BEING RESPONSIBLE IS IRRESPONSIBLE

At least that is what I'm starting to believe in our country.  I'm a responsible citizen: I pay my taxes, I bring home an honest paycheck, I take care of my heath, I volunteer, I even vote.  However, I am starting to understand that trying to stay ahead and doing the right thing is working against me.

Let me explain.  I work a full time job through a temp agency.  The agency has an extremely limited benefits package that will not cover my specific HIV medical needs.  I also work part time at night at a hotel of which is my only medical coverage.  This part time gig is a union job.  Regardless of your opinion of unions I will say this: I believe unions are necessary solely for the purpose of employers and employees having equal opportunity in an environment that would have otherwise.  Sure, there are abuses on both sides, but I digress.  My union benefits differ from regular medical benefits in a number of ways.  I cannot choose my medical care.  Instead, it is required that I see their doctors and their specialists in order to be covered.  The problem with that is that it can take as little as a few months to see a doctor for a sore throat.  Their response is if you need to seek help go to the emergency room.  Being HIV positive and required to submit bloodwork every three months in addition to my primary care follow up of said work, it is a necessity that I am able to schedule my appointments in a reasonable matter.  Of course there is no HIV specialist under my medical plan.  Finally, if I want to see a specialist not only would I need a referral to see that specialist (every time I need to see him), but I would also need a referral to get bloodwork drawn (again, every time I need it done.)

For the time being, I have been paying for my blood work as well as my doctor visits out of pocket.  Thousands of dollars later and I still owe a significant amount.  Unfortunately, until we find a cure, or I quit my jobs all together, this cycle will have no end.  Naturally, I can see how the world outside of HIV take this illness less and less seriously given your "once-a-day" medications and living longer lives.  This side of the epidemic isn't spoken about enough to the general public.  I've had endless meetings with social workers over months on end.  It has come to the point where I have pleaded with them with what I should do.  "Give me an ultimatum," I say. 

Scenario One: IF I quit my part time job and have no medical benefits I will qualify for New York's ADAP (Aids Drug Assistance Program.)  Consequence to Scenario One: my income will be significantly less and I may be forced to leave my home and move back in with my parents.  My temp job is above the poverty level, but just enough to barely make ends meat, so I don't qualify for government assistance.  Food will become a luxury.  My parents live outside New York City, and our state is under the radar for falling into the ADAP "waiting list" category.  For further information regarding ADAP and the waiting lists (if there is one in your state) and what you could do to help, click on the website here: http://www.adapadvocacyassociation.org/ 

Scenario Two: IF I keep both my jobs I will not qualify for ADAP.  Consequence to Scenario Two: Not only will I run myself down with fatigue working 60 hours a week like I currently do, but I will somehow have to conjur up $750 every three months.  At least my medicine is still covered with my current part time job.  That is, they haven't questioned my prescriptions at this point.  Praise be to God that I don't have to ever pay for my medications out of pocket.  Seeing how much each individual pill costs turns my olive skin to snow white.

There should be a law of some sort where employers only have a certain time frame to decide whether or not they'd like add a temp employee to payroll.  There should be consquences should they string hardworking professionals along.  Maybe there is, but I doubt it. 

I haven't reached my offical one year mark being HIV positive and I'm already exhausted.  I'm tired of closed doors and "we can't help you" answers.  I try to do the right thing by working hard and paying my dues with no end in sight.  I was once taught to aspire to a world with a house and a white picket fence and landscaped gardens.  For all the Americans on waiting lists, live hours and hours away from medical care or try to do the right thing and still get spit on like me I say this: even in a metropolis like New York City, you can feel alone.

We really are all in this, together.