Mar 15, 2006
First, I'm addressing you by your first name because doctors usually address me by my first name without my invitation to do so. My apologies in advance if I'm lumping you in with a group of doctors who don't know how to show patients the same respect they expect us to show them just because they have a professional designation behind their name. Considering your response to the post below, I think my apology is in order.
I've only seen one other medical professional respond as honestly and truthfully about where we are with HIV as a chronic vs. terminal illness as you have, and that other professional was the psychiatrist here on The Body (and I commended him, as well). This is SO refreshing for me as a medical social worker with HIV. For six years I've advocated for this kind of approach from the medical community. Respecting our clients/patients enough to have confidence in their ability to find a productive way to cope with the truth about HIV (i.e., that no one KNOWS that HIV is only chronic until someone has lived the average life span WITH HIV...and so far, no one has) empowers them to find a way to maintain hope in the midst of the unknown - although some may be unsuccessful without the assistance of antidepressants, counseling, support groups and intensive bio-psychosocial case management. On the other hand, engaging our own need to "fix" the problem for our patients (even when our intention is to help them remain hopeful) often enables patients to be non-compliant with medication regimens because "HIV ain't what it used to be, right?" For those out there who remain HIV-negative but at risk for contracting the virus, your forthrightness regarding how serious this virus remains today illustrates the importance of maintaining a commitment to safer-sex (to the highest degree possible) for someone who might be experiencing safer-sex fatigue. Furthermore, whether or not our willingness to engage in honest dialogue like this ameliorates the problem or HIV/AIDS apathy in our community, at least we can say we chose to respect this collective INFORMED indifference, but not enable it and nullify our efforts to end this pandemic over the past 24 years.
Thank you for assisting me in maintaining hope that more physicians will follow your lead and genuinely respect their patients ability to take care of themselves when provided with all the facts - not just those that are easier discuss. And, to convey just how much I really mean that, please.call me Terry.
Best regards, Terry Davis, MSW
HIV vs. Diabetes Mar 13, 2006
Just curious and hope you will answer. If HIV is a chronic disease much like diabetes and treatable (and I know it is) then why do people immediately start asking questions about life expectancy when they find out they are HIV positive or have to undergo counseling. Unlike diabetes, where people just accept it and live on. Cant wait to hear a professional opinion.
Response from Dr. Frascino
Although HIV disease is becoming more manageable than in the past, the comparison to diabetes is probably overly optimistic. The first effective HIV therapies hit the market in mid-1996. These medications were potent, but also difficult to tolerate, due to side effects and toxicities. Dosing schedules, food restrictions and medication-storage requirements also made adhering to these medications difficult. The virus also has continued to evolve and subsequently various viral strains have developed resistance to the new medications almost as soon as they came into general use. Add to that that we are continuing to see unanticipated complications related to the new therapies both metabolic and morphological. For many people with HIV/AIDS it is not a case of "just accept it and live on." The challenges posed by a virus that attacks and destroys one's immune system cannot be overstated. We don't really know what the life expectancy of someone with HIV/AIDS is because the illness is variable from person to person and our ability to mange it effectively is still evolving. No doubt things are improving, but we still have a long way to go before HIV can realistically be considered a chronic manageable illness like diabetes.
| Response from Dr. Frascino
Actually since most folks here call me "Dr. Bob," your use of "Robert" sounds positively formal! I'm not one to stand on formalities, and I hate pretense, so by all means call me anything but Republican, OK?
Regarding how we share information with patients, as you well know, Terry, each patient requires an individual approach. My motto there is "One Size Fits One." However, despite the fact that our approach may need to vary from person to person, I absolutely agree honesty is always essential.
Stay well, Terry.
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