Moms Talk Q &A: Silence = Death When It Comes to HIV, How Do You Talk to Your Kids?

On Nov. 7, 1991, Magic Johnson held the press conference that made the world slam to a stop; his shocking revelation that he would retire—immediately after discovering he had tested positive for HIV.

Magic, the superstar, became the first heterosexual black male to courageously put a new face on AIDS. To the public this was no longer just a "gay" disease. 

Almost 14 years later, I was seated at a very posh breakfast setting in Pasadena for our first high school art meeting with faculty and parents.  I listened as parents and teachers debated the best resources to gain monies for the curriculum. The dialogue normally would’ve engaged me in the spirit of fundraising and for the love of the arts, but the night before my son had informed me that his friends heard that Magic Johnson was cured of AIDS—it had been on the news.  

Having had several friends die of complications from AIDS and having friends who now live with HIV, it disturbed me that the boys misinterpreted Johnson’s viral load of no longer being detectable as a message that the basketball hero was now cured. AIDS, to them, was now a thing of the past.

I raised my hand and stated that my son and his friends felt that Magic Johnson was cured, that I loved the arts but wondered whether our school was teaching sex and health education so that our kids could live to fulfill their chosen dreams? Silence… whispers…

Then, a school official cleared his throat and stated that the art department didn’t handle the academic department’s issues as he continued with, "Next hand to help us raise monies for projects?” 

That was four years ago, and I’m not convinced schools have changed their information banks in making a difference in reference to  HIV/AIDS.

The first time my son asked me about condoms I had him put two fingers up and showed him how to use one. My son never knew his deceased father and with raging hormones upon us I vowed I would not lose my only child to a preventable disease or to early fatherhood.

The harsh reality of the Human Immunodeficiency Virus (HIV)—the early stages of Acquired Immune Deficiency Syndrome (AIDS)—is that far too many people contract and pass along the incurable disease without any knowledge that they have it.

Cases continue to rise at alarming rates, despite efforts to reduce the prevalence of the epidemic. While the disease is a nationwide concern, California is among the states under the spotlight, ranking second in the nation in the number of reported cases of HIV/AIDS in 2010. New York ranked first, and Florida third.  

From Hip Hop HIV, “With the United States breaking the 250 million mark with diagnosed STD’s, it is important to be cautious what you are doing and who you are doing it with.  Although that statistic may not shock you, one that will is that close to 5% of these STD (Sexually Transmitted Disease) rates are diagnosed from children 13 and under. Last year’s statistics:

           159,606           Diagnosed Cases with        

                    687           Diagnosed under the age of 13

Total 160,293    “Diagnosed” being a key factor to the known information.

My friend John (not his real name) has been living with HIV for over 20 years, “People think I’m gay or bisexual. When you’re a man—especially a black man—with HIV or AIDS, that’s what people assume. AIDS is as much in the closet as cocaine! It’s not that it doesn’t exist. It’s that no one wants to talk about it. When I first found out [about having the disease], I didn’t want to tell anyone. I couldn’t stand the isolation, the looks and the whispers, but then when I met someone I wanted to be intimate with, I was obligated to tell them. That was the hard part.”

 John married a woman who also has HIV. Angrily he says, “We are forced to live in a secret society that is hidden. It’s not that we’re not among you, we’re all around you. No one is educating the public like in the early days of the disease because it has become a manageable disease to the U.S.  Most people assume the ignorant reside in Africa or India.”

Not everyone living with HIV or AIDS is as honest as John. I am proud to know him.

Young  Cameron Siemers I had the privilege to meet at an AIDS fundraiser in NoHo four years ago. Cameron, a hemophiliac, was given tainted blood as a toddler and by age 7, was diagnosed with HIV and given a grim three-year survival prognosis. 

Today, Cameron, 29, has his own Foundation for Hope (see video) to help obtain life grants for kids with rare diseases between the ages of 18-28. Cameron grew up under the benefit of knowledge and research that the Elizabeth Glaser Pediatric Foundation has provided for children born or diagnosed with HIV.  Elizabeth Glaser also was given tainted blood, which she passed onto her children. Both Elizabeth and her daughter died from the disease but her son with actor-director Paul Michael Glaser is living with HIV and a friend of Cameron’s.

Board certified infectious diseases expert, Amesh A. Adalja, MD, Center for Biosecurity of UPMC Department of Medicine University of Pittsburgh Medical Center answers a few questions:  

What are the statistics of HIV/AIDS today and its impact?  

“There are over 1 million people in the US with HIV/AIDS today. For new HIV diagnosis the age group 20-24 is the hardest hit; for new AIDS diagnosis it is age 35-39. I think that since HIV/AIDS has become a treatable chronic disease, the sense of alarm over it has somewhat lessened. In the developing world, HIV/AIDS is the major factor for mortality and diminished life spans whereas in America it has less of [an] impact.  

I think that some people infected in the early years of the pandemic were lucky to remain alive long enough for new drugs to be developed that revolutionized the treatment of HIV. It is important to realize that HIV, though treatable, is still a concern for those who practice unsafe sexual practices (i.e. without a condom) as over 20% of those with HIV do not know they are infected.”  

What are drug cocktails and how do they come into play?  

“ 'Cocktails' [are] the groups of medicines used that work for a period of time then stop working and the patient has to use a new group of cocktails to see if the T-cell count raises. Most of the time, in the U.S., a drug cocktail can be found that will work and completely control the virus. However, sometimes side effects or resistance by the virus to the drugs will cause the cocktail to not be optimal and a new cocktail will have to be formulated in order to control the virus before it has a chance to reduce T cell levels.”  

Volunteers with the “Respect Yourself, Check Yourself, Protect Yourself” (RCP) Movement’s StreetScare event spread out in Fort Lauderdale, FL, to do just that: use an in-your-face approach to raise awareness.  Maybe we need to follow that example. Despite efforts to reduce the prevalence of the epidemic, cases continue to rise at alarming rates.

Experts say HIV is preventable and ignorance is its greatest ally. Due to a lack of information, people often fall victim to stigma and silence. We can rid ourselves of the devastation and give hope through education and by talking.

If we don’t have dialogue at home or in our schools, where or when will it start?