A couple of cures for blindness and a new one enters human trials!

This is pure awesome! I'm personally interested as I have a condition called epiretinal membrane that, if it gets seriously worse, will mean that I will no longer be able to see straight lines. Don't tell me that won't screw me up as a photographer! And I have no idea how that will affect my ability to read, and photography, reading, and watching movies are some of my major joys in life.

ANYWAY, this article from the BBC talks about a new gene therapy that just began human trials that, if successful, will STOP age-related macular degeneration (AMD). AMD is a genetic condition that will ultimately result in blindness, this treatment involves injecting a virus into the back of the eye which (I guess) re-writes the bad gene and prevents it from doing its dirty deed. They're testing it on people already suffering from AMD, I guess so they can quantitatively see that it works by seeing that their vision doesn't get worse.

The article goes on to talk about two other causes of blindness that can be treated: something called choroideremia, a genetic problem which affects young men and eventually causes total blindness. They now have a genetic treatment for it. And a stem cell treatment for people where they can directly implant patches of stem cells in the eye and have restored vision in two people.

In my case, there is a treatment for epiretinal membrane, but it is extremely high risk: they literally scrape the unwanted membrane off the retina. Obviously the risk of physically damaging the retina is considerable, so it's not a recommended procedure, and I'm not remotely near that level. I'm about as early in the disease's progression as possible: they've detected it, I'm being monitored, and I'm not seeing any distortion of straight lines right now, so it'll be some time (we hope!) before it becomes a problem.

As if I don't have enough medical shit in my life to deal with! :-)

There are no words for how much I HATE mail order pharmacies!

Perhaps my hatred should be spewed upon our medical insurance plan, I don't know.

Back in November, my lung doctor switched me from an inhaler to the nebulized form of the drugs contained in the inhaler. It would have been quite a money saver: the inhaler over the counter was $90 a month, except after 3 fills the price went up. I had to switch to filling it via mail, and the price went from $90 a month to ZERO. How it can do that, I do not know.

The two drugs, from my local pharma, were $6 apiece monthly. No sweat.

Except January 1, one of them was removed from the insurance plan formulary.

It was replaced with a pretty much identical drug, except this one, from the same pharmacy, was $140 a month.

That I cannot afford.

The other drug remained $6 a month.

So I try - emphasis on TRY - to arrange for the two drugs to be supplied via mail order.

I prefer to get my drugs locally so at least my money is circulating locally and supporting local jobs and the local tax base. I have spewed about this before. But I can't afford a bill like this! So I call the lung doctor's office to tell them to send a 90 day script for the two drugs to the mail order pharmacy. I hear nothing back from them or the pharmacy. Couple of days later I call again. Still nada. Finally I go online through the patient portal and go through the Order Refills process, with an explicit note explaining what's going on.

NOW the mail order pharma gets an order.

For the $6 drug.

Try to contact lung doctor's office again. No joy. Try patient portal again. Mail order pharma gets an order! I get an email saying the order is in progress! I call them to confirm things - price seems right, except it's for a 30 days supply.

For $170.

A 90 day supply is also $170.

So THIS TIME the pharma faxes the lung doctor to get the script updated to a 90 day supply, because if I could afford $170 a month, I'd be paying $140 a month at my friendly neighborhood drug supplier. I also send them a note explaining things through the patient portal, since that seems to be the only way to get them to understand things.

Finally Friday, last week, I get a notification that the script is in process.

Except we're leaving Tuesday - tomorrow - for Phoenix.

So I call them with explicit instructions to ship it to my parent's house.

No problem, I'm told. It will reset the processing process, but since it's at stage 1 of 3, and it's a pre-packaged drug that they just need to get the box off the shelf and slap a label on it, no big deal. But they're not processing on Monday because of the holiday, it'll probably ship on Tuesday or Wednesday and I'll get it Wednesday or Thursday in Phoenix.

OK, all is good.

This evening Russet and I go to a nice little sandwich shop in Cloudcroft for dinner, and I get back and check email, and there's one from UPS saying that I'm to expect a delivery TUESDAY. Not a shipping notification from the pharma, but a delivery notification from UPS. To the Cloudcroft address.

The ultimate irony? It's shipping from Tempe, Arizona. I could have driven to their loading dock on Wednesday and picked it up!

I call the pharma, and there is absolutely no record of my parent's address in the system. None. I should have asked if there was any record of me calling on Friday. I asked her flat-out if the calls are actually recorded, she said yes. I said I want a supervisor to pull my call and find out what happened. I don't want anyone disciplined, but something fell through the crack big-time and it's caused me a HUGE amount of stress, it could delay our going to Phoenix by a day, which means we lose a day of vacation, which is inconvenient in the extreme, especially since we don't have much in the way of food in the house.

*sigh*

First we kill all the lawyers, may I humbly suggest the insurance people for the second wave?

What I REALLY want to know is WTF did the insurance plan have to drop the $6 drug! That'll be a phone call for tomorrow. I read an article about American medical tourism where a pharmacy plan in UTAH, of all places, is paying for plan members who need ten specific drugs, they'll fly these people to San Diego, with a companion, put them up in a hotel, then drive them to a specific hospital in Tijuana, Mexico, for them to be dispensed this drug in a 90 day supply. That's four trips for two to Mexico a year if you're on one of these drugs.

Something has to be done. Ridiculous doesn't come close to describing how stupid this system is.