$5700/month for valbenazine

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My health insurance was recently cancelled by the government.  HealthCare.gov sent me a letter encouraging me to call them.  When I did, the woman I spoke to informed me that I have Medicare Part A (hospital insurance) and that my Medicare coverage overlapped with my Highmark Blue Cross/Blue Shield coverage which I paid for each month (using my monthly government subsidy).  She told me she would be canceling my Highmark BCBS coverage and even though I protested, that’s exactly what she did.  I asked if instead we could cancel my Medicare Part A and she informed me that I could not cancel my Medicare Part A without also canceling my disability income—unless I give up my only income, the only choice was for her to cancel my Blue Cross/Blue Shield.

I applied for Medicare Part B (health insurance) and was rejected because I applied outside the acceptable period.  I’ve been told that after two years on disability Medicare Part B will be automatically added to my benefits.  I’ve been on disability for almost three years and this has never happened.  Now I have no health insurance.  The only way I can get my prescriptions is through an emergency prescription program.  My prescription costs have gone up by a factor of 10—from an affordable level to an almost unaffordable level.

There is a new medication, valbenazine, which was specifically designed to address tardive dystonia, which is a disorder of uncontrollable movements like Parkinson’s disease.  I got this condition as a side effect of a medicine I was prescribed in a hospital.  It is a permanent condition.  Last month I was able to try valbenazine (as a sample) and it helps somewhat.  My psych doctor is trying to get me more samples.  This medicine is not covered by my emergency prescription card.  It is not covered by Medicare Part B—which I don’t even have.  The cost of one month of valbenazine without insurance is $5700.

That is more than twice my disability income.  Even if I was making what I made when I was a software engineer, the $5700 price tag would be prohibitive.  That amount is more than three times the maximum amount I have ever paid for rent—it is 10 times what I currently pay for rent.  That price tag, combined with my now having no insurance, means that unless my psych doctor can get me samples, there’s no way I can pay for the medicine.  What is the point of pricing a medicine so high?  (Please: if you know: tell me.)

I’m not complaining.  I am explaining.  I’m doing ok.  I have disability income to offset the fact that software companies (or other companies) will not hire me with bipolar-type schizoaffective disorder and that I can’t sit up, walk, stand or move normally due to tardive dystonia.  The local health clinic helps me and I pay them on a sliding scale.  I’m glad to live in a place where I have such help.  My life is full.  I live with my girlfriend.  We live a simple, mostly peaceful, inexpensive life.  I am not asking for anything to change.

What I am doing is painting a picture for you.  I am asking you why such details are the way they are.  I am asking you to understand my position.  I am asking you what sense it makes to price a drug at $5700/month.  Who can afford that?  What insurance would I have to have to get ahold of that drug?  I am shaking my head.  This is senseless to me.

And even more broadly: as a society, as a species, why is this the way we do things?  Why don’t we help each other when we need help?  I used to work with Anthem Blue Cross/Blue Shield—I helped them build their software systems.  Now I am in need of health care and I cannot get it.  I have to laugh at that.  I help people do things when I can.  I would like to see us all do that.

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