On Thanksgiving 1997, I remember curiously staring at my uncle as he swallowed, one by one, what my mother told me were vitamins. I didn’t know until about eight years later that my uncle had AIDS. Now, at 57-years-old, my uncle is considered a long-term survivor.
Unfortunately, there is little evidence and study depicting the consequences of HIV/AIDS medication for long-term survivors, a main reason being that there aren’t many left. The Journal of Antimicrobial Chemotherapy references a recent study estimating that, “the median remaining lifetime of a newly diagnosed 25-year-old HIV-infected individual to be 39 years.” My uncle surpassed this estimate about 15 years ago. But now what?
He has a severe psychiatric disorder because of the combination of medications he is taking, and continues to check himself in and out of hospitals approximately every two weeks. He lives by himself because he can, legally. However, once he returns home he stops taking his medication and is unresponsive to phone calls and visitors, including his social worker. Although the threshold for Assertive Community Treatment (ACT) services is three or more psychiatric hospitalizations within a 12-month period, such outpatient programs do little to aid patients with severe mental illness. My uncle was given this service, but because of his psychiatric problems he will not let anyone into his home; therefore, he is not receiving the care he needs. In 2002, mental illness cost about $300 billion in the United States alone, according to the Diagnostic and Statistical Manual of Mental Disorders Report. Ultimately, New York City itself spends more money hospitalizing patients like my uncle, instead of setting up a long-term psychiatric rehabilitation facility, especially for long-term AIDS survivors, since there is little to no help for this population. Another misfortune is that the majority of long-term facilities that are available for rehabilitation will not take a psychiatric patient.
In the United States, when a person is diagnosed with a mental illness (s)he is hospitalized, screened, and released. Should that person be alone without proper supervision? Wouldn’t it be better for that person to go into a long-term psychiatric rehabilitation facility? I believe so. According to The Diagnostic and Statistical Manual of Mental Disorders Report, “only about 60% of people with mental illness get treatment each year.” For certain, long-term care is desperately needed.
The National Institutes of Health estimates that, “26.6% of Americans ages 18 and older (1 in 4 adults) suffers from a diagnosable mental disorder in a given year, and about 6%, or 1 in 17 adults suffer from a serious mental illness.” This is a serious problem our entire country is facing. I concur with Dessa Bergen-Cico, Assistant Professor of Public Health, Food and Nutrition at Syracuse University when she says, “What is missing is the approach to mental health problems with a comprehensive ongoing strategy much like what we do for physical injury for which health care providers commonly employ a robust treatment that in addition to surgery would include any or all of the following: physical therapy, medication, preventative education and long-term follow-up.” This is the approach we need moving forward, so that people like my uncle aren’t defeated by the system. Such an approach would certainly give many families like mine more to be thankful for.