Knowing it’s no fun to be blindsided by medical unavailability, I decided to be the point man, take the 77E and move out ahead. What I found at my VA Medical Center is cause for immense concern. VAMCs have been instructed to triage Hepatitis C Veterans and allow only the sickest inside the wire. The ARPN explained that this was necessary due to the high cost of the drug and it’s “unavailability” as yet.
So let’s investigate the findings. First off, to my intense concern, I was asked why I kept referring to it as Sovaldi. My “hepatologist” Eileen Hansen, corrected my mistake and told me it is called Sofosbuvir. Sofosbuvir went out in December when it went to market but I guess this email didn’t hit Eileen’s desk. Calling it Sofosbuvir now is like calling Valium Diazepam. Huh? Using the VARO-Who’s Who function at the top of the page, I “googled Eileen to make sure she wasn’t a chowderhead FNG. Nope. She’s a top of line ARNP and professes to be a designated specialist in this field. What is truly odd is that I have never met the shadow doctor behind her. She’s a ARNP and not permitted to operate without supervision. It’s a damn good thing, too. As for unavailability, I suppose q-tips were in the same category when they first came out.
Put your cursor on it and left click to enlarge the above. No need for a magnifying glass. Yessiree, Bob. She’s not a bedpan changer at $102 K. After having dealt with her on and off for over six years, I always find it amazing that every time we meet, she has no recollection of dealing with me-ever. After my Interferon misadventure in 2007, she tried to put me on the triple-drug Vertex (Victrelis) cocktail in 2011 even though the records clearly stated I was allergic to it. That’s why they call it “practicing medicine” rather than “performing”.
When we last talked in 2012, she informed me that if any new technology/treatment came up, I’d be the first to know of it. VA treats their 100% disabled with great care. I heard nothing all this time other than pleas to let them run the butt tractor (colonoscopy) up my derriere and take a peak. Next, it was a desire to run one down my throat and take pictures of my esophagus. They have two biopsies of the liver box already but still want another one. Why they feel the need to be paparazzi and photograph my insides to death is a mystery. The last time I let them go into my abdomen, they screwed it up and used it as an excuse to keep me a year and let the Doogie Howsers practice on me..
When we met yesterday, she was excited to tell me if I was lucky and didn’t get bumped like someone on standby for a flight, I would be in the running for one of the prized
Sovaldi Sofosbuvir slots next spring in 2015. She also asked if I’d be interested in a drug trial of Olysio and Interferon at Virginia Mason Hospital in the meantime. I had to break the bad news yet again and explain for the third time that Interferon wasn’t in the cards. Five minutes later in the same conversation, Eileen made sure I knew that I should always be careful and let other doctors know I had a bad experience with Interferon and it was not an option for me. Perhaps a medical ID bracelet?
This is what we are dealing with at the VHA. Sovaldi will not be available to the masses for quite some time. If it is, it will be predicated on your being Stage 4 with at least a confirmation of fibrosis by ultrasound or core biopsy. If you ain’t dying, they ain’t buying in Seattle.
Because we are so trusted and considered salt of the earth, the VA has elected to entrust us with a maximum of a one-week supply of Sovaldi at any given time. This will then entail four trips a month at 33 miles one-way to pick up the medication. They absolutely will not mail it as they do morphine and all the other Schedule II narcotics I used to get. Since it is not a doctor’s appointment, no travel pay will be forthcoming. After the first month, if you have not been caught selling this valuable medication on the open market, VA will allow you to pick up a two-week supply and cut your trips down to two a month.
I have genotype 3A which requires the longest to cure at 24 weeks. Nurse Hansen was quick to point out that VA was being mighty generous to even consider doing this for me when you realize it costs $1000.00 a pill. Oh, yes. That was reiterated five times. If, on the off chance the ultrasound did reveal any nastiness, why, I might be able to get into the next cohort of ten lucky lotto winners. Due to the immense costs to the VHA, there was absolutely no way to accommodate all the infected souls. Seattle is running them through at 10 souls every 16 weeks. I was going to point out there were 52 weeks a year and at 16 -week intervals that would add up to —well, never mind. It’s probably VA math. Considering there are over a gazillion Vets with HCV, using the triage method, those of you at Stage 2 should be able to get Sovaldi before you need a transplant 20 years from now.
So, in summary, if your are deathly ill, you get to move to the front of the line– in ten-person/sixteen week intervals. Except for those of us on 24-week intervals. If you are eligible, there are trials available but you have to ask regularly to find out. VA is not mailing out reminders. The waiting list is out the door and around the block. The VHA’s purse is being sorely tried over this high-priced drug so we have to understand that they cannot serve everyone. We should be grateful that we are even being allowed access to it considering the VA is low on bucks. So much for cutting-edge Veterans care. For he who shall have borne the battle–unless it costs a shitpile.
I was going to ask her how they can afford to give out those humongous bonuses to the VISN heads of $25,000.00 each year if they are so strapped financially. I decided against it. You notice Eileen’s employment info above shows she didn’t get a bonus last year so there’s no use rubbing salt in that wound. She should be pissed she got the shaft.
If you have access to Medicare, I think the smart money is to go there. They trust you not to sell the pills but how in Sam Hill could you (or would you) put that on Craigslist?
12-week Supply of Sovaldi (Sofosbuvir-Gilead Sciences Corp.) Regular price- $1000.00/pill. $500.00 each OBO. See “Bob” at Wright Park in Tacoma on Tuesdays at noon at the NW corner. Codeword is “Swordfish”. No dealer inquiries. Cash only. Volume deals available on request depending on availability.
I guess you folks realize no one would ever go out on the little branches and tell this to you if you called up to inquire about the availability. This is why I went in and played dumb. You have no idea how difficult that charade is for a former Mensa member.
Please tell us if you have been accepted by VA and are currently being treated by them with Sovaldi or Sofosbuvir (same drug according to everyone but VA). It has come to our attention that the VHA may be offering lollipops with no “lolli” on the stick. I was told Monday during my indoctrination that I would have to eat five (5) ribivirin pills per day if, and when, I began txment next year. Furthermore, if my weight increased above 165 lbs, it would have to increase to six. I am currently 154. Since most I have talked to took only two (once in the morning and evening) in prior txments, I suspect we are getting the anal smoke therapy.
Obviously, if no one is getting the Sovaldi, then VA is once again saying one thing and offering nothing. Please set us straight. Have you or anyone you know received any of this medication or are you slated to get it in the near-term of the next month or two? VA and the VHA are not in the habit of “rationing” treatment for any disease so this would be an anomaly of the highest magnitude. Having dealt with VA for a number of years, I strongly suspect this is a public relations ploy. The details are too sketchy, the Ribivirin dosage is exorbitant and only ten souls per 12 weeks are slotted in. This dog doesn’t hunt.