Brother, can you spare a spinal?

Remember this?

I called on Wednesday, got voicemail, left a message. I did not hear back Wednesday or Thursday so, as you might expect, I called this morning. Betsy Mosmiller answered the phone on the second ring. She thanked me for calling and advised that Johns Hopkins was unable to enroll ALS patients because of cerebral spinal fluid (CSF) limitations. As it happens, the Biomarker Study people were going to pay $200 for each lumbar tap; $100 to Hopkins and $100 to the patient. But Hopkins charges $300 for this procedure, so there is a $200 deficit. I asked if Hopkins wouldn't be willing to waive the fee. I was told no. I said I would be willing to give up the $100 stipend. Still no. I understand that Betsy is not making these decisions, but I expressed my frustration and disappointment to her anyway. I explained that I have decent health insurance that might cover this procedure and asked if that would be acceptable. In my mind, it's crap like this nickel and dime mentality that are the real stumbling blocks to finding any sort of solution to ALS. Betsy said she would relay all of my comments and concerns to the organizers. Perhaps there is a way I can still contribute the plasma/DNA.

I wonder how much money was spent discovering a cure for erectile dysfunction.

Betsy did throw me a bit of a bone: they are doing skin cell studies at Hopkins. I offered to provide some of mine. She said the procedure is very simple -- very similar to having a mole removed -- but that there would be a little bit of scarring. I laughed and told her scarring was the least of my concerns.

Sigh.