Question about starting Harvoni

[HCVinIL]

For those of you who have used Harvoni, did you have to meet with your doctor's nurse or get any kind of special instructions prior to taking your first pill?

To give you a little background here I found out I had Hep C around 5/2016 through an anonymous online std test.  At the time I had no insurance so I did a ton of research into the disease and through a special circumstance I was able to get insurance coverage on 7/1.  Testing with my pcp confirmed the HCV and I was referred to an infectious disease specialist and that took two months.  FibroTest showed that I was an F4/A3 and based on that Health Alliance pretty much immediately approved my meds.  I was told by the nurse once I received the meds to contact them and they would "squeeze" me in for an appointment prior to starting the medication so yesterday I received it and they made an appointment for over a week away to meet with the nurse for "teaching"?!?

I personally think my doctor is way too busy but there really isn't much I can do at this point as there aren't many other choices in my area.  It just seems ridiculous to me that I now have to wait over a week to start the meds just so they can bill me for this special "teaching".  I'm an IT consultant by day and I've done quite a bit of research into the disease, Harvoni, the side effects, what medications it interacts with, etc. and I just cannot imagine what it is that they need me to wait for.  At this point I am half tempted to just start taking it on my own.  Thoughts?

[Luna7]

HCVinIL,

I also wanted to start treatment quickly as I needed to start feeling better asap due to an upcoming trip to CA to help my daughter after her surgery. There was the potential of my first bottle of meds arriving after the Dr's closing time on Friday but I did not want to wait until Monday to begin. The Dr's nurse said I MUST wait until they talk to me before I could begin. I thought it was rather ridiculous, but fortunately the meds arrived earlier in the afternoon so I could call before the weekend, and she had me read the labels and tell her the color/numbers of the meds. This made me wonder if sometimes people got the wrong pills sent by these specialty pharmacies?? Or do they feel the specialty pharmacies are an annoyance in other ways and so feel a need to exert some control over the process?

Whatever, I'm not sure if I would have started them anyway had my Dr's office been closed. One can look online to make sure they have the right meds (there are photos). I feel they should have told me if sometimes the wrong meds are sent, but instead they seemed to trust I would follow their instructions once telling me that I MUST call them.

Anyway, do find out the consequences should you go against their instructions. During another confrontation with them they said if I didn't follow their protocol regarding subsequent testing they might refuse to treat me. So there I was in San Francisco, hobbling around due to a bum knee (that the DAA's most likely caused), juggling a newborn baby, my daughter who just had brain surgery, and her annoying husband...and I'm supposed to find labs that my insurance company accepts in a huge city I'm not familiar with?  Finally I just said 'forget it'.

Strangely, my Dr. said all these excessive tests were required or insurance could cancel my meds. I called my insurance and they said all these tests weren't required. I have yet to figure this one out.

Also, my insurance company has cancelled me at the end of the year due to spending too much money on me (though I will get another plan under the ACA there is only one other insurance company in my area, and who knows what their benefits are like, which is especially disconcerting if I would need re-treatment).
So excessive testing/Dr. appointments is something people need to be aware of and perhaps minimize as much as possible if receiving ACA health insurance.

Surely they can instruct you over the phone so you can begin sooner?  Good luck...

[HCVinIL]

Wow, your issues make my reasoning to start early seem pretty petty!

Unfortunately the nurse didn't seem willing to do it over the phone.  I can only imagine that they feel they need to talk to me because I've previously taken Zantac on occasion but I understand that Harvoini needs stomach acid to work and I simply won't use it while I'm on the Harvoni.  I've confirmed online that the bottle, pill color and number are the legit pills.  Even though I'm an F4 my ultrasound didn't show anything at all wrong with my liver and I have no symptoms.  Have no other ailments.  Don't take any medications and am not allergic to anything medicine or otherwise.  Am really active, physically in shape and eat healthy. 

At this point waiting just seems silly to me but I've been known to be stubborn...

[FutureThinker]

Hi HCVinIL and welcome to the forum!  I treated for 12 weeks w/ Harvoni.  My hepatologist had been following me for nearly 5 years, so we had a relationship prior to me getting approved for Harvoni.  My situation, when I finally got approval (had to take my insurance denials to my state insurance board!), was that the department's HCV Coordinator told me not to take the medicine UNTIL we talked, and to call her once the drug had arrived.  I called and we talked, primarily for her to be certain of what prescription or supplemental drugs I was taking prior to that first pill, to review possible side effects, verify what not to do, and answer any questions.  I then had my next doctor apt after my 4 week labs.

You should also be getting a specialty pharmacist on your case, and they can answer a lot of questions, too. In my case, the pharmacist and doctor office worked together in concert. 

One more week isn't going to make or break your success w/ treatment, so I think I would wait.  However, this is a personal decision. Hope this helps, FT

[gnatcatcher]

HCVinIL, what you describe is common practice. Like you, I self-educate and could have gotten along fine without the teaching session, but one way it was useful was that I learned their schedule on when tests would be done to check my liver enzymes and viral load, and when I'd have F/U appointments. The CNP who did the teaching wanted to be sure I would drink enough fluids; I suspect she also uses the teaching visit to assess how compliant the patient is likely to be. You're a big investment for the insurance company; doctors have to stay in its good graces, too, for the sake of all their HCV patients. (And, like it or not, we patients are usually better off staying in the good graces of the medical practice. Decent HCV practices tend to have huge patient loads, so they are under a lot of stress and respond well to appreciation.)

The letter my insurer sent me told me I had been approved for a certain range of dates. When I phoned to schedule the teaching session, my hepatologist's CNP was booked so far in advance that I didn't see how I could complete the tx within the insurance company's window. The scheduler said the CNP MIGHT be able to squeeze me in early the next morning if I wanted to drive to the farthest location from my house and take a chance. I got up very early and had super-high blood pressure worrying if the CNP would squeeze me in. She did. Everything after that was easy.

Don't be surprised if the specialty pharmacy handling delivery of your medicine checks in on you. My prescription coverage is with CVS/Caremark, and one or another of their nurses phoned me once a month to make sure I was faithfully taking my daily pill and drinking enough fluids.

Best o' luck to you.

Gnatty

[HCVinIL]

Thanks for all the additional information!

Gnat:  I have CVS/Caremark as well and they really made sure to discuss other drug interactions with me.  I was impressed.

In my area there aren't any Hepatologists and the few infectious disease doctors are clearly overwhelmed.  From a patient perspective it's difficult to accept how long it takes to get some appointments since the ACA went into effect but it's also been very critical to my treatment so I can only complain so much.