It is costly to be visually disabled.

I have really been struggling lately with the sheer cost of adaptation and assistive technology for the low vision and blind.  I am trying desperately not to whine, and to be grateful for everything that I have been able to purchase and the training I have received.  I am very grateful.  However, when I attend low vision support groups and there are folks in there who are retired on a fixed income I wonder how much they just give up because financially it is just not feasible.

There have been some amazing leaps in technology that have been a wonderful resource for the low vision.  There was a time (and still is for some) when people carried around several different tools to help them in their everyday life to help with low vision.  Now with the onslaught of iPhones and smartphones, these devices are able to do the job of a whole conglomeration of assistive tools.  Which is wonderful, however, it comes with a pretty hefty price tag.

I think what gets me down about it is that for a lot of people having a Smartphone is either for work or because it is cool to have, AND they have the disposable income to justify the cost.  However, living on a budget and trying to keep cost at a minimum, it is really hard to justify a Smartphone that costs to the tune of $200/month just so one could have all the bells and whistles that helps the low vision.   

I have always had to pay for really good health insurance, with a big price tag because I absolutely have to make sure that my eye disease and its treatments are covered.  When there are treatments out there that for just the drug alone can run almost 3K per dose, you can’t skimp on insurance.  When I had PDT treatments we had to pay upfront some $2800 and hope that the insurance would reimburse.  Luckily, our insurance at the time did reimburse and we got the money back.  However, who knows when the day will come that the treatment falls outside of plan benefits and then things will get ugly. Luckily right now Avastin is working and costs only $50/dose.  However, when the day comes it stops we are looking at all alternative drugs running close to 3K per dose. 

The bummer is I have a rare disease that isn’t really even acknowledged let alone recognized, so it is easy for insurance to say “not covered”.  Whereas a condition like Age Related Macular Degeneration (AMD) is widespread, recognized, and heavily covered. We can’t really have all our retirees going blind because they are on a fixed income and can’t afford treatments.  But for that 0.7% of us who have POHS there just isn’t the volume of a collective voice that could get the insurance companies attention.

I hear of folks paying exorbitant prices for medication, treatment, and doctor visits.  Others pay steeply for insurance.  There are times when I look at my CCTV and think, wow I could have gone to the Bahamas for that price. Unless I don’t want to be able to do basic tasks and get trained up so that one day I could reenter the work force, the Bahamas will just have to wait.