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Stuck in the system

March 1, 2011

Again, it has been a long time since I have written.  I returned to work, I absolutely love my job, and I do not want to give it up.  Unfortunately our, so-called, system of health care, is so complex I will have to limit how many hours I work.  The fear of losing the foundation (health insurance) that keeps me alive, makes me feel trapped and powerless.  I feel stuck in a system with no way out.

I am currently on Social Security Disability Income (SSDI) with Medicare, Medicaid AIDS PAC Waiver (Florida), and Ryan White.  There is no way off this care.  There are too many eligibility requirements, income limits, etc., which I must maintain in order to keep my medical benefits.  It seems my efforts to try to better myself are met with closed doors everywhere.

Every agency that is involved in my care has a different set of policies, income requirements, and limits that I must follow in order to safeguard my access to healthcare and access to medications.  It is complicated, frustrating, and overwhelming.

The ADAP waiting list in Florida has currently over 2,000 people on it with no relief in sight.  There is not enough money to help everyone that needs it and things are only going to get worse.  So why would I jeopardize losing my benefits by going back to work?  All my friends think I am absolutely crazy.  Maybe I am crazy.  Maybe after all these years, I have finally lost it!

Let us see if I can briefly explain the complexities:

Social Security Disability will allow me to work through what is called the “Ticket to Work” program.  The trial period is 7 months and I can make as much money as I want without losing any of my Federal benefits (the key word is Federal).  After the trial work period, I can continue to work but if I make more than $1,000 a month, I jeopardize losing my disability benefits permanently and all the health insurance that goes along with it.  The agency that is supposed to be helping me through this maze of complexities has been a joke and no help at all.  We can talk more about that in another blog.

AIDS PAC Waiver Medicaid (State of Florida) has an income limit of $2022.  Any monies made above that have to be put in what is called an “Irrevocable Income Trust Account” which Medicaid gets upon my death (They can also put a lien on my home, but that is another story).  However, no one will tell you that this trust option is available.  When you talk with Medicaid, they pretend as if they have no idea what you are talking about.  My HIV Case Manager had no idea; we had to get with her supervisor who only knew a little.  She kept referring to her notebook and could not answer all my questions.  I am still waiting . . .

 The trustee (you have to have one) on my “Irrevocable Income Trust Account” can pay my bills out of the account and pay for my health care, but I am still not clear about everything in relation to this account.  I know that Medicaid has to approve it (which is still in progress) and they can audit the account at any time.  This trust account will only benefit during the trial work period because after that, as I stated earlier, I have to reduce my hours to make under $1,000 a month (Federal policy).  Isn’t that exciting?

My new boss has stated that she might be able to offer me a position with benefits but she would have to reduce my pay in order to provide that for me.  Then there is the pre-existing aspect of it all.  The government classifies me as “living with AIDS”; I also have slight kidney damage from the meds, high cholesterol, high triglycerides, and sometimes a bad attitude.  I would not be covered for an entire year for any of my health concerns.  What would my co-payments be even if I were covered, $400 or $500 a month (for meds) plus doctor visits?  My meds are currently over $4,000 a month.  Could I financially pay for everything?!?  Would I make enough to make it worth while?  The position I have is a grant position.  What happens when the grant ends?  Would I still have a job?!? 

I dream of living in a society where I did not have to worry about whether or not I would have access to care and life saving medications; what a glorious place that would be.  Free of fear, free of worry, free of the stress that burdens my mind, my soul, my body.  My spirit would be free so that I may focus on taking care of myself.  I could focus on eating right, exercising, sleeping well, yoga, and mediation.  A dream – what a beautiful dream.

I am tired of fighting a system that does not support my efforts to feel human; sometimes I am just tired; tired of fighting  . . . but I will never give up HOPE.

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3 Comments leave one →
  1. March 2, 2011 2:12 pm

    Dear lovinglife101, I’m left speechless at the B.S. your medical system is putting you through. Especially when you like your job and it’s important for your immune system that you have a sense of well-being in your life. I wonder if taking some time to do mini-meditations, and letting this heavy decision float away from you for a few minutes each day for a while might help you settle into doing what is right for you.

    I’ll be thinking of you and thank YOU for not losing HOPE. Bon Courage, Peace, Gisele

  2. March 6, 2011 5:01 am

    Yoyoyoyo…*shocked*… and i thought South Africa was bad, so much systems, procedures and regulations, my head is spinning from all these organisations you just mentioned. Love I can only imagine what you going through and its seems all stressing and painful. hang in there love, and i understand overseas, you get the best quality of medication, and buying your own medication is no joke. I was on the governmnent system, well with us down here, its very easy accessable, very proud of our Govt, hence people don’t take the initiative to actually visit clinics and get help. You get tested, attend classes and start your medications. HOWEVER the issues are the medication is very, very low quality, well apparently because of lack of funds from the Government, yes it helps but hhayi khona (no ways) never, there are lots of side effects, I can mention few but which led me to just leave the system and buy my medication as i wanted the best and to try and get rid of side effects. IT IS FINANCIALLY STRAINING especially if you young, and i kept lying to myself that my LIFE has to come first, but NO, i still consider myself young and still need to live life to the fullest but am limited because of financial reasons now, which most goes to my medication. All that said, what am trying to say is you need to think carefull before taking my route of giving up all those benefits. It is very much possible, I am managing well but depressing at the same time. but then again i took the decision because of bad quality of medication, here in South Africa, that is Florida….take care love mncwaaaaa….*kiss kiss from ma daughter as well*…

  3. joy permalink
    May 28, 2011 12:29 pm

    Dear lovinglife,

    when i read about what your going through i thank God for my blessings. In Uganda where i live we dont have to go through all that. My drugs are free and i get a refill every two months. I cant speak for the quality but so far so good i haven’t had any side effects since i started taking Niverapine and Truvada about 2 years ago and i thank God for that. I hope to come to the US in a few months but what am reading is scary. My prayer is all will be well and i encourage you to continue to be strong. I am also believing that by the time i come to live in the US things will be better.

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