r/maculardegeneration

I just finished my first session of nine treatments for PDM Veleda light therapy. I don’t have my results back yet. I have to wait four weeks.
What have your results been?

Is anyone currently in a clinical trial for dry AMD? I was in a clinical trial last year, but it was canceled January 2025 and I just found out I was taking the real medication and it did stop the progression. I’m trying to find the drug I was on. I know it’s not approved in the US. It was an oral medication from cognitive pharmaceuticals.

I’ve been going back and forth for months with my 74-year-old father’s retina office regarding Eylea injection copays and honestly wanted to hear if others have dealt with similar healthcare billing situations.

My father has Medicare and receives regular retina injections. Last year, Good Days suddenly stopped covering the copays and we started receiving bills totaling over $2k because Medicare still leaves large coinsurance amounts for these injections ($300–$400 each visit).

After a ton of research/calls on my own, I eventually enrolled him into other copay assistance programs. One wouldn’t cover retroactive claims at all while another had a limited lookback period so only part of the year qualified.

The frustrating part is the retina office billing department has been extremely disorganized throughout this process. The front desk and physician are nice, but billing has been difficult to work with. At one point billing literally told me “that program doesn’t exist” regarding a legitimate copay foundation.

I ended up submitting claims myself through the assistance portal because the office wasn’t submitting them despite repeated follow-ups. Then the assistance program told me the office submitted the WRONG diagnosis date, which prevented reimbursement for earlier claims. They re-faxed the form, and somehow the office submitted an incorrect diagnosis date againso now it’s being faxed a third time 😭

Most recently, during a visit, the physician told us they had to use sample Eylea injections because prior authorization had expired and wasn’t renewed in time. However, I later see a claim still submitted to insurance for the medication. In prior visits where “samples” were supposedly used, we still ended up with charges too.

At this point I honestly don’t know:

* whether this is normal billing incompetence
* if retina offices commonly struggle with assistance programs
* or whether I should be escalating this further

Has anyone dealt with similar issues involving retina injections/copay foundations/sample medication billing? Any advice on how to handle this situation effectively?

I've looked this up already but I'd like to know some first hand experiences to try to better prepare for any adverse effect. My mother has an appointment with a Retina specialist. Her optometrist thinks she has wet macular degeneration but it has to be confirmed by the specialist.

She might get an injection. I'm wondering what signs to look for in the event of an infection or any other side effect. From what I've read so far, there will be some discomfort for the first couple of days and possibly some blurriness for several hours after the injection.

How would I know if there are any serious side effects such as damage to the retina or anything else?

Some providers are using these now but I know others think the risks outweigh the benefits. I’m wondering if the research evidence is getting stronger one way or the other