Have you had your Flu shot this year? What was your last total cholesterol and LDL level ? Have you had your scheduled mammogram to screen for Breast cancer? Have you had a colonoscopy or Cologuard to screen for colon cancer? What was your last PSA (prostate specific antigen) in your Prostate cancer screen? What was your last fasting blood glucose level or HBA1c in a diabetes screen? Hopefully, everyone has had these tests and vaccinations appropriate for their age and gender. If not, you need to have a discussion with your health care providers.
Now, what is your HIV status? When was the last time you were tested? I suspect many of you who read my articles are being treated for HIV because I write about new treatments, and break-throughs in understanding this disease and research for a cure. But I write about other health issues that are not limited to people with HIV, so I’m sure I have some readers who likely think they don’t have it. But do you know your status for sure? Have you been tested? If not, why not? Has your medical provider ever offered you an HIV test? Are you afraid to get an HIV test or even ask for one?
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Some people are afraid to get an HIV test because of the problem of stigma. One definition of stigma is a mark of disgrace associated with a particular circumstance, quality or person. We learned early in the epidemic that people with HIV might be gay, could be drug addicts or perhaps were promiscuous. All of these circumstances were viewed negatively in black communities and in broader society.
To make matters worse, the disease was fatal and could be transmitted by sex or through intravenous drug use. But since the start of the epidemic, out of the over 70 million people that have been infected with HIV globally (including 32 million people who have died), the overwhelming majority are in none of these categories: they were/are not gay, they did/do not use drugs and they had/have no more sex than anyone else. But even if they are in one of these groups, to judge them as to what type of a person they are and determine what type of quality of life they should have is totally out of bounds. The belief that people with HIV are bad and somehow deserve to have a potentially deadly disease is a pathological way of thinking that has plagued black communities worldwide and has essentially guaranteed that we will never control this epidemic in our communities.
About 14 years ago, I was doing some work with HIV clinics in the U.S. Virgin Islands. The stigma was so great against HIV in the Caribbean that one clinic in St. Thomas Virgin Islands had patients coming from Puerto Rico, Haiti, Dominican Republic, Barbados, Jamaica and other territories. Imagine that! These people felt so much in danger for their safety and well-being that they sought medical care in another country rather than risk visiting a medical provider at home where someone they knew might learn of their status.
The U.S. is not immune to such phenomena. In 2004 while working with some clinics in New Haven, Connecticut, I observed that Latino patients at one clinic were often late for their appointments because they were traveling from the other side of the city and having to catch up to three buses. Yet there was an HIV-specialty clinic right in their community! They would not take the risk that perhaps the receptionist in the clinic could be their neighbor, or someone might see them going into the clinic. While this behavior may seem extreme, there have been real consequences of having HIV that go far beyond the disease itself.
People with HIV disease, particularly women, are often targeted for violent acts and some people have been killed. Gender-based violence is a real problem in Africa and the Caribbean and the U.S. is certainly not immune. I have had patients put out of their homes by their families. In one case, one of our patients had her medicines thrown away when a family member discovered them. In different parts of Africa where I worked 6 years ago, the number one reason why HIV patients did not take their medicine was the lack of disclosure to their families.
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In other words, their family was not aware of their status and they did not want to be found out to be HIV positive if caught taking medicines. Why? FEAR! Stigma is real and stigma kills.
I think the stigma problem is getting better. The fact that HIV is a chronic manageable disease like asthma and diabetes has helped some. I also think that because people suppressed on treatment do not infect other people and because of the growing availability of strategies to protect uninfected people, like PrEP, HIV is less stigmatizing. Commercials on T.V. about HIV treatments showing happy healthy people are very helpful. But we are not out of the woods yet. The best way to eliminate stigma is with accurate information. Knowledge is the best tool to battle fear and ignorance.
So back to the original question; Have you been tested? You are entitled to your privacy but the most important person to know your status is YOU. Ask your medical provider for a test. If you don’t feel comfortable doing so (and this is a real issue we need to discuss), then inquire about anonymous testing through your city health department or through a Ryan-White Care Act-funded clinic in your area.
Another option is to do home testing. This is not my favorite because there are opportunities for people to misinterpret the results. But if you choose this route, be sure there are medical professionals that can help interpret the test and refer you to other services. You may first want to talk with the pharmacist where you purchase the kit to find out what support they can offer. Some pharmacies do offer testing. Also remember that any positive result from a home test kit MUST BE VERIFIED through a medical provider.
It is estimated that there are about 1.1 million people in the US with HIV, but about 15% of these people (about 1 in 7) do not know they are infected! Are you one of them? Treatment as Prevention works, but you have to know if you’re infected and need treatment. PrEP may be an option for protecting yourself after confirming you do not have HIV. You must know your status so that you can immediately get the best treatment for yourself and to protect other people. Do not let the stigma of HIV disease scare you away from getting tested.
Find a confidential source of testing (some of the sources I mentioned above) and your privacy will be protected. The only ones who will know will be those you choose to disclose the results to, whatever they are. There are strong legal protections you have against any person, company or organization obtaining your medical information without your written permission.
Finally, for World’s AIDS Day, I would like to offer immense gratitude to the hundreds of thousands of individuals over several decades who have participated in clinical trials to help us discover new treatments and understand the disease better. If it were not for them and their commitment, we wouldn’t have very much to celebrate for World AIDS Day.
Dr. Crawford has over 25 years of experience in the treatment of HIV. While at Howard University School of Medicine, he worked in two HIV-specialty clinics at Howard University Hospital. He then did clinical research as a visiting scientist with the AIDS Clinical Trials Group (ACTG) at Johns Hopkins University School of Medicine. He served as the Assistant Chief of Public Health Research with the Military HIV Research Program where he managed research studies under the President’s Emergency Plan for AID Relief (PEPFAR) in four African countries.
He is currently working in the Division of AIDS in the National Institutes of Health. He has published research in the leading infectious diseases journals and serves on the Editorial Board of the journal AIDS. Any views and perspectives in his articles on blackdoctor.org are not representative of any agency or organization but a reflection of his personal views.
