Health Care Stories: "I feel trapped in the system."

“I was diagnosed with HIV in 1987. I am in my 50's and have a history of being succesptible to the drug side-effects, which keeps me from working on a regular basis, especially a 9-5 job.

For instance, I have even had three hip replacements in the last 10 years just because of medicine side effects. I cannot get any insurance other than Medicare because of my HIV.

I don't make enough money to afford the out of pocket expenses for the prescription coverages, and have had problems with some of my doctors on working with me on a payment plan for the medical expenses. It feels like some of my doctors have developed a different attitude toward "Medicare" patients.

Honestly, it feels like they know they won't get paid the same as with other Healthcare Insurance Companies. Because of the out of pocket costs through Medicare's prescription coverage, I have to get assistance with my HIV drugs through my state's drug assistance program, however, because of my need to change drugs that become unbearable due to the side effects, my doctor has to go through a "state approval" process which can be lengtthy.

It's not a perfect system and there's a lot of room for mistakes. The special approval is typically on the newer drugs and I just went through the process and had to be taken off my cocktail for 6 weeks while waiting for my new drug's approval.

I would love to have the opportunity to just have my doctor call in a prescription and go and pick it up at a drug store. I shouldn't have to wait and endure the process I have to endure just because I have a roommate and make a couple of hundred dollars more than the poverty level. This couple of hundred dollars means nothing compared to the healthcare costs.

My partner gets his medicare prescriptions paid for in their entirety and has his prescriptions called in to a pharmacy; and it's just over a differerence of a couple of hundred dollars a month. I have to wait for my prescriptions to be delivered to my doctor's office and pick them up there. And the delivery system is not always on time causing me to get off my prescription schedule.

There are so many holes in this system and it is so unfair. Long term survivors can be more succeptible to the long term effects of drugs, and I am one of those who has had to change prescriptions because of my intolerance to the side effects. Needless to say this has had a direct impact on my nerves!

I feel trapped in the system. I would love to be able to be a part of a National Health Care System and avoid the system I am currently in.

I would also like to be able to work when I can, but, am unable to do so due to the fact that the rules of the system I am forced to follow don't support me. I am also forced to pay for my dental bills because there are no outside dental insurance policies that provide for competant dental care. Most dentists won't even recognize these policies. I have tried more than one in my past and they simply don't work best for the patient.

My HIV meds put be in the GAP (or dough-nut hole as it is referred to) within the first 2 months of the year. Therefore, I have to get state assistance from the state of Georgia to help pay for my HIV meds.

This system is not an easy one. The state will either refuse to pay for some of the new drugs that are available, or they require special approval and the state makes you meet strict requirements for the new drugs. This system delays your getting on the new drug regimen. Having prescription coverage where I can deal directly with my doctor and a pharmacy would be of critical benefit to my situation, as I have had to come off my drug cocktail in the past while waiting for the paperwork to get approved.  Thank You for sharing my story!” 

Ron Kolb, Georgia

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*The individuals profiled in this post are sharing their real-life story 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.