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Blinded by Bureaucracy

Useful health access is about more than money

The New Physician July-August 2007
I’d just finished a routine Pap smear and pelvic exam at a reproductive health clinic in Northern Thailand when a nurse came to the back room and asked for me. “I know you mostly see patients with HIV at the hospital,” she said, “and there’s a case here for HIV counseling that I’d like you to talk to with me. You have to see her eyes.”

I was surprised and flattered that one of the nurses thought I might be able to help. A rising fourth-year, I had completed a year of clinical training in the United States and was spending one abroad focusing on clinical research at Chiang Mai University Hospital. I also wanted more community involvement, which brought me to the reproductive health clinic.

Located in a nondescript building, the clinic provided affordable examinations, contraception, STD screening, HIV testing or medical abortions to about 50 patients a day. Although I was mostly put to work doing Pap and pelvic exams, I occasionally participated in HIV and abortion counseling. In these capacities, I saw many women wandering aimlessly through a health-care system intended to benefit them, but often leaving them bewildered and isolated.

As you would expect in a primary care outpatient setting, most of the patients I saw were not very sick. Unfortunately, the girl the nurse wanted me to see was an exception. I was immediately taken aback by her small stature; she looked much younger than her stated age of 16. She was blind in one eye and had a crusted eye patch over the other. Her older sister, who was about 20, did the talking; the patient deferred completely to the sister, and clung to her.

Their parents had both passed away, likely due to HIV/AIDS, and the girl had been transferred to the local university hospital from their home city of Chiang Rai when she began to go blind. Hospitalized for almost a month, she received surgery and medications for her eye problems, caused by herpes zoster and cytomegalovirus infections. The doctors also found abscesses in one ear. They told the older sister—now head of the family—that the girl had tested positive for HIV.

The sister told us this was the first time they’d known about the girl’s HIV status, and wanted the reproductive health clinic to retest her just to be sure. They were frustrated with the large university hospital, and had missed an appointment the previous day with HIV doctors because they had been charged for the hospital’s care after an earlier visit and were afraid they would have to pay out of pocket again.

Thailand’s national health-care system should not have required them to pay for any care due to their status as orphans, and I shared the sisters’ frustration. Without an advocate, or simply someone to explain the system to them, they had gotten lost in the health-care bureaucracy.

The nurse and I talked to the sisters about their next step and how to transfer care back to Chiang Rai. I had served as an HIV counselor in Bangkok prior to medical school, so I spoke to them about what having HIV meant, answered their questions and stressed the importance of taking antiretroviral therapy (ARV) consistently. After an hour-long conversation, the older sister thanked us for our help, said she understood HIV much better and led her younger sister, who could barely see shadows, out of the clinic.

Later, the nurse told me she would follow up with the older sister and try to find out exactly what happened later at the hospital. Though this made me feel better, their visit evoked strong emotions for me. The Thai government provides ARV treatment without cost to everyone who qualifies clinically. This girl—and her family—was entitled to services, including counseling and medication, that she did not appear to have received.

Sometimes it’s difficult to talk about HIV/AIDS with minors, but I found it hard to believe that nobody had sat down with this patient to discuss the disease, treatment or the transferal of care when I knew these services—and dedicated people to provide them—were available at the hospital.

It was, however, not a total failure of the system. Had the sisters not skipped their appointment the day before, they may have learned more then.

Still, it’s easy to see how the sisters didn’t understand the importance of that visit—one more turn in the maze of a patient’s care. For lost patients like these, so much work remains, not just in treating diseases like HIV, but in educating all of those affected, including concerned family members.

Although I rarely see people as sick as that one patient, her blindness and hesitancy reminded me of many patients I saw at the clinic on other days. These are the patients who are generally healthy, but have come to the clinic to seek an abortion. They are often young, and accompanied by unhappy parents, close friends and, at times, their partner in the pregnancy. They are not in touch with their own bodies and do not feel comfortable talking about reproductive health, contraception or risky sexual behavior. They rarely ask questions, and the clinic staff do not ask many of their own.

Abortions are illegal in Thailand under current law, unless the mother’s life is in danger. Many women attempt to self-induce abortions using readily available over-the-counter emergency contraception, or paying unqualified people to perform a procedure. A few clinics across the country provide safe abortions by a certified OB-Gyn, albeit illegally.

When I started helping out at the clinic, I asked the director if I could look at some records, wondering about the demographics of the women who had sought abortions there. He was thrilled that someone was going to look at the data, as no one had the time to do it before.

Unfortunately, patient data sheets were destroyed every six months to preserve confidentiality and protect the clinic, and what records remained were mostly incomplete and didn’t capture a lot of useful information. With the director’s encouragement, I wrote up a new form for the nurses to implement among patients seeking abortions at the clinic. The data collected would then be used to identify the clinic’s target population and help the clinic determine priorities, such as post-abortion contraception. Although it’s not what I had originally envisioned as clinical research, it was an important and necessary part of helping a community-based clinic identify the population it’s treating and the issues that population faces.

For patients like the two sisters and other bewildered young women who turn to the clinic, the need for education and health literacy stands out to me, especially in a complex, if potentially beneficial, health-care system.

As they left the clinic, the younger sister seemed so small, as if she was trying not to look like a burden. The older sister tried to provide comfort as she guided the sightless girl out of the clinic’s open entranceway, hugging her and whispering in her good ear.
Tanyaporn Wansom, a fourth-year at the University of Michigan Medical School, recently returned from a yearlong Fogarty/ Ellison fellowship in Chiang Mai, Thailand.