What Vision (Loss) Costs

What would you pay for sight? No, this is not a philosophical question with the easy answer being sight is “priceless” or “ I would pay whatever it would take." This is an economics question looking for answers in dollars and cents, greenbacks, coin of the realm.

Valuing vision

This question is not currently relevant for patients with age-related macular degeneration. We are not at a place in research that there is really anything to buy. At least nothing at all that will treat dry AMD and nothing that will actually cure either wet or dry AMD.

However, the day is coming when a cure will be available. Then the question may have relevance. What would you pay to have your sight?

Conceptualizing the research and value of sight

Back in 2017, the parents of children with a rare genetic disorder faced an even harder question, a question being put to them in all seriousness. What would it be worth for your child to have sight? How much money would you pay so that he could see?

The cost of new treatments

It was in 2017 that a Philadelphia company, Sparks, came up with a one-time treatment cure for biallelic RPE65 mutation-associated retinal dystrophy. This condition is extremely rare and inevitably blinding for children with the mutation. It was phenomenal! Sparks pioneered the gene therapy, and it became one of the first gene therapy treatments to be FDA approved. The problem with this whole thing was the cost.

The treatment costs $425,000 per eye or $850,000 per kid.

Affording treatment payments

Now, before you start badmouthing Sparks, I need to tell you they have been trying to make it easier for families. They have proposed payment plans and their version of “money-back guarantees." They have also tried to strike deals with insurance companies and other payers.

Paying for continued research

The problem is Sparks has millions if not billions invested in this research. They are a for-profit company with investors. From a business perspective, that $850,000 is probably a bargain-basement price. They need to be paid. Bankrupt the researchers, and research ends. It really is not smart to kill the goose that laid the golden egg.

A philosophical perspective

It is very hard to determine what the value of sight is in cold, hard currency. There are so many other factors that must be considered. The gene therapy developed by Sparks is for children. If a child were given sight, what potential would that unlock? Might she become the next Picasso, a medical researcher or President of the United States? We have no idea. Just the same, do we want to take the chance of losing that potential for a lousy $850,000?

Of course, those of us of a “certain age” will probably not go on to be the next great creative geniuses or world leaders. Your yet-to-be-tapped potential may not be what it once was. That said, is there an argument for spending lavish sums to save or restore your sight? Would the government save money on your care? Would you be able to work longer and be more productive? Or maybe the answer to high costs would be yard sales and/or crowdfunding. A DIY answer that would not require you to deal with the powers that be.

The future of treatment

Do I think the eventual treatments and cures for AMD will be $850,000 a “kid”? Not really. But I do think that as the population grows and ages and medical science finds more - and more involved - ways of dealing with our ailments, choices about prices and funding will need to be made.

Which brings me back to my question. What would you pay for sight?