I didn't die, so...

it's pay back time. So says the government.

I am a long term survivor. I was diagnosed with HIV in 1987, most likely I was infected in 1981-82. By the early 90's the diagnosis changed to AIDS when my tcells dropped to 76 and I had all the classic symptoms, including a debilitating bout of shingles that left me in constant pain. My body was breaking down and I ran the gamut from thrush to chronic fatigue to weight loss to constant diarrhea. I could not hold down a job. Life expectancy for someone with an AIDS diagnosis was 6 months to 2 years. I was literally told to get my affairs in order. My Doctor suggested that I retire from my job as a clerk in a clothing store and collect Social Security Disability. Most of my friends were either dying or had died by then and I saw retirement as a way of saving my own life. In the early 90's the only drug to fight HIV available was AZT, which I took in combination with acyclovir and bactrim, but it wasn't enough to stop the onslaught of more opportunistic infections. Fortunately I didn't have to worry about earning a paycheck anymore and felt very relieved at that. I was receiving good health care through medi-cal and medi-care, and because I lived on SSDI I qualified for full drug coverage. It was basically a government insurance because money was taken each month from my check. I believe that is how I survived the 1990s before Protease Inhibitors, also known as "the cocktail", came along and extended my life expectancy.

My Partner is also a long term survivor and has experienced trials and tribulations even worse than my own.

We both have been taking the cocktail since 1997 and while my Partner has had to deal with serious cardio vascular disease and several bypass surgeries that may or may not be related to the medicine, I have only had to deal with the daily nausea, diarrhea, the painful neuropathy that I've had along, and the fatigue. We both have to be monitered every 6 weeks to see if our liver and kidneys are still functioning.

The great news is that we're both still here. I count my blessings. I survived what was once considered a death sentence.

Even after everything we've been through we love life and continue to thrive, but that is not without expense. Our medications alone cost over 3,000.00 per month for each of us. Doctor visits, emergency room visits, sometimes even hospitalization can and does go over $100,000.00 per year. We've been so lucky but our luck is running out, because the government now expects us to share in the expense.

How can we do that? I sometimes think about getting a job so we can have a little extra money, but I would then forfeit my pension and possible future benefits. And really, who would want me on the company group policy? That's besides the fact that I would need to find a job where they're very understanding about HIV, the side effects, and the time spent in the restroom. And I'm still not sure my health can handle the daily grind of earning a paycheck.

We live in one of the most expensive cities: San Francisco. The government doesn't care where you live. A certain poverty level is decided and whether you're in Peoria or San Francisco, if you're above that level you have to pay. Property you own and live in is not considered. Example, In San Francisco a person can own and live in a house worth $1,000,000.00, but if their yearly disability amount doesn't exceed 11,900.00, they qualify for the extra prescription help. Yet, if another San Franciscan pays $1,000.00 or more in rent, but their disability amount exceeds 11,900.00, even by as little as $15.00, they don't qualify for the extra help.

I could go on.....