My name is Anthony Johnson and I an 18-year survivor of HIV who has been through many physical, emotional, and spiritual trials living with this disease. Around six years ago I had health issues that forced me to stop working and I had to rely solely on assistance through local services and agencies because I had no income, insurance, or other means of support. I also fought the United States government for Social Security Disability for four of those years even though I had worked since I was twelve years old and was near death.
Gratefully my health is much better and I am giving back by assisting others in getting help when they need it. I work with all aspects of the community regardless of gender/gender identity, sexual orientation, disability, socioeconomic status, etc. If someone needs help then I will do everything within my power to assist them because I know the battle that they face. The reason I am writing you is not to talk about me or my life. I am writing in concern for the community and some falsehoods that I have heard regarding availability of services for those living with HIV and those who do not.
There seems to be a misconception that individuals with HIV/AIDS are getting a free ride and everything is provided on a silver platter. One belief is that HIV positive individuals no longer have to work because they get a check every month from Social Security. Some other beliefs are that individuals with HIV receive free medical care or shelter when they are homeless. There are other beliefs as well such as agencies and organizations have tons of money to help get needs met for individuals living with HIV/AIDS.
As an advocate assisting individuals in the community, I have heard people mention these misconceptions and say that they think it would be better to have HIV so they can get help. I cannot tell you how saddened, disappointed and angry these comments make me feel. To think that someone would even suggest contracting HIV solely so they can receive services! Come on people, it does not work that way! It is also a very dangerous and self-destructive thought.
Yes, there are those who want to be HIV positive and seek it out through unprotected sex with those living with HIV but as time progresses and they start seeking help, they find that it is to no avail. Many service agencies are no longer in existence and some are losing so much funding that they can no longer support and manage the clients they have let alone take on new ones.
This is in part because many individuals, companies, and organizations are no longer supporting services due to budget restraints. We are also in a state of economy that has not been very understanding or supportive of those with disabilities (not just HIV but others as well).
Most of the individuals I have worked with lately are those living with HIV and on the streets because they have no income. Some are there because they lost their jobs due to an inability to work and cannot afford their rent. They apply for Social Security Disability but find that it is nearly impossible to get due to recent governmental changes and do not have access to legal assistance. I was lucky. It only took me five years and almost losing my life before I received help and was approved for disability. Many of these individuals (like myself) are in the position NOT because they chose to be there but because of a simple error in judgment.
There are other costs that we as HIV positive individuals have that many people are unaware of such as costs of medication (mine is $35,000 per year), cost of medical care, and risk of a number of health issues due to an oppressed immune system. Many individuals are living without insurance and have difficulty getting care and medications due to a preexisting condition. No insurance company is willing to take on the costs at this time.
Also, many individuals have self-esteem issues and other mental and emotional issues and find themselves ostracized or reclusive due to stigma associated with HIV/AIDS. It is a human condition but misinformation and discrimination can lead an individual into doing things that are destructive such as seclusion, alcoholism, addiction, and in some cases suicide.
Recently I assisted a person who had been HIV positive for over twenty seven years who was ready to give up his life because he could not navigate the system. I have found this scenario too common and extremely painful to think about.
I want everyone out there to realize that there is no “easy way” or “free ride” when it comes to living with a disability, especially HIV. My disease is a full-time job where I have to work diligently to maintain my physical, emotional, and spiritual health. I have to work extremely hard to find help when I need it and many times it is not available to me because there are limited funds for HIV services. I have to work even harder to find help for those who come to me with needs because many times the needs are so overwhelming that it is debilitating to them.
Please think about what it would be like for you if you lived with HIV (or any chronic illness). HIV is not a free ride and should not be taken lightly.
Anthony Johnson, Community Advocate