By Anthony Johnson
Anthony Johnson is a 16 year survivor of HIV and organizer of the Gay/Bi HIV Social Group, BOLT. He has posted numerous letters to Facebook warning of the potential repetition of history with the horrors when HIV first reared its ugly head 30 years ago.
I am angered, afraid and dismayed at the recent attacks on individuals who are HIV positive in the state of Florida and the country as a whole. I am not talking about physical attacks, but we ARE taking a beating.
Because of governmental agency mismanagement of appropriated monies and a new governor who thinks that AIDS is a four letter word that must not be spoken – that should be hushed – the HIV positive community is suffering.
Yes the HIV positive community is costly; I can personally attest to that. On average, my medications cost over $31,000 per year. This is just medication costs and does not account for the THOUSANDS of dollars spent annually on doctors, labs and hospital stays. However, can you REALLY put a cost on a human life? Am I not as worthy as the next person because I have a HUMAN virus?
I do not think it is cost alone that is an issue (although it is a BIG part of it). I feel the bulk of the problem is stigma and fear. Thirty years after the disease came to be known, there is still the misconception that this is a GAY disease, a DIRTY person’s disease, or a SINNER’s disease. This is ridiculous and preposterous! This disease is a HUMAN disease.
If you are human (and I assume you are) then you are AFFECTED and at risk!
And I ask you this: Why do you fear saying the words HIV or AIDS? Why are you afraid to acknowledge its existence? Why do you fear me as an HIV positive person? The only fear you should have is waking one day to find your friends, your family, your loved ones, dying because you were too afraid to admit the truth.
It is time to stop this “It is not my problem; It is not my disease attitude.” It is time to start working TOGETHER to find solutions to the problems of HIV infection and the rising cost of care.
If the government is that concerned with cost, don’t take lives by reducing formularies or restricting people from getting help. Fight the pharmaceutical companies and force them to let go of the patents. Do not let them reapply if they change a formulary. I understand that they are in the business of making money, but not at the cost of the MILLIONS of lives affected by their greed every day.
Apathy, ADAP, and Anger
Merriam-Webster’s Dictionary defines apathy as:
•lack of feeling or emotion: impassiveness
•lack of interest or concern: indifference
I feel that this is the situation with the ADAP and Ryan White funding issues that are threating the lives of the people who receive assistance through these services. The HIV positive individuals who receive assistance through these programs believe there isn’t a problem because they have not seen the effect of not having their medications or services readily available to them.
Individuals of today have forgotten what our brothers and sisters before us sacrificed. They gave up their time, their energy and, for many, their lives. Their unwavering dedication and care for a community that was downtrodden and broken brought hope that we, as HIV positive individuals, would be able to live happy, healthy lives. If it were not for their fight, we could not live.
It is horrific to think that we, as HIV positive individuals 30 years after the crisis began, are faced with the same hardship and ignorance of a government that would rather ignore the fact that HIV exists and let us die. They are willing to sacrifice the many lives of people infected with this disease in order to save a dollar. The government is telling us that we are not worth more than a piece of paper with ink on it; we are not worth more than the change in their pockets.
What I find even sadder is the apathy of the HIV positive community as a whole. We have fantastic advocates and HIV positive individuals who are fighting daily to protect us and keep the services we need to survive. That represents, however, only a handful in comparison to the amount of HIV positive individuals who live in the state of Florida and the country.
Why are they not standing up with fists held high, screaming at the top of their lungs? Why are they not fighting for their lives? Do they think the government will help? That the government will not allow it? WRONG!! It is the government that has brought us to this point.
In my recent conversations, I have heard many advocates who are angry and frustrated with the HIV positive community because they are not fighting. Is it fear of reprisal? Is it fear of disclosure? To me, the biggest fear is the prospect of finding my friends, family and loved ones in their hospital beds gasping for their last breaths because they were unable to get the medications they needed to maintain their health.
I guess I am angry at the HIV positive community (with some exclusions – and you know who you are) because I recently lost someone dear to me and have another friend who is ill. I have lost three people in three years. I DO NOT WANT TO LOSE ANYONE ELSE BECAUSE OF THIS DISEASE! I especially do not want to lose them because I was APATHETIC and did not fight to try to save their lives.
Anthony Johnson is the organizer of BOLT, an HIV?support group in Fort Lauderdale. He can be reached at AEJTYGER243@gmail.com