Maria sat next to her mother in the cramped clinic room. The family resemblance was unmistakable—rich black hair with delicate curls, deep brown eyes, thin mouth. Maria was sturdy, her mother more willowy. But a second glance registered something subtle, something jarring and wrong, about Maria. Her Mexican complexion was a shade darker than her mother’s, the apples of her cheeks a deep mauve blush. A quick test revealed the cause—low blood oxygen.
Maria and her mother came to my free clinic in south central Los Angeles that afternoon in hopes that I might write her a note excusing her from gym class. Now 14 years old, Maria suffers from primary pulmonary hypertension, a rare condition in which the blood vessels of the lungs constrict, thereby increasing the pressure. Her heart struggles to pump enough blood through the pressurized lungs to supply the body with oxygen. When I asked how she tolerates exercise, she put her hands to her throat and giggled a little, as if shocked that I could ask something so obvious. “Me asfixio”—I suffocate. Gym class could be deadly.
She has been in the United States for the past seven months but has been turned away for care from several facilities, including a major pediatric center in Los Angeles, for the sole reason that she cannot pay.
Maria was composed during the visit, but her mother was tearful as we discussed the severity of her disease. I saw in Maria’s chart that she had been referred to the free county health system for cardiology care months earlier, but as far as she or I could tell, she remained on the waiting list for an appointment. While treatment of pulmonary hypertension can run to hundreds of thousands of dollars, an intervention as simple and inexpensive as oxygen could significantly improve Maria’s quality of life. So, we began again the search for care.
Initially, I was hopeful—after some phone calls, I found a cardiologist who assured me that she could receive care at the same pediatric facility that initially refused her. I even congratulated myself for taking the time to pick up the phone. “I’d like to schedule her into my clinic within the next two weeks. I’ll take it to our social worker to see how we can get her into our system,” the cardiologist said.
But, two weeks quickly became a month without a response, and when I called the financial counselor at the cardiology office, I learned that Maria had been turned down again because of her lack of insurance. All children in California are eligible for 30 days of primary care coverage, including specialty appointments, until their case can be evaluated. Maria had already been evaluated and found ineligible for general Medicaid coverage. Instead, like many other ineligible children, she had qualified for “de emergencia”—emergency only. These children are forced into the most expensive sector of medical care. I reasoned that oxygen could potentially be considered an emergency treatment, but when I finally made it through the Medi-Cal phone tree, the most the benefits coordinator could offer was, “She needs to get legal so she can qualify for actual medical insurance.”
My optimism faded, and I now began to worry that I would have to send Maria back to Mexico for treatment. Meanwhile, she and her mother returned every few weeks. As each week without resolution passed, I grew more frustrated. Yet she and her mother thanked me effusively at each visit, grateful even that I had taken an interest after they had foundered for months in a system they could not make sense of.
Finally, I had two strokes of luck. First, I met another Mexican child in the clinic with chronic medical problems who had all the specialty visits he needed, even though his healthier brother and his sister had qualified for nothing more than de emergencia. “I can’t explain it,” his mother said when I asked how this was possible. “I’m afraid to ask questions.”
I called California Children’s Services and learned that, indeed, children with nothing more than de emergencia could qualify for specialty services, and we began the application process for Maria. The same week, the pediatric cardiologist called me with the name of another cardiologist working in the free county system. She had already discussed Maria with him, and when I called, he readily overbooked Maria into his clinic the following week. Maria may still never qualify for the heart transplant she needs, but at last she has her foot in the door.
The current Presidential primary contest draws national attention to the millions of Americans who lack adequate medical care. President Bush recently vetoed an expansion of the State Children’s Health Insurance Program, and this week, Governor Schwarzenegger announced proposed steep cuts to the Medi-Cal program. These changes will dramatically affect the reimbursement at my clinic, where we already face increasing pressure to see more patients in order to stay afloat. These programs do not even begin to address the plight of undocumented residents, like Maria, who swell the ranks of our uninsured. With the upcoming election, we, as a nation, have the opportunity to define our hopes for the future. Will we determine that access to health care is a right, or a privilege?
Ellen Rothman, HMS ’98, practices at a community health center in Los Angeles.
The names used in this column are pseudonyms, and the opinions expressed are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University.
