Triple therapy, select MD carefully

[pcds]

I would seek an MD that has experience with these new medications.  Many do not.  This treatment is not like the old.  Close monitoring and understanding of how to adjust or add medications, depending on bloodwork is critical.  My treatment has been under a group of hepatologists at Mayo Clinic who did the trials.  So far I would grade them B+.  So top of the heap by reputation, but I have had issues with them regardless of how experienced they are.  I suppose if I get SVR after all I have been through, I'll give them an A+.  Bottom line is, you also need to be informed, which this site helps with.  Question decisions if you have concerns.  I know they think I'm a pain in the butt at MD office, but too bad.  You have to advocate for yourself, it's your life.  I'd like to say these medical people really care, but in the end you are just another patient to them.

[pooh55811]

That is a good point ... that this treatment is a very labor intensive treatment with little reimbursement.

I saw my GI for an initial (long) interview and exam. Prior to that I saw my GI's case manager (an RN) for a long interview. Since starting treatment I have had labs drawn weekly. I also see the case manager weekely (the same day I have labs drawn) at which time she goes over the labs with me, gives me copies of the reports, discusses how I am feeling, make any adjustments, and evaluates any side effects I am having. This visit lasts close to an hour (every week). The MD office does charge for that visit but it is still not much compensation for all of the time that is spent on me. In addition, the case manager calls me periodicaly during the week to see how I am doing and I can call her if there is a problem.

It seems that there should be better compensation for these MDs who are treating us very complicated patients with complicated medications and regimens.

[pcds]

Something to think about. This is a labor intensive treatment for the MD with little reimbursement.  I see the doc once a month for which he gets paid. I have weekly labs not at his office where feedback and medication adjustments are made, weekly by the doc with no additional reimbursement. Take the procrit, or not, neupogin or not, dose of peg this or that, riba this or that. Not to mention all the office goes through to get all the auths needed for all the meds required. There is no money in this for the docs.

[Advocate1955]

My husband is being treated in a medical services/transplant center at the University of Washington by a hepatologist.  She specializes in Hep C and attends all of the conferences and reads all of the research.  We feel that she is excellent.  Her NP is excellent too.  This is my husband's third round of treatment (first with a Gastro and his NP who specialize in Hep C, but we had a negative experience), and 2nd two with this hepatologist and her NP.  I think they are doing an excellent job with the triple therapy, at least so far so good.  I'm sure they didn't have direct experience with it until May or June, so there will probably be some questions on protocol and side effects that come up with their patients.  However, I continue to be very impressed with the good care my husband receives there.  They follow the protocol for bloodwork, they respond quickly to questions and concerns by phone, and they follow up quickly with prescriptions and referrals (to a dermatologist, etc.) when needed.  They've done a great job of managing side effects through treatments, and it's clear that they really care a lot about helping my husband achieve SVR.
Advocate1955

[orphanedhawk]

There can't be much experience since the meds haven't been available for very long.
However,( although I'm not doing triple treatment,) at my liver clinic, all patients doing the new treatment are required to attend a class.
The doctors, nurses and nurse practitioners have been trained to deal with the new meds and side effects.

During my first tx,  I ran into trouble with a GI who simply followed the pharma instructions.
Switching to my current heptalogist made all the difference.
I was lucky to find experience, education, and a doctor willing to think outside the box.

[flcyclist]

You're so right about the need to advocate for yourself.  The information relayed from forum members and their doctors advice is very concerning.   During a discussion my GI told me his HCV patients require additional care and now with the addition of the PI's, even more so.  There appears to be no additional training/workshops required in order to administer these powerful drugs.  

Following is a link to an article relating to the additional requirement of the doctor and staff for triple therapy.  I gave a copy a while ago to my GI for his reference.    Hope trt is going ok for you.

http://www.idse.net//ViewArticle.aspx?ses=ogst&d=Hepatitis&d_id=213&i=ISSUE%3a+August+2011&i_id=753&a_id=18862

[desrt]

Good stuff Judy. We're fortunate to have people like you who have done both Peg/riba and the new tx and can compare and contrast. Hang in there.

[pooh55811]

I concur. One needs an experienced MD who will do close monitoring. Too many things can go wrong on these meds and I feel it is mandatory to have an MD who is knowledgeable and proactive.