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Living On The Edge Of Death – Michael Adam Weinberg

I never know when the plug will be pulled.

I am Medicaid dependent.

My body is chemically addicted to non-anabolic steroids from 12 years of use.

I am dependent on a very expensive drug to maintain my current level of strength and best 10 year improvement of my auto immune condition called Myasthenia Gravis.

But recent shortages of IVIG, a treatment I received prior to my current regiment of Soliris, every two weeks, are haunting.

People who need this treatment to remain quasi-healthy, to avoid crisis and complications that cause death are being denied. Often, people requiring this to live are being denied these medications, such as IVIG, in favor of people who need this electively.

And so, I live on edge. I live in fear.

I fear a day when the doctor, or insurance, or institution deny my receipt of Soliris, or any other medication.

I fear the day the drug cost, already nearly a million dollars per year, spikes.

I fear the day the market collapses, Medicaid is denied, health insurance is re structured, causing havoc, or the drug is approved for additional conditions and shortages begin.

I fear the result, the consequences, the drama, the cost of which I will bear the brunt: an agony and suffering-filled and life threatening spiral into crisis. If my experience is anything similar to the crises I have already experienced it will be horrible. Each time it is with repercussions and short term and long term damage.

All due to money, algorithms, administrator choices, logistics, and chance.

Or luck.

The time will come when luck runs out.

The time will come when I cannot recover.

The problem is, I am having a difficult time living with this truth.

It is living on a precipice.

It is living on an edge.

It is living on the edge of death.


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