(www.BlackDoctor.org) -- Twenty years ago, when I would encourage many black men and women to get tested for HIV, the response I frequently got was: “What difference does it make whether I know my status or not, there’s nothing that can be done and I’ll die anyway. I just prefer not to know.”
Other people would steer away from getting tested for a totally different reason: “If I test positive for HIV and my family finds out, I’ll be kicked out of the house and living on the streets."
Sadly, I have known far too many situations where individuals did indeed get kicked out of their homes, lost their jobs and even became targets of physical violence simply by being HIV positive. This illustrates just how devastating the impact of the stigma associated with an HIV diagnosis was in the past.
Now, twenty years later, we have over 30 medicines for treating HIV disease and have transformed this infection from an automatic death sentence, to a condition where a person may live close to a normal lifespan. Stigma against HIV has softened some as we have become better educated and HIV survival improved, but it still remains a major impediment to people getting tested and communicating their results.
Let’s use two clinical cases to explore this issue of testing. These cases are real but the initials have been changed.
CASE 1. C.S. is a 20 year old African-American man who was diagnosed 2 years ago with HIV disease. He never followed up with care and was never started on medications. He has recently been hospitalized with complaints of fever, night sweats, and weight loss. He is also experiencing weakness in his arm and headaches. A scan reveals the presence of a mass in the brain which turns out to be lymphoma (a cancer of the lymphatic system). He requires immediate treatment for the lymphoma to save his life, but his immune system must be built up rapidly in order to endure the cancer therapy and have any hope of a response. This man is facing death at just 20 years of age!
This patient is in a dire situation. His viral load is very high, meaning there is a lot of virus in his blood. To make matters worse, he has a dangerous cancer that can kill him.
We don’t know what the status of his immune system was when he tested positive two years ago, but he received no follow-up care after the diagnosis. Being only 20 years old, he must have progressed to AIDS very rapidly:
1. In dozens of studies, people who are diagnosed with advanced HIV disease or AIDS do not survive as long as those diagnosed and treated earlier. African-Americans are often diagnosed when the disease is more advanced, primarily because we don’t get tested until we are already sick.
2. Patients diagnosed with advanced disease often have developed complications from HIV that may not ever have occurred if they had been diagnosed earlier and received treatment to keep their immune function in a good range. They are at risk for life-threatening infections, cancers and other HIV damage to various organs
OK. So you get the message. You go get tested, the results come back. And now, the envelope please… You are NEGATIVE! Congratulations! But is that the result you were expecting? Are you a person who has been exercising appropriate precautions for a long time or have you been repeatedly putting yourself at risk? Were you on pins and needles and saying your prayers while you awaited your test results or were you at ease? Consider the case of Russian Roulette, a patient I saw in clinic two years ago.
CASE 2. R.R. is a 19 years old African-American male college student. He was diagnosed and confirmed to be HIV positive. I met him in clinic and recruited him for my research study. It was the end of the semester and he was preparing to leave to go home for summer break and as a result, we could not complete our panel of laboratory tests. To get a feel for when he might have gotten infected, I asked him if he had previously been tested. He indicated that he was tested about five months previously and was negative. He further shared that he had been tested again about another 5 months before that time. I asked him why he kept getting tested so frequently. He confirmed what I already knew. He was consistently engaging in high risk behavior, getting tested with a prayer that he was negative, but never changing his behavior after being spared.
This last time, his luck ran out.
This is a devastating diagnosis for a college student. He simply could not go home, hand his parents his report card for the semester and his HIV test results. He needed medical care but couldn’t ask Dad to use his insurance card or go to the family doc. The results of his diagnosis would devastate his family and could have some severe consequences for this young man’s future (remember we mentioned stigma earlier?).
An HIV diagnosis isn’t the same as a diagnosis of high blood pressure. I identified a clinic in his home city where he could go and get confidential care at no cost and he could come back to our clinic when school started for the fall semester. Because he was recently infected, his immune function should be normal and shouldn’t require treatment (although there is evidence that he might gain certain benefits if he did start medicines right away). In any event, we couldn’t treat him because he was leaving school.
So what do these cases teach us?
1. GET TESTED. If sexually-active, perhaps consider annual or bi-annual testing
2. Maintain safe behaviors. If you test negative, you should be counseled to maintain safe practices so that you remain negative. If you are engaging in high-risk behaviors, let the negative test be a warning for you to change and you should discuss safer practices with your medical team, counselors and social workers.
3. Follow up. If you get a positive test, be sure to get follow-up care (which Case 1. Failed to do). Be sure to protect other individuals for getting infected. Get a medical evaluation and start treatment if necessary
4. Be sure the person testing you is qualified. Get tested by experienced clinicians or testers who are trained to interpret the test correctly, refer for test confirmation and provide mental health counseling if needed.
As a closing note to show you how far we’ve come, the young man represented in case 1 will likely survive if he responds well to the treatment for his cancer. We’ve made tremendous advances in the treatment of these types of cancers as well. Lab tests indicate that he is sensitive to all HIV medicines, giving many current and future treatment options.