement a national curriculum for medical, nursing, and other health professional students. By developing interdisciplinary modules and ensuring that people with disabilities are part of every step of the curriculum implementation, such a national curriculum can be a transformative model for patient-centered medical education.
Finally, students with disabilities should be encouraged to enter the medical profession and to educate others about their experiences. Disability rights advocates have long held that doctors with disabilities can deliver safe and effective health care and, in fact, may have advantages in terms of the empathy and communication skills they bring to their work. Medical societies can be proactive about establishing technical standards for each field and can actively recruit a diverse workforce that includes people with disabilities. Health care providers who themselves have disabilities can serve as powerful advocates and begin to counter prevalent biases and stigma.
It took me until the end of medical school to accept my own identity as a person who stutters and to be open about it with others. Talking to people about stuttering and advocating for people with disabilities have been instrumental in my own healing. Now, as an attending, I lecture to health professionals and students about my experiences. I provide advice for how to treat patients with speech impediments. Let them finish their sentences, for example. Look them in the eye, nod, and be encouraging. And speak up when you see someone receiving inadequate care because of their stuttering or other disability.
At the end of my ED shift that night, I asked Stan if we could have a word. We walked to an empty trauma bay. My hands were shaking, and I could hear my own stutter return as I began to explain what was actually going on with James and how Stan’s comments hurt him—and me.
There was a long silence when I finished. “Do you have his number?” Stan asked me. I did. To my surprise, he took the number and called James to apologize. Stan then asked me to put together a seminar on disabilities for other trainees in our hospital. In the seminar’s first session, medical students and residents began by discussing how they had also witnessed inappropriate behavior toward people with disabilities but were too afraid to speak up.
I invited James to be the inaugural guest lecturer in a series of small-group, patient-led rounds. He talked poignantly about the dynamic nature of disability and about how disability is a human condition that everyone will encounter in his or her lifetime. I’ve kept in touch with James, and he and I mentor a group of college students who also are people who stutter. Six years later, James is a partner at his law firm and speaks openly about being a lawyer who stutters. He, too, likes to tell the story of how a simple case of chest pain led him to accept his identity and become a mentor, teacher, and advocate.
Volume 33, Number 10. October 2014.
Editor’s Note: The senior resident’s name was changed to protect his privacy. The patient, James, asked that his last name be omitted.
Grasping at the Moon
Enhancing Access to Careers in the Health Professions
A former Secretary of Health and Human Services reflects on what’s needed to enable more minorities to become doctors and other health professionals.
Louis W. Sullivan
When I was a child in our small town of Blakely, Georgia, the seat of Early County, there were only two doctors. Both were white, with separate waiting rooms for their white and black patients. For blacks, this usually meant going around to the back of the building to enter the blacks-only waiting room.
Growing up in rural southwest Georgia in the 1930s, during the Great Depression, I witnessed poverty, poor health, and deprivation firsthand in our community. We lived under a social structure of legally enforced brutal segregation. Blacks could not vote or otherwise participate in government. For employment, they were relegated to lower-paying positions, if they were fortunate enough to have a job at all.
Most black farmers were not landowners; they worked as sharecroppers on land owned by whites. During the planting, tilling, and harvesting of the crops, the white owner provided the funds for seeds, fertilizers, tractors, and other equipment. Labor was provided by the farmer. At the end of the season when the crops were sold, the white owner would be repaid first, and any funds left over would be divided between the tenant farmer and the white owner. For many black farmers, this worked to their extreme disadvantage.
There were no black doctors, dentists, lawyers, or engineers and few black-owned businesses in our community. Most black residents worked at white-owned businesses, on farms, or in white homes as domestic workers.
My father, Walter W. Sullivan Sr., had moved our family from Atlanta to Blakely in 1937, when I was almost four years old, and he established the first black funeral home in Early County. He also operated an ambulance service, where my older brother, Walter Jr., and I helped out. That’s how, a year later, in Bainbridge, Georgia, 41 miles south of Blakely, I met the only black physician in southwest Georgia at that time, Dr. Joseph Griffin. It was a life-changing experience for me.
Dr. Griffin had built a 25-bed brick hospital and clinic—an unusual building in that part of the United States at that time, where most structures owned by blacks were made with wooden siding. He was highly admired in the community. He could cure those who were sick or injured, which seemed like magic to me. I already loved science and nature, and I decided that I wanted to be just like Dr. Griffin. I wanted to help people who needed a doctor. And, like Dr. Griffin’s patients, my patients would be treated with the respect and dignity they deserved. Black patients would be addressed as “Mrs. Jones” or “Mr. Williams” instead of by their first names, as they were always addressed by white doctors and their staffs.
My quest for equal treatment of patients regardless of race was instilled in me by my father. He had founded the first chapter of the National Association for the Advancement of Colored People (NAACP) in Blakely in the 1930s and brought a lawsuit against the county and state governments because of Georgia’s primary voting system, which did not permit blacks to participate. He initiated the annual Emancipation Day celebration in our town, held on January 1, with a parade downtown around the courthouse square and bands, speakers, picnics, and voter recruitment and education programs.
My mother, Lubirda, was a schoolteacher, but because of my father’s political activism, she was never able to get a position as a teacher in our local school system during the 20 years my parents lived in Blakely. Instead, she traveled daily to teach in communities outside of Early County, between 14 and 40 miles away. My brother and I were enrolled in the schools where she taught, and we traveled with her.
At age five, after meeting Dr. Griffin, I told my parents that I wanted to become a doctor. “That’s wonderful, Louis,” they exclaimed. “You would be a great doctor.” That was all the confirmation I needed. From that date on, there was never any doubt in my mind that I was going to provide needed medical services in my community with dignity and respect for the patients.
In 1950 I enrolled at Morehouse College. Though my mother was an alumna of Clark College in Atlanta, and my brother had enrolled there a year earlier, I was impressed by the number of black doctors who were alumni of Morehouse, a predominantly black, all-male college.
At Morehouse College, my classmates and I came under the influence of the school’s challenging educational and social environment and dedicated faculty and staff, led by the school’s president, Dr. Benjamin E. Mays. He was a sophisticated, well-educated man of great integrity and impeccable conduct—a true role model. All of us wanted to be like Dr. Mays. In his eloquent weekly chapel addresses to the students, he challenged us to “reach for the stars and grasp at the moon.” He said that each of us was born to make our own unique contribution to the world; our task was to find out what that was and work to achieve it. We were also encouraged to work for the elimination of a segregated society and for the uplifting of ourselves and others.
Four months after graduating from Morehouse in May 1954, I entered Boston University School of Medicine. It was the year of the landmark Brown v. Board of Education decision by the US Supreme Court that declared segregation in schools to be unconstitutional. I was the only black in a class of 76 medical students.
My family had only modest resources, but I had no financial concerns about attending medical school. Scholarships were available to financially needy students like me, and medical school tuitions were not in the stratosphere where they are today, costing as much as $60,000 per year. I worked at summer jobs to help cover the costs. The concept of having to borrow and incur massive debt to become a doctor did not exist during my medical school years. When I graduated, I had only $500 in educational debt, which I paid off by the end of my internship year.
After postgraduate training in internal medicine and hematology at New York Hospital–Cornell Medical Center and at Thorndike Laboratory–Harvard Medical Unit at Boston City Hospital, I eventually became a professor of medicine at Boston University and chief of the Division of Hematology at Boston City Hospital.
In 1975, after living 21 years in the northeast, I moved back to Atlanta. Morehouse College had recruited me to be the founding dean of Morehouse School of Medicine, the only predominantly black four-year medical school established in the United States in the twentieth century. After the medical school became independent from Morehouse College on July 1, 1981, I served as president of the medical school until January 20, 1989, when I was appointed by President George H. W. Bush to serve as health and human services secretary.
At that time the Department of Health and Human Services (HHS) had the fourth-largest annual budget in the world: $600 billion, exceeded only by the government budgets of the United States, Japan, and the Soviet Union. (By contrast, the budget of the US Department of Defense was $300 billion in 1989.) HHS had 125,000 employees and managed more than 250 programs, including Social Security, Medicare, Medicaid, the Food and Drug Administration, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention, and many others.
During my tenure as secretary, from 1989 to 1993, HHS achieved much. We launched Healthy People 2000 in September 1990, developed a new food label in 1991, and mounted strong programs to discourage cigarette smoking and other tobacco use. We also persuaded Congress to increase the annual research budget for NIH from $8 billion to more than $13 billion and increased gender and racial diversity among senior leaders at HHS. Our administration saw the appointment of Bernadine Healy, the first female director of the NIH; Antonia Novello, the first female and the first Hispanic surgeon general; Gwendolyn King, the first black female commissioner of the Social Security Administration; and William Toby, the first black administrator of the Health Care Financing Administration (now the Centers for Medicare and Medicaid Services). In 1993, I returned to Morehouse School of Medicine, serving as president until 2002.
As a result of the investment made in me through scholarships available in the 1950s, I was able to make some contributions to society that I otherwise could not have made. Other blacks in my generation could say the same. Mitchell Spellman, for instance, was founding president of Charles Drew School of Medicine in Los Angeles. Augustus White developed the residency program in orthopedic surgery at the Boston Beth Israel Hospital. Asa Yancey was the first black physician to serve as chief medical officer at Grady Hospital in Atlanta. And Claude Organ was the first black chair of surgery at a predominantly white school of medicine, Creighton University.
Today, graduating from medical school with a mere $500 of debt seems unimaginable. With high tuitions for medical school and limited scholarship dollars, it is now common for a medical student to accumulate debts of $150,000 to $250,000 by the time he or she graduates—and some owe even more.
Because of this reality, many college students, especially minority students from low-income families, are discouraged from ever applying to medical school, no matter how much they wish to do so.
According to a 2006 report from the Association of American Medical Colleges (AAMC), the median family income of entering medical students surveyed increased from $50,000 in 1987 to $100,000 in 2006. Even at Morehouse School of Medicine, in 1995 the mean family income of our entering students was $48,500, whereas the mean income for black families nationally at that time was less than $25,000. Our efforts to recruit and graduate students from low-income communities were not as successful as we had hoped they would be.
More recent data from the AAMC show that the median family income for all first-year medical students in the United States was $120,000 in 2014. The median income for black families in the same year was $35,398, according to the Census Bureau. At Morehouse School of Medicine, the median income of first-year medical students (who are mostly minorities) was $76,000 in 2014—less than the median family income for all US medical students but more than twice that of US black families in general.
When minority students give up their dream of becoming a doctor or other health professional, they are depriving themselves, depriving future patients who would benefit from having a more ethnically and racially diverse health care workforce, and depriving the nation of the contributions they could make to improving their lives, their community, and the country.
Another AAMC report, Altering the Course: Black Males in Medicine, released in August 2015, found that in 2014 there were 27 fewer black male first-year medical students than there had been in 1978, 36 years earlier—a striking observation.
Could having a minority physician help address the startling health disparities observed between whites and people of color? In 1996, Miriam Komaromy and colleagues documented in the New England Journal of Medicine that black and Latino physicians are three to five times more likely than white physicians to establish their offices in the ghetto or barrio, providing services to underserved populations. And a report from the Institute of Medicine in 2003, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, documented the conscious and unconscious biases that physicians often have against poor people. Changing the makeup of the health care workforce could change how care is delivered to vulnerable patients.
By allowing our educational system to evolve over the past few decades into one in which so many students in the health professions incur massive debts to support their education, we have also inadvertently created a national environment that has impaired access to health services for too many of our citizens. To more quickly reduce their educational debts, many newly trained health professionals are choosing higher-paying medical specialties instead of primary care for their careers. This has resulted in fewer family physicians, pediatricians, general internists, and psychiatrists than we need.
Given these realities, what can be done to make a career in the health professions more affordable and the health workforce more inclusive? I believe that the nation’s health profession schools must work diligently to avoid increasing tuitions further. This will require greater efforts by trustees, presidents, deans, and others in the schools to secure the needed funds from public and private sources to lessen the burden currently placed on health professions students and their families.
To stimulate and support the expansion of health professions education in the nation during the second half of the twentieth century and to avert a predicted shortage of health professionals, Congress enacted a number of bills in the 1960s and 1970s, collectively referred to as “health manpower” legislation. One of the initiatives developed at that time was the National Health Service Corps, which has a program that provides full tuition, covers the cost of books, and pays a living stipend to students who commit to practicing in a federally designated Health Professional Shortage Area for a specified number of years after completion of their postgraduate training. This program has been very effective in supporting future health professionals and placing them in medically underserved rural and urban areas. Unfortunately, it and other scholarship programs were drastically reduced in the 1980s. The American Recovery and Reinvestment Act of 2009 and the Affordable Care Act of 2010 include significant expansion of the National Health Service Corps scholarship program.
Today many health profession students rely extensively on student loan programs to support their years of training. In its August 2015 report, the AAMC stated that among the students graduating from a US medical school in 2014, mean educational debt was $178,000, 31.5 percent of the students had total debt of more than $200,000, and 41.9 percent of black male students had educational debt in excess of $200,000 (the report did not enumerate medical school debt for female students).
A number of novel programs and initiatives have been rolled out recently, aimed at making health profession education more affordable.
The Uniformed Services University of the Health Sciences, for instance, trains health professionals for careers in the military services. Because of their military commitment, the students obtain their education at no cost. Military scholarships are also provided to health profession students in many medical schools in return for their subsequent service as health professionals in the military for a defined period.
The Salina campus of the University of Kansas School of Medicine recruits students committed to becoming primary care physicians and working in medically underserved rural communities in Kansas. Through the medical school’s Kansas Bridging Plan, some of the students’ educational debts are forgiven in return for practicing in these underserved communities. Several states have similar programs for paying off educational debt, including Louisiana’s State Loan Repayment Program, intended to encourage primary care practitioners to serve in Health Professional Shortage Areas, and a Minnesota loan forgiveness program to encourage midlevel providers—physician assistants, nurse practitioners, certified nurse midwives, dental therapists, and others—to practice in rural areas.
Over the years, Morehouse School of Medicine has worked to secure funds for student support from public and private sources. As a result of their commitment to providing primary care and establishing their practices in federally designated medically underserved areas, 19 of the 24 students in the school’s first class received National Health Service Corps scholarships.
Policy makers should evaluate these and other strategies for financing health professionals’ education to determine whether they represent viable mechanisms for developing the health workforce needed by the nation, removing financial barriers for low- and middle-income students, assisting in the recruitment of physicians to medically underserved communities, and helping increase racial and ethnic diversity in the nation’s health professions. Such investments are necessary to ensure that the talents and skills required for our nation’s health system will be there in the future.
A fundamental requirement for a strong nation is a healthy population. For the United States, this means having sufficient numbers and sufficient diversity of health professionals in urban and rural communities across the country to promote healthy lifestyles and a culture of wellness, and to care for people who are afflicted by illness or injury. In the US health care system, greater racial and ethnic diversity is essential to providing high-quality care, promoting the cultural competence of health professionals, and developing the trust and confidence in health professionals needed by the people served by the system.
There are no longer separate waiting rooms for white and black patients in Blakely. We’ve made some progress. But if we do not invest sufficiently today in the education of young health professionals, although we now sit in the same room, we may have a very long wait.
Volume 35, Number 8. August 2016.
Bridging the Divide between Dental and Medical Care
A cancer patient delays needed dental care before radiation treatment and develops a painful, incurable disease.
Gayathri Subramanian
James sat quietly in our hospital’s urgent care dental clinic waiting for preradiation dental triage. He had just been diagnosed with tongue cancer and would soon undergo radiation therapy. Before treatment, he needed all invasive dental treatments completed because radiation can take an enormous toll on the oral cavity, weakening the teeth and jawbone.
James had been referred to us in 2013 from the radiation oncology department at University Hospital in Newark, New Jersey. Our urgent care dental clinic, also located at University Hospital, is affiliated with the Rutgers School of Dental Medicine, where I’m a faculty member. Hence, I oversee our dental residents as they treat patients who present to the urgent care clinic.
James was unemployed and in his early 50s, with little income and a tough life. He worked odd jobs now and then. He was a smoker—three packs a day for more than 30 years—and a drinker, consuming a few cans of beer a day. His broken-down teeth seemed to bear testimony to years of neglect. He had medical insurance but no dental coverage.
For many of the patients we treat at the urgent care clinic, daily life is such a struggle that brushing and flossing are a low priority. Other patients have never been properly educated about oral hygiene or have little familiarity with the health care system.
James had been aware of a slowly growing mass in his tongue but only sought care when he began having trouble swallowing and started experiencing severe pain that spread to his ear. His smoking and drinking had inevitably contributed to his developing cancer on the floor of his mouth and the base of his tongue. While not a candidate for surgery, he was recommended chemotherapy in conjunction with radiation therapy. Because the treatment would expose his oral structures—including the jawbone, salivary glands, and teeth—to radiation, a dental evaluation was prompted.
A resident examined James’s mouth. He was missing several teeth, and his remaining teeth had such advanced decay that conservative management with fillings or root canal treatment would no longer be feasible. He would need nearly 18 tooth extractions. We know that radiation treatment to the jaw can significantly undermine bone healing after teeth are extracted. In about 10 percent of patients who have teeth extracted following radiation (the exact incidence varies), the jawbone is unable to heal adequately and tends to die out, meaning it loses its viable cells and cannot repair or remodel itself anymore. The affected bone (usually in relation to the socket remaining after tooth extraction) loses the protective cover from overlying gum tissue, and because it remains exposed to the mouth, the risk of infections increases. In rare cases, the infections can cause the jaw to weaken and eventually fracture—an often painful disease called osteoradionecrosis, with no known cure. Osteoradionecrosis is known to occur most frequently during the first two years following completion of radiation therapy to the jaw. However, there is a lifelong risk that persists beyond the first two years.
There is no personalized risk-assessment tool to help gauge a patient’s risk for developing osteoradionecrosis, although patients who receive more than 50 grays (the unit used to measure radiation dosage) of radiation to the jaw are, in general, at higher risk. It is sometimes difficult to determine whether to recommend saving or extracting questionable teeth, although, in James’s case, we knew his situation could only worsen. Leaving him with a mouthful of condemned teeth that would likely deteriorate merely stacked the odds against him.
When I explained all of this to him, however, James declined dental care because he could not afford it. He said his teeth did not hurt him at that time; the debilitating pain he was experiencing was from his tumor, and he just wanted to get through his radiation treatment to ease his pain. We could not deny his decision. Because osteoradionecrosis is rare and poorly predictable, a mandatory dental referral and clearance prior to receiving radiation to the jaw is not yet the standard of care.
James completed his course of radiation and chemotherapy at University Hospital, and his subsequent scans showed no evidence of residual disease. He was restricted to a soft pureed diet that could be swallowed a little at a time and had to supplement his minimal intake with a feeding tube in his stomach. Then, nearly a year later, he arrived back at the dental clinic just as we feared, with rampant tooth deterioration and painful abscesses from his infected teeth where the infection had spread beyond the tips of the roots. In several areas, James had yellowish-white pus oozing from his gums from the infection. He was a stoic patient, not prone to showing emotion or complaining. But at this point, he could no longer suffer in silence.
“Doc, the pain is killing me,” James moaned while in the dental exam chair. He was ready to get his teeth extracted to relieve the pain.
James told us that he was scheduled to undergo an ear, nose, and throat procedure under general anesthesia within the next week to repair a small skin defect caused by his skin tissue being stretched and thinned postradiation, resulting in a perforation in his cheek. He begged us to perform the extractions at the same time so that he would not be awake for the procedures. Because time was of the essence, we agreed. James now had dental coverage along with his medical insurance, making it possible for him to afford the care he needed. We were able to go into the operating room right after the ear, nose, and throat specialist had repaired the perforation, and we were able to extract all of James’s remaining teeth.
For a few months, James seemed to be healing. But in time, a few of his dental extraction sites started to break down, exposing dead bone tissue on both sides of his lower jaw, establishing his diagnosis with osteoradionecrosis. He developed a fungal infection in his mouth—a fallout of an immune system compromised by chemotherapy and radiation treatment. No palliative measures, such as antibiotics, pain medication, antibacterial mouth rinses, or even hyperbaric oxygen therapy, had yet been proven effective, and we knew that James was in danger of losing his jaw to osteoradionecrosis.
In the meantime, James had become dependent on the pain medications he had relied on so heavily to help him through his cancer, its treatment, and now his unremitting pain. As he developed tolerance, the pain medications became increasingly ineffective. For a while, we saw him monthly to monitor his condition, but we couldn’t convince him to keep up with these visits, which so rarely seemed to bring him any relief. He comes less these days, maybe once or twice a year, hoping for news of a cure for his disease, but mostly afraid that we might condemn him to having the damaged section of his jaw surgically removed.
If James had had dental insurance alongside his medical insurance at the time he needed it, his story could have had a very different ending. He could have undergone his 18 tooth extractions well before his radiation treatment, at the same time that an ear, nose, and throat specialist performed his diagnostic biopsy, all under general anesthesia. His extraction sites could have healed by the time his biopsy result was available and his radiation therapy was being planned. Or, even better, James could have taken his oral health seriously enough to have regular health checkups and periodic dental care. His tongue cancer could have been diagnosed several months earlier, and his dentition could have been stable enough to withstand the radiation without the need for extractions.
Instead, by the time James finally obtained dental coverage, the risk of osteoradionecrosis was irreversibly established. By the time he was able to see us monthly, he had developed osteoradionecrosis, and we had nothing substantial to offer him to improve his condition. On the other hand, even if he’d had dental insurance coverage earlier, a plan’s annual cap on maximum expenses would likely have left him with significant financial burden.
When oral health is treated as if it were unrelated to overall health—as is the case in this country, where there is “medical” insurance and then there is “dental” insurance—the consequences can be dire. Today, there are more than 108 million people who have no dental insurance, according to the Health Resources and Services Administration. The United States spends more than $64 billion each year on oral health care, out of which only 4 percent is paid for by government programs. According to a 2000 surgeon general’s report, Oral Health in America, for every adult who has no medical insurance, there are three who have no dental insurance, even though it has been estimated that almost everyone experiences dental disease in his or her lifetime.
At the dental school where I teach, many of our patients have low incomes and lack dental insurance. Like James, most would benefit from timely access to oral health care. While dental benefits are required for children under both Medicaid and the Children’s Health Insurance Program, dental benefits for adults are optional. Traditional Medicare also does not cover most dental care. Under the Affordable Care Act (ACA), dental coverage for children is now an “essential health benefit.” Timely preventive and interventional oral health care for children likely will improve their oral health outcomes and help prevent oral diseases as they age.
However, while the ACA mandates individual health care coverage for all eligible US adults, it does not recognize dental coverage as an essential health benefit for adults, perpetuating the flawed perception of overall health as exclusive and independent of oral health.
The arguments against combining medical and dental benefits, whether valid or otherwise, are primarily financial. Secondarily, they reflect a mind-set that perceives oral health as an optional milestone to strive for.
This artificial divide is especially explicit in a hospital such as ours, which offers urgent oral health care services under the same roof as other health care services. Having traditional insurance allows patients access to health care services elsewhere in the building, but once seated in the dental chair facing a dental emergency, patients often are told that their treatment must be paid for out of pocket.
It has been 16 years since the surgeon general acknowledged the silent epidemic of oral diseases affecting our most vulnerable citizens: poor children, the elderly, and members of racial and ethnic minority groups. Yet poor oral health still disproportionately affects low-income adults, particularly those from racial and ethnic minority groups. It is time that we erased these disparities, particularly for patients with life-threatening illnesses, for whom dental care and medical care are intertwined. Mandating that medical insurance cover essential dental treatments such as tooth extractions, fillings, and root canal procedures, particularly for cancer patients such as James, whose dental health and overall health are so closely related, might be an essential first step. We cannot afford to walk away from our obligation to strive for oral health equity—an integral part of achieving overall health equity—no matter the financial implications.
Volume 35, Number 12. December 2016.
Editor’s Note: The patient’s name in this article has been changed to protect his privacy.
In Rural Towns, Immigrant Doctors Fill a Critical Need
Immigrant doctors have helped fill physician shortages for years. In the current political climate, are they welcome?
Yasmin Sokkar Harker
Last summer, a headline on Facebook caught my eye. “We Asked Trump Voters ‘When Did America Stop Being Great?’ ” it began. “Their Answers Will Amaze You.” The link led to a video of interviews from the America First Unity Rally in Cleveland, Ohio, for which supporters of then presidential candidate Donald Trump had gathered. When did America stop being great? I paused.
At that time, I was still puzzled by the ascendance of Trump as a presidential candidate, and like many other people, I didn’t really believe he could win. I would probably have scrolled past the article had it not been for my connection to Cleveland. Cleveland was my birthplace, and although I spent most of my childhood in rural Ohio, I was drawn back to Cleveland for college and then law school.
When did America stop being great? I looked at the grassy lawn that stretched out beside the Cuyahoga River in the video. I looked at the flags, the red caps, and the signs. I clicked play. The first few people responded with vague sentiments: that special-interest groups were “getting their way” and being heard while “the mainstream” was being overlooked, and that Trump was giving “us” (those overlooked individuals) a voice. Then a woman with short brown hair looked directly into the camera and said something unexpected: “I would say about thirty years ago I started noticing … I’m in the medical field, and things like … all the doctors coming in were coming from foreign countries.”
When did America stop being great? When the doctors from foreign countries started coming. When my parents arrived.
I froze. I felt like I had been ambushed. I stopped the video. I replayed it. Doctors from foreign countries. I replayed it again, a small wound in my heart slowly expanding.
Over the next few months, I sought that video over and over, as if by rewatching it, I could get some answers from this woman. Who was she? She said she was in the medical field—had she worked alongside people like my parents? How did she treat them? Did she know their stories? And why—of all the things she could have chosen to represent when America stopped being great—did she choose physicians?
The story of my family is the story of those doctors from foreign countries. I’ve always thought of it as a wonderful story.
My parents came from their respective countries—my mother from the Philippines and my father from Egypt—to fill a physician shortage that had plagued the United States for decades. They met as residents in a Cleveland hospital in the early 1970s. My mother had been in the country for a few years already and had just purchased her first car, a Mercury Cougar. My father, having just arrived, wanted to learn how to drive. I’m not sure how successful the driving lessons were, but my parents were married shortly afterward. I arrived a year later. When I was three years old, we moved to a small town about 50 miles from Cleveland, where they would both practice for over 30 years.
Our new home was within walking distance of a truck stop on a major interstate. We had several gas stations, car washes, a diner, a McDonald’s, and eventually a Wendy’s. Behind our house was a wooded area and a creek in which you could sometimes spot turtles and tadpoles. If you continued walking through the woods—past the creek and up a hill—you would emerge into a parking lot behind the Howard Johnson’s restaurant and motor lodge. We lived about seven miles from the clinic and the hospital where my parents went to work almost every day for most of my life.
I always wondered: How did I, the child of immigrants from different ends of the globe, grow up where I did? I read about the immigrant enclaves of large cities, about mass immigration to the Chinatowns, the Little Manilas, and Little Indias of Los Angeles, New York, and San Francisco. How did we end up in rural Ohio?
I understand now that the story of my childhood and the story of my life have been shaped by much larger forces: by health care dynamics that brought physicians like my parents to people who badly needed them.
The physicians who cared for the people of my town were almost all immigrants. They were referred to as foreign medical graduates, or FMGs for short. This cadre of FMGs had originated all over the globe: Along with my parents, our town’s physicians came from Bulgaria, India, Iran, Jordan, Slovenia, and Taiwan. The on-call schedule that was tacked up on our refrigerator read like a United Nations roll call: Cheng, Syed, Manocher, and so on.
The census data from both 1980 and 1990 show that Ashtabula County, Ohio, in which I spent most of my life, was 95 percent white. For the most part, minorities and immigrants did not have a presence in our rural town. The statistics are consistent with my memories. I don’t remember knowing or seeing any people of color or immigrants until much later in my life, with one big exception: my parents and their colleagues.
Many, if not all, of these physicians had left their homes and families behind to build a life far away from everything they knew. I’m sure it was lonely for many of them, but they found friendship in each other. My memories are filled with backyard barbeques and birthday parties. I learned to eat biriyani, rice noodles, and almond jelly alongside hamburgers, potato chips, and ice-cream cake. We were more than statistics about immigrant success: we were creating our lives and writing our own stories.
For decades my parents tended to the people of the town with tenderness and tenacity. Because there weren’t many physicians in town, they were in demand. They were tethered to the hospital through telephones and pagers. Our weekend excursions to the mall or the movies were often cut short by the sound of a pager going off. Our phone rang regularly at three or four a.m., and the calls often ended with one of my parents getting dressed and driving off into the night.
For many years my mother worked a 12-hour emergency room shift on Wednesdays. On those days my father would bring my sister and me to the hospital before we went home for dinner. Sometimes my mother would be waiting for us in the on-call room. It was a tiny space located next to the morgue, furnished with a vinyl armchair and narrow bed where the ER doctor could watch television or take a nap while waiting to spring into action. Other times she would be in the emergency room itself, and if I peered past the reception desk, I could see her scurrying to or from a patient’s bed, a white coat enveloping her small frame and a stethoscope draped around her neck. I always felt a swell of pride when I saw her like this. I knew that in that moment, she was saving a life.
What I didn’t realize at the time was that she also was filling a critical need for physicians in our small, rural town—a need that is just as critical today.
Like the physicians who worked with my parents 40 years ago, foreign-born physicians today come from a wide array of countries. The top five countries sending physicians to the United States are India, China, the Philippines, Korea, and Pakistan. Across the United States, patients rely on immigrant doctors to prescribe their medications, deliver their babies, perform their surgeries, and ease their pain.
Yet in the current political climate, I worry for those physicians. In January 2017, President Trump signed an executive order barring entry into the United States for the citizens of Iran, Iraq, Libya, Somalia, Sudan, Syria, and Yemen, though the ban met legal opposition. In March, a new executive order barred travel from six predominantly Muslim countries for 90 days. Despite legal challenges, the order went into effect that June. In September, the president unveiled new restrictions on travel to this country, including “enhanced vetting,” and in October the Supreme Court dismissed a challenge to the travel ban as moot because of the expiration of the 120-day ban. Though ostensibly meant to make our country safer, these actions have an effect on our nation’s health care system as well.
An analysis from the Immigrant Doctors Project found that physicians from the six countries in President Trump’s second travel ban provide approximately 2.3 million appointments each year in areas with physician shortages. It also found that 94 percent of Americans live in a community with at least one physician from one of the countries affected by the March travel ban.
Iran and Syria, two of the countries targeted in all three versions of the travel ban, contribute the sixth- and seventh-largest numbers of immigrant physicians in the United States, respectively, with nearly 4,000 physicians having come from Iran and about 3,800 from Syria—according to data from the American Medical Association (AMA).
Many of those physicians work in areas experiencing critical health care shortages, particularly in the Rust Belt (the area of the Midwest that once held thriving coal and steel industries) and Appalachia. It is estimated that today about 10,000 foreign-born doctors work in rural, isolated areas. AMA data suggest that foreign-born doctors are more likely to specialize in primary care—a specialty prone to workforce shortages—and are more likely to serve poor patients on Medicaid. For example, according to statistics from the Alabama Department of Health, in the most medically underserved areas of Alabama, Syrian doctors are the fourth-largest group of foreign-born doctors—behind Indian, Pakistani, and Filipino doctors.
In the months since the travel bans, I have sought such physicians’ stories. I read about Suha Abushamma, a Sudanese resident at Cleveland Clinic who, after a trip abroad, returned to the United States only to be turned away; Hooman Parsi, an oncologist scheduled to work in rural California, who remained trapped in Iran amid confusion over the travel ban; and Abdelghani el Rafei, a Syrian medical resident in Minnesota, who could not travel home to see his family. I read stories of confusion, fear, and uncertainty. These physicians’ stories could have been like my family’s story, but they were cut short before they could truly begin.
In addition to the short-term effects of blocking doctors from entering the United States, the travel bans may be producing a chilling effect, discouraging immigrant physicians from practicing in the US health care system.
For example, as a result of the travel ban, Khaled Almilaji, a Syrian physician, left the United States for Canada. There, he was awarded that country’s Meritorious Service Medal for his work with an international relief organization. In another case, the family of Ali Fadhil, an Iraqi doctor who had worked in rural Georgia for several years, started to face harassment in the wake of President Trump’s nativist rhetoric. After the travel ban was issued, Dr. Fadhil decided to leave rural America for California, stating that “in the end, this area is just not a place for me to live.”
More systematically, some residency programs—such as the one at Einstein Medical Center in North Philadelphia—are now reluctant to match candidates from banned countries, according to reporting by NPR. This reduces the pool of talented young physicians who will come to the United States in the future.
For me, this is a shame. Immigrant doctors have never been a sign that America stopped being great. From the 1970s through the present, they have helped America achieve its greatness.
It is an irony that the areas where immigrant doctors are most needed—the Rust Belt, in particular—are also areas with the strongest support for the president. In the 2016 election, Ashtabula County, my home county, voted 57 percent for Donald Trump, despite having gone for Barack Obama in the two prior elections. My hometown, Geneva Township, went 60 percent for Trump. Of course, there are many reasons why Trump’s campaign promises may have appealed to voters there. A floundering economy, lack of opportunities, drug use, and crime are among the problems rural voters from Ashtabula County deal with. But in the context of health care, President Trump’s travel bans don’t do my hometown any favors.
Shortly after the first travel ban was signed last January, the AMA sent a letter to the Department of Homeland Security urging officials there not to restrict physicians who have received visas to train, practice, or attend conferences in the United States. In the same letter it affirmed its commitment to students and physicians with Deferred Action for Childhood Arrivals (DACA) status, stating that DACA could introduce 5,400 physicians into our country.
In September the Association of American Medical Colleges (AAMC), joined by 30 other medical associations, filed an amicus brief challenging President Trump’s second incarnation of the travel ban. The AAMC argued that the travel ban would exacerbate the nation’s health professional workforce shortages, jeopardize progress in medical innovation, and inhibit global research and public health collaborations. The AAMC concluded that the travel ban thus undermines America’s ability to avert and respond to health-related national security threats.
Following the third version of the travel ban, the AAMC concluded in a statement that although the revision “eased restrictions” for some health care workers, “they could still face barriers to entry.”
I cannot predict what will happen next with our immigration laws. But I do know it behooves our country to oppose nativist and anti-immigrant laws in the future. Indeed, we should support laws—such as the recently introduced Conrad State 30 and Physician Access Reauthorization Act—that encourage immigration and bring immigrant doctors to the regions where they are needed most. The Conrad 30 program allows immigrant doctors to stay in the country in exchange for practicing in underserved areas for at least three years. This bipartisan bill, introduced in April 2017, would renew the program until 2021. The bill has the support of the AMA.
In one hopeful sign, in June the US Citizenship and Immigration Services, a division of the Department of Homeland Security, resumed premium processing of H-1B visas for medical doctors. Such processing for immigrant doctors facilitates the entry of much-needed physicians into our workforce. This is a small step, but a positive one.
My parents are now retired and live near me in New York City. We haven’t been back to Ashtabula County for over a decade. The county is still, according to the most recent census, 90 percent white. I am often curious about immigrant families who came after us and about all of those who crossed oceans to settle in the small towns that dot the Rust Belt. What are their lives like today?
The small-town hospital where my parents worked has since been subsumed by a much larger medical conglomerate. But as I scan the physician directory, I see young, smiling faces from medical schools in India, Brazil, and Egypt. I think about them, and I wonder if they plan to stay. I hope so.
Volume 37, Number 1. January 2018.
An Uninsured Immigrant Delays Needed Care
A physician reflects on the bitter reality of delayed and denied care that her immigrant patient faced more than a decade ago and that many immigrants still face today.
Cheryl Bettigole
In about 2001, long before the Affordable Care Act (ACA) was passed, I took care of a patient I’ll never forget. All doctors have them. I was a year and a half out of my family medicine residency, practicing at a safety-net clinic in Philadelphia, Pennsylvania. It was my day to cover the walk-in area of the clinic, where we took care of established patients who were sick and those new to the clinic who couldn’t wait the two or three months it took (at the time) for a scheduled appointment. A middle-aged man, soft-spoken and with an anxious look on his face, waited for me in the exam room. He was slightly plump, neatly dressed in a button-down shirt, sweater, and trousers, and he greeted me with great politeness as I entered the room. He was accompanied by one of the clinic’s Spanish interpreters, an older woman with a gentle presence and the too-rare ability to explain to us not only our patients’ words but also their cultural context.
It was the patient’s first visit to our clinic and, in fact, his first visit to any doctor since his arrival in the United States 15 years earlier as a legal immigrant. He sat in a patched vinyl chair facing me, with the interpreter perched near him on the end of the exam table, and explained that he was concerned about a pain in his side and about some weight he had lost without really trying. “But I’ve been taking a supplement,” he told me in Spanish, the interpreter translating in step, “and I think maybe that’s what’s causing it.” He looked up at me hopefully, as if willing me to echo his words.
“How much weight have you lost?” I asked him.
“Maybe forty pounds or so,” he answered. “But a supplement could do that, couldn’t it?”
I began a physical exam. It didn’t take long for my fingers to find the grapefruit-size mass in the right side of his abdomen. He winced slightly as I felt around the mass’s firm edges. I found it hard to believe that he had failed to notice it himself, and I could see from his guarded expression that he was not surprised by my discovery. I asked him how long it had been there.
“A few months,” he said. “Maybe a year, year and a half. I didn’t have the money to pay for a doctor.”
Like many of the patients I have seen over the years, the man had delayed seeking care in part because he had not yet learned about low-cost safety-net clinics such as ours and assumed that a private physician was his only option. Even if he had known about us earlier, our clinic had a waiting time of several months for new patients and could hardly keep up with the existing demand for its services.
Our clinic had a contracted referral system that allowed us to obtain necessary imaging studies for uninsured patients without charging them; with approval from our clinical director, the clinic could cover the cost of the studies at our local hospital. We were fortunate, and rare, in this regard. With the interpreter’s help, I explained to my patient that I wanted him to have an ultrasound done to help me understand what the mass was, and then I gave him a referral for the study to be done at the hospital’s radiology department, which would send me the report.
As I sent him out, I hoped I was wrong about his diagnosis. There are benign abdominal masses but few that cause weight loss such as he had described. About a week later, I received the results of my patient’s ultrasound: they indicated stage IV renal cell carcinoma, a type of very advanced kidney cancer. I called my patient and arranged for him to see a nephrologist at a local hospital, who sent me a report a few days after the visit. The nephrologist confirmed that the tumor was inoperable. His report ended simply, “Advised comfort measures.”
With a feeling of dread, I asked my patient to come see me to discuss the report. We talked about his diagnosis and about what it meant to him. He spoke with his shoulders bowed and his words coming slowly. “I run my own business. I’ve worked hard and saved what I could to build a life here for my family, for my two daughters. When I first noticed the pain, I thought about seeing a doctor, but doctors are expensive. I didn’t want to spend everything I had worked for on doctor and hospital bills.”
Stage IV renal cell carcinoma is a diagnosis I’ve never seen before or since. Although there is no routine screening test for renal cell carcinoma, the majority of patients are diagnosed at earlier stages, and the prognosis is dramatically different depending on the stage at diagnosis. For those diagnosed at stage I (in which tumors are often found incidentally because of an imaging scan done for another reason), five-year survival is more than 80 percent. The survival rate drops to 74 percent at stage II, in which tumors have grown to more than seven centimeters but remain confined to the kidney. The survival rate falls to 53 percent at stage III (the cancer has spread locally) and then plummets to 8 percent at stage IV (there is distant metastasis). Had my patient sought care when he first noticed symptoms instead of waiting for months, he would have had a chance at surviving.
As it was, since the specialist had made it clear there were no effective curative treatment options to offer, I set about trying to make my patient’s last few months as comfortable as possible. Ordinarily, I would have referred him to one of the many high-quality hospice programs available in Philadelphia. A program such as that could have monitored his need for pain medication, helped with any home care requirements, and offered emotional support for his family. But my patient was uninsured, and my multiple phone calls failed to find a hospice provider that would accept an uninsured patient.
“I’d like to refer a patient,” I said to each of the cheerful voices that answered my calls. “But … he has no insurance. Can you accept him?” I mentioned that we were trying to get him covered under Medicaid. Some simply said no; others suggested different hospice programs that they thought might accept an uninsured patient (although they never did); and most suggested that I call back once my patient had insurance. When I tried to help him obtain Medicaid coverage, we hit roadblocks there as well. I filled out the application for him, and he took it to the welfare office, with “metastatic renal carcinoma” written in capital letters across the top to make sure it couldn’t be missed. But he was told that his savings put him over the financial threshold for Medicaid and that he was too young to qualify for Medicare. I learned years later that there were programs under which he might have qualified for Medicaid, but the caseworker didn’t mention any other options. Given gaps in training, the caseworker might not have known that they existed any more than I did at the time.
In the end, all I could offer was medication for his pain, a service that hospice would ordinarily have provided, and my support to him and to his family. A few months after his first visit to my clinic, at what turned out to be his last visit in the office, I gave his daughter my pager number so that she could call if his pain medication stopped working. I still remember standing in my living room one night a few days before he died, phone held in one hand, using the other to page through reference books to find instructions on how to adjust the dose of morphine for cancer pain. At the same time, I couldn’t help but wonder how this could possibly be the best I could do for my patient, considering the wealth of health care resources my city has to offer. If my patient had had insurance, a trained hospice team and palliative care expert could have done far more to ease his final days than I could manage with my lack of experience or specialized training.
After my patient’s death, his daughter called and thanked me profusely for my efforts, but I was painfully aware of all the ways in which I, along with our health care system, had failed him. Her gratitude made me feel like a fraud, too aware of what would have been different if I had known more, both about end-of-life care and about how to advocate within the convoluted world of Medicaid eligibility.
In the years that have passed since my patient’s death, I’ve come to better understand why so many of my immigrant patients come into the health care system too late to get the help that they need. The central fact that immigrants to this country know about our health system, if they know nothing else, is that it is hugely expensive for those without health insurance. Prior to the ACA, small businessmen such as my patient often couldn’t afford to buy their own coverage. Many of my other immigrant patients work in service industries that rarely provide insurance to their employees. With the advent of the ACA, many who couldn’t previously afford insurance can purchase coverage in the exchanges or (in some states) may qualify for Medicaid. Yet millions of undocumented workers remain barred from these programs, and many have no way of becoming insured. What’s more, millions of legal immigrants are barred from Medicaid until they have been residents for five years. During this gap period, they may suffer serious medical problems and, despite their legal status, lack access to care. State laws make exceptions for some immigrants, such as pregnant women and children, but the rules vary from state to state.
In its series “Paying Till It Hurts,” the New York Times has done much to publicize the fact that our health care system charges the uninsured much more than those with coverage, garnishing wages and working out payment arrangements that can last for years and can tip struggling families into poverty. As other groups have gained coverage through the ACA, immigrants and their children make up an increasing and disproportionate percentage of those who remain uninsured and at risk from these extraordinarily high charges, according to economist Eric Seiber, among other scholars. Word travels quickly in immigrant communities, and my patients are well aware of this risk.
It is true that the ACA has brought real benefits to immigrants, increasing the number of people able to obtain insurance, both via the exchanges and, in participating states, via the Medicaid expansion. But in the end, I fear that many immigrants, both those here legally and those who are undocumented, may still die the same early, painful deaths our health system could not prevent more than 10 years ago.
In 15 years working at safety-net clinics with large immigrant populations from all over the world, both before and after the ACA, I have too often heard similar stories of care that was delayed or denied to uninsured immigrant patients: The woman who felt a lump in her breast and ignored it as it grew month after month, until finally her sister-in-law found out and brought her to the clinic. She was diagnosed with stage III breast cancer at age 35. Or the young woman who broke her ankle and waited four months in exquisite pain before finally finding her way to our doors. The man whose hypertension was diagnosed only after his kidneys failed because he lacked access to basic health care that would have identified his condition sooner. Or the paraplegic man who managed on his own for decades without medical care, using an ancient wheelchair and dressing his decubitus ulcers with the help of family members, until a pressure sore that went all the way down to the bone of his sacrum finally led him to our clinic.
These stories should not come from a major US city that is home to some of the finest health care institutions in the country. They should not happen in a civilized society. But they did. Many of these patients would have been eligible for “emergency Medicaid,” which covers treatment for life-threatening conditions for noncitizens and legal immigrants who are subject to the five-year bar. But through a combination of language and literacy barriers, lack of familiarity with the US health care system, the administrative complexity of the application system, and long waiting times for appointments at safety-net clinics, they remained uninsured and without care.
Over the years my colleagues and I have learned how to navigate these systems for our patients, when and how to ask for help, and who to call for urgent cases. I’ve learned who to call when, as happens so often, my seemingly eligible patients are denied coverage through a Byzantine bureaucratic process. Often, they’re not actually told no, but their application is repeatedly lost or labeled as incomplete, and their phone calls go unreturned by overwhelmed caseworkers who sometimes lack the training to understand immigrants’ complex situations.
With this knowledge, built up over more than a decade, I can often get critical help to individual patients. Other times, however, it is too late. I am troubled that we continue to allow labyrinthine systems of health care access for vulnerable patients to deny them the help they need and for which they are eligible.
In the early days of the debates around what became the ACA, a colleague asked if I would be willing to testify about the need for affordable health insurance in our state. My patient with renal cell carcinoma was one of the reasons I said yes. There is something truly bitter about a dying patient who cannot even access hospice care. The patients who came into my care too late have inspired me to join with many colleagues to write and speak out for expanded access to care and to dispel the mistaken notion that all physicians opposed the law. Given the political atmosphere of the time, the president and many legislators made a calculated decision not to propose universal access, nor to touch the “hot-button issue” of health care coverage for immigrants. The law that passed was a vast improvement on the health care status quo, but many immigrants were left out.
One-quarter of US children have at least one immigrant parent, and almost all of these children are citizens. These children and others who live in mixed-status families (that is, families in which one or more members are undocumented) are at particularly high risk of remaining uninsured. The ACA increases funding for community health centers such as the ones I have worked in, helping to improve access to primary care for many communities. But safety-net clinics are designed to provide primary care and lack the infrastructure and resources to provide more complex care, such as chemotherapy, surgery, fracture care, or hospice services. The costs of chemotherapy alone often run into the tens of thousands of dollars—far beyond the range of these clinics or the average patient without health insurance. Community health centers and safety-net hospitals are essential for immigrant patients, but they are no substitute for health insurance coverage. The belief that these patients can get the care they need through an emergency department or other safety-net institution, which rarely offer cancer treatment or nonemergency surgery to those without health insurance, is simply not true.
According to the Urban Institute, many immigrants do not understand the rules of Medicaid eligibility and fear possible deportation of undocumented family members if they apply. The eligibility rules are complex: they depend on the details of an individual’s immigration status, duration of residence in the country, age, sex, health status, and income, and they vary from state to state. Immigrants with limited English proficiency need additional assistance with the process and are at particular risk of remaining uninsured even when eligible. Other challenges include rising caseloads among workers who process the applications, complex applications, and requests for obscure and hard-to-find information such as the Social Security numbers of applicants’ parents (even though this is not actually required). And even if they do finally get covered, beneficiaries are typically required to recertify every 6 to 12 months. These factors lead to substantially lower enrollment in Medicaid among eligible immigrants than the US population as a whole, researchers have found.
Linkages to community-based organizations, including those that provide free legal assistance and access to people who can act as trusted navigators and information sources, can make a real difference for immigrant communities. Ultimately, however, we need to offer affordable coverage options to all immigrants and to communicate effectively with these communities about how to obtain the coverage they need.
In 2001, after my patient’s death from renal cell carcinoma, I feared that our health care system was creating an economic trap for immigrants in which they could work their whole lives to build financial security for their families only to face a choice between turning every cent over to the health care system or dying an early, preventable death. Now, in 2015, having worked like so many others to create a better system with improved access to decent-quality, affordable care, I am all too aware that not enough has changed for my immigrant patients. Too many remain systematically excluded from access to the health care they need. And the soaring costs of health care for the uninsured still make it all too likely that the next time an immigrant patient feels a mass in his belly and worries, he will think about seeing a doctor and, with a heavy sigh, decide to wait.
Volume 34, Number 12. December 2015.