Skip to main content

Expensive but affordable

There's no denying it. Tolvaptan - brand name Jynarque - is CRAZY expensive.

The wholesale price is just north of $13,000... A MONTH!

Dear God.

I've searched and searched to find out how much pharmacies are beings charged for the drug, as well as my insurance company, but I've yet to find a source. Surely there has to be some kind of 'negotiated price' like you see with healthcare?!?

My doctor suggested increasing my dosage - after I'd already received the next month's supply - and I about hyperventilated. There's no returning drugs and the thought of wasting $13,000 of pills left me queasy. So instead, we decided that I'd stay on the lower dose for another month and then increase the dose the next time. Deep breaths...

Regardless, Otsuka (manufacturer of the drug) is working to make sure that the patients' out of pocket for the drug is manageable.


Through their MyPASS program, patients with commercial insurance can acquire the prescription for a $10 monthly copay which breaks down to $2.50 a month. That's less than what it costs for a 'fancy' coffee!

So, for instance, I believe that my insurance company says my co-pay for a specialty drug like Tolvaptan is $95 a month (still a bargain). Once I knew that my prescription had been approved by my insurance company, I went to Otsuka's Co-pay Support page and signed up for MyPASS. When Avella called to schedule my first delivery, they already had my information on file and with ABSOLUTELY NO HASSLE I was invoiced $10.

Easy peasey.

I've heard grumblings from members of the Tolvaptan Community that it doesn't work quite as smoothly for one of the other specialty pharmacies, but since I have no experience with the others I'll let them speak for themselves.

I'm not sure how long this co-payment supplement will last, but I'm grateful for as long as it does.

Comments

Most Read

And so it begins

At my last appointment, the nephrologist actually offered to give me a referral for transplant. And then a week later I got THIS in the mail from my insurance company. Crap! It's getting real now. If something like that doesn't take the wind out of your sails, I don't know what will. Granted I had let my doctor know a couple of months ago that I wanted to be screened and ready to go as soon as my eGFR hit 20. Did I think it would be this year? No. My estimates were three years from now. Yet the combination of the four point eGFR drop + the transplant referral leads me to believe that my DOCTOR believes I should hit 20 within the year. I don't think I'm going to be able to last until the artificial kidney comes out. :-(

Words to live by

I never knew - couldn't even fathom - how tough it is to live with a chronic disease. Sure I've been hypothyroid for YEARS but it never really felt serious. I take a little pill once a day. There are no side effects. I get my energy back. Good and good. Polycystic Kidney Disease is nothing like that. There is no cure - save transplant. But even then you take anti-rejection drugs for life. If you forget your meds, you risk transplant rejection. How's that for adding a little anxiety to your anxiety? There is a single drug that SLOWS DOWN the disease's progression, but that promise of dialysis and/or transplant is always right over the horizon. The side effects of that drug are constant thirst and the knowledge of every public rest room within a hundred miles. And while you wait for the disease to progress, you get to experience soul draining fatigue, anxiety, physical discomfort as your kidneys expand to fill your abdominal cavity, the look of a pregnant belly (...

What a night!

Tues Apr 2 2019 - Oh dear God! What a night! That plant? Yeah. Could have been me. Not taking my second dose until 530pm? Never going to happen again. Wow. Just wow. I woke up every 90 minutes. I went to the bathroom every 90 minutes. I GUZZLED water every 90 minutes. I felt like I was traversing a desert and hadn't had a drink in days. I drank three liters (about 3/4 of a gallon) of water DURING THE NIGHT! Who does that?!? So here are my learnings from my first day & night on Tolvaptan: Don't take the meds late - make sure I get that first dose in at 6am and that second dose in at 2pm, Start building up that bladder durability during the day. Act like it's strength training. Feel the urge and delay going as long as is feasible (accidents are not an option). Hopefully this will allow me to sleep longer than 90 minutes. If I'm going to drink that much water, I'm prepping it before going to bed and having it bed side. Last night I was running up...

Teach us to fish

I've recently started trying to educate myself on current research and insights around PKD and all the diseases that seem to show up along with it.  While it's exciting to learn that we're on the verge of significant innovation in how CKD and PKD are diagnosed and treated, I find myself a bit disappointed. Instead of shouting the news from the roof tops... instead of spreading the excitement, the medical community hides the punchline. They share their findings in dry journal articles, steeped in language that is hard to understand. I realize the audience for the articles is not Joe or Jane Public. I realize that they're scholarly discussions of research methodology, statistics, inference and conclusion. I also realize that this is potentially a single data point that may, or may not, contradict current beliefs. Regardless, wouldn't it be nice if these studies included a simply worded summary of the work? Something easily consumable by the general pu...

Round 2 deja vu

My doctor decided to keep me at the initial 45/15 mg dose for another months so I'm anticipating a similar water consumption. Here are the first four of seven (?) or eight (?) five gallon bottles of water. My local grocery store has a water bottle fill station for an extremely reasonable 39 cents a gallon. The frugal side of me thinks I should invest in reusable water bottles and take advantage of the savings. The lazy side of me thinks that it'd be a total hassle to wash the bottles, keep bugs and dust from falling into them before I'm able to refill them, remember to take them with me to the store (I can't even remember those reusable shopping bags) and then stockpile a source of bottle caps. It's just so much easier to buy these recyclable five gallon bottles. Lazy beats frugal.