"We are very successful at treating HIV patients now, and patients are living longer," said Dr. Thomas P. Giordano, assistant professor of medicine-infectious disease and health services research at BCM and senior author of the commentary. "There are some models that suggest that HIV patients will live as long as patients with other chronic diseases like hypertension or diabetes. That means people are expected to live decades with HIV infection. We aren't ready for that. We highlight four areas that we think are in need of additional research and attention."
Adherence to medical care
The first is that HIV-infected patients need to remain on medicine and in medical care for the rest of their lives. They will not thrive if they do not take their medicine and seek care as recommended.
"Adherence to medication and medical care is a known problem in the HIV infected population, and the research we have does not go beyond a few years, so we don't know much about how to maintain adherence for years and decades," said Giordano, also with the Michael E. DeBakey Veterans Affairs Medical Center and medical director of the Thomas Street Health Center, the Harris County Hospital District's HIV/AIDS treatment facility. "If patients do lapse in care, we don't know how to get them back into medical care."
Screening for other chronic diseases
Second, HIV-infected patients face unique complications such as diabetes, obesity, lung disease and psychiatric illness. Currently, there are no guidelines for screening for and managing these conditions in patients with HIV, said Giordano.
Also, physicians know little about how these physical and mental complications affect quality of life, long-term medication adherence and the mental and emotional well-being of the patient and the caregiver.
Sexual, reproductive health
The third consideration is in the area of sexual and reproductive health and how patients maintain a safer sexual relationship over decades.
"Because you have HIV does not mean that you give up your sexual life or cannot have children, but how do we promote a safe sexual relationship to HIV patients? Also, how do you educate HIV-infected patients to make good choices about reproduction?" said Giordano.
From acute to chronic care
The final consideration is related to caring for HIV patients. Previously, care was related to acute issues and maximizing health. Now doctors need to figure out how to provide care over the long term.
"The system for caring for people with HIV is in the midst of transitioning from an acute care model to a chronic care model," said Giordano.
Currently, most HIV care, including general medical treatment, is provided by infectious disease and HIV experts. However, Giordano said that further consideration should be given to whether there are enough infectious disease experts available to care for patients over the decades. Perhaps primary care physicians should assume the role of providing general medical treatment, he said.
Because these issues cross many fields of medical research and medical care, there is something to be gained by putting forth a new term for the patient – 'HIV survivorship,' said Giordano.
"We've heard people refer to themselves as survivors with HIV infection. Using that term in our research and conferences as a way to describe the kind of work that we do would help to organize this idea that we need to study how people can live with HIV and how best to care for people with HIV over the long haul," said Giordano.
Dr. April L. Buscher of BCM and the Michael E. DeBakey VA Medical Center also contributed to the commentary. Funding for this work came from the Health Services Research and Development Center of Excellence at the Michael E. DeBakey VA Medical Center and the National Institutes of Health.