Health Care Stories: Violence Survivor Struggles for Care with HIV

Under current Medicaid rules, many HIV-positive individuals must wait until their health has significantly deteriorated in order to qualify as categorically “disabled” and become eligible for state assistance.  Broadening Medicaid’s eligibility will allow more low-income individuals to access otherwise prohibitively expensive health care coverage when they need it most.

“I have been positive since February of 1997.

I was walking down the street in Charleston, SC when a group of men jumped me beating, raping, and choking me to death. As I felt death coming near, I heard a man screaming "I am going to kill you because some white woman gave us AIDS!".

I knew then if I made it through this, that life would never be the same. The police found me naked and passed out lying in the middle of the street with every bone in my body broken .

After being transported to the hospital the care team got people from People Against Rape, Low Country AIDS Services, and a psychologist to talk to me often. I was in the hospital for 3 months, in a full body cast, living with 10 tubes extracting fluid from my collapsed lungs.

This was a time of like when I just wanted to die. While in the hospital the Medical Indegent grants paid for my hospital bills and I am very greatful. Upon release from the hospital, the only person that would take me in to help me learn to walk, talk, and comprehend again was a minister and his wife from a church I had been attending. No one--not even a nursing home--would take me because I was not on Medicaid and the threat of AIDS.

I applied for Medicaid and was turned down. As time went on, the virus showed its weary head and it all began. I had no way to pay for my treatment and medicine. The Ryan White grants helped some with my bills from the clinic and ADAP accepted me. Now that bills were piling up at the clinic and my credit was going to shambles. I applied for Medicaid again. My T-cells were only 279 and my viral load was so high. Still I was turned down again.

Time and time again, I have applied for SSI and Medicaid to get some help with other health problems due to my status and I have been turned down, because I was "too healthy".

In 2005 I experiences 2 cerbral aneurysms in my Cerbral Aquaduct. This was a "trip with out leaving the farm" you may say. I went through 2 brain surguries and was left very weak, and helpless. I applied for SSI and Medicaid to help my bills and living situation so I could get accepted into some HOPWA housing somewhere. Still I was denied.

During 2009 AIDS WATCH I spoke at the ETHA meeting about this plight of injustice to health care and a begging plead to heath care reform this system. I am now an honor student and live a healthy life with remarkable HIV T-Cells and non-detectable but how about others now who don't have the tenacity to rise above the system no matter what?

I never felt so appalled at a health care system in my lfe as I do in the United States. So many people get Medicaid but not if you have HIV. I applied for insurance and have been turned down time and time again. I cannot get life insurance. I have been turned down in groups for substance abuse help because of my status and how others felf. No insurance, no Medicaid or Medicare and no help.

I hope this story helps you and together we can make a change.” 

Elizabeth Shepherd, North Carolina

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*The individuals profiled in this post are sharing their real-life story and image to put the current healthcare-reform debate in context. Media interested in interviewing HIV-positive people about health-coverage issues should contact AFC Communications Director Johnathon Briggs at jbriggs@aidschicago or 312-334-0922.