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Keeping It Real
Speaking Up for Yourself or Does HIV Cause Laryngitis?

By Rich Arenschieldt

April 2002

No, this isn't an article about problems with your voice box. It's a reflection of what has been happening around The Center for AIDS (The CFA) lately. Our client traffic and phone calls often keep us informed of what is "seen and heard" on the street, and lately we have noticed that things are kind of quiet out there.

Since "Treatment Information and Advocacy" is what we do, maybe it's time to stir the pot a bit. The question is, why is everyone so quiet? When we were kids, our parents told us, "Behave; don't speak unless you are spoken to." Now it seems like our doctors, in some cases, have replaced our parents.

The typical scenario is this: Patient A has a monthly appointment with Doctor X. Patient A goes to sleep the night before the appointment pondering several items to discuss with Doctor X. Instead of counting sheep, questions dance like sugarplums.... "I wonder what those little bumps on my skin are? I have to ask the doc about this pain in my abdomen. I seem to feel more fatigued lately. I wonder if there's anything he can do to help me with that." The next morning the patient awakes, goes to the appointment, sees the nurse, and then visits Doctor X. The doc looks at the lab results and says "Everything looks fine, we'll do some more blood work on you for your next appointment. I'll see you in 2 months." The doc is on the way out the door and Patient A blurts out the concerns about fatigue. Without stopping, the doc says, "That's only a medication side effect, or it could just be HIV itself -- I wouldn't worry about it too much." Doctor X exits and Patient A is left sitting on the exam table wondering, "Were my questions really answered?" On the drive home Patient A thinks about all of the things that should have been discussed during the appointment and regrets not having been more assertive.

This scenario doesn't occur all the time; many physicians take great care to translate to their patients the complicated factors in treating HIV. It is not unusual to hear from patients that their docs spend an hour or more with them during a routine office visit. However, several circumstances are occurring that infringe on a productive patient/physician relationship.

In this era of managed care, the medical profession is forced to squeeze every dollar out of every minute of every day. In addition, other factors are contributing to increased demands on your doc's time and energy:

The CFA isn't worried about patients who have terrific relationships with their medical providers. What concern us are those who read the previous office visit scenario and said, "Yep, that could be me, I could be Patient A." We know that many patients walk out of their doc's offices more confused than when they arrived, and we constantly ask ourselves questions about this "silent" patient. The CFA receives calls from men and women who often say, "I meant to ask my doctor several things, but just got nervous and forgot." Fortunately, The CFA is able to respond to those concerns and steer people to sources for the answers they need.

In Texas, there is a fixed pool of HIV-experienced medical providers and an increasing number of patients who require their attention. Given this set of circumstances, The CFA is compelled to tell HIV-positive individuals, "Speak up about the management of your disease!"

OK, that's the advice, but how can we help you to put it into action? What can The CFA do to stop the "disconnect" between patients and their medical providers? We have an answer called Conversations at The CFA, an ongoing monthly series of community forums designed with patients and health care providers in mind. With these forums we hope to accomplish several goals:

Early in the epidemic there was important input from people directly affected by this disease regarding treatment, drug approvals, and social services. As time has passed, many of those voices have disappeared. Perhaps it is because there were so few options available years ago. Now that HIV is widely perceived as a "chronic and manageable" disease, many folks think that they can just move from one treatment to the next. The truth is that there are very few options out there because many treatments are too similar to one another.

Conversations at The CFA can put patients back in charge of their care and increase their knowledge about HIV. These once-a-month dinner forums will cover upcoming topics such as:

These forums provide an opportunity to meet and mingle with other HIV-positive men and women who are interested in learning about a variety of HIV-related topics and how to get more involved in their medical care. Our next "conversation" will be on Wednesday, April 24, at The CFA, 1407 Hawthorne, in Houston beginning at 6:30 pm. The topic will be New Drugs for the Treatment of HIV Infection and will focus on the new drug, tenofovir (Viread).

You don't have to be a scientist or doctor to attend, just a person interested in knowing more about what is available in the fast-changing world of HIV treatment. The CFA can help you find your voice!

If you'd like more information, contact Rich Arenschieldt, Director of Education and Outreach at The CFA (713.527.8219 or rich@centerforaids.org).


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