Understanding the Expenses of Macular Degeneration
Last updated: November 2022
I was reminded the other day of some of the additional costs of living with macular degeneration. I had been shopping for a battery for my portable lighted magnifier, when I started thinking about all the little, and not so little, extra costs of this sight stealing condition.
Macular degeneration expenses
Not only do we have the direct costs of medical care, but also the less direct costs. Costs for better lighting. Costs for transportation. Perhaps already costs for assisted-living tools or technologies such as a CCTV. Maybe it’s ordering groceries online, and paying for the privilege. Everything from batteries to a big purchase like a CCTV. The recommended AREDS supplements twice a day quickly adds up.
The emotional toll of vision loss
Then there’s the emotional cost. That could be never-ending. For some of us, there’s an emotional and financial drain on our families as well. We may find that therapy is well worth whatever it costs.
The cost of medical visits
In some places, the cost of a visit to an ophthalmologist can set us back. Next, the cost of the retinal specialist. Then maybe the big one. The dreaded eye injections. A cost that could be every four weeks or so indefinitely if we develop the advanced neovascular form.
Regular eye exams
When I went for my annual eye exam with an optometrist a few years ago wanting a prescription for new glasses, I paid the charge out of pocket. After the unexpected diagnosis of wet AMD, he referred me to my amazing retinal specialist. From then on, my provincial healthcare plan has covered the costs. I started with regular four week injections and slowly extended them to 12 weeks. I’ve been on Avastin, which has been working well, as it has allowed me to be on that 12 week schedule. Avastin is usually the first anti-VEGF tried, as it’s much less expensive than the others.
Differences in healthcare coverage
I am very lucky that here in Canada those medical costs are covered. It’s not perfect, and sometimes slower on the uptake approving new treatments, but it covers all I could ask for and is paid for with our taxes.
From what I can determine, many others in our online community also have some form of Medicare, Medicaid, or insurance covers a large portion (or all) of those costs, perhaps with a small copayment. The drug companies themselves may help with costs for those who need it.
Information on that is available at through these links:
Paying for the indirect costs of central vision loss
If our macular degeneration progresses to any central vision loss, we have the added costs of paying to have jobs done that we could easily do ourselves before this life-altering diagnosis. Perhaps a gardener, a seamstress, or maybe we used to do our own home repairs and now need to pay a handyman.
Travel, technology, and more
Taxis. Buses. Lighting. Perhaps even moving to a more accessible location. Technology. Apps. Smart phones. The necessary sunglasses. Some of these “extras” that we now need with our diminished eyesight can be very expensive, while others just seem to add that little bit extra that seems never ending.
Have you discovered you’re now paying more just to keep living the way you did before your diagnosis? Or do you have any suggestions that could help us keep these costs down?
Do you find that fear interferes with your ability to regularly go to eye specialist appointments?