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Post Info TOPIC: worried about unprofessional medical staff
Huey


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RE: worried about unprofessional medical staff
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1) The Insurance Company will play you! Know This.

2) The Doctor that seems not to know what he is doing, really doesn't know what he is doing!  These doctors are trying to help they just are getting little or no guidance from the various regulating bodes and have to be so so careful.

3) The Mail order or speciality pharmacy is working for the insurance company, Not you,

 



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
Marypetrecz


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I agree with isiscat.  The interferon is so difficult to tolerate,  if you can do the S/O , it'd be so much easier with great results.....I was undectable in 4 weeks...and even though some people aren't they are by week 8.

do what's best for you...not the docs...not insurance companies....you!



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Isiscat2011


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Hi again HB:  

I am leaving to go out of town in a few hours and won't be able to check back until late tomorrow.  I wanted to leave you with one final thought because I know time is of the essence in this situation.  

I understand that the idea of putting things on hold to get a second opinion may be overwhelming.  If you decide against that option, I would strongly encourage you to at least talk to this physician (not his nurse or assistant) about the possibility of substituting Olysio for Interferon/Riba.  You should qualify as interferon ineligible based on the history of depression.  You can leave a message that you wish to speak with the doctor directly. 

Insurance has already agreed to cover the Sovaldi and if they don't want to cover Olysio the patient assistance program is likely to. (I have read that Olysio is easier to get financial assistance for than Sovaldi.)  I would really like to see you spared an unnecessarily harsh tx as there are other options available to you, and Olysio is available right now.   Additionally, your on treatment medical care needs should be reduced with Sovaldi/Olysio, which will lessen the burden of not having good access to this medical staff, should that problem continue. 

Whatever you decide I wish you the very best.  We are here for you no matter what happens.  

P.S. Tig has researched the patient assistance programs and I'm sure he would be happy to fill you in.  We also have members who have received help this way.

 



-- Edited by Isiscat2011 on Tuesday 24th of June 2014 05:25:12 PM

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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


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The problem, as I understand it, is not with the pharmacy or even the pharmacy mix up.  That can and does happen.  The problem is not having confidence and trust in this specialist.  My impression is that you have legitimate reasons for concern.  

I would see another specialist: if possible meet with a hepatologist who has experience treating hepc patients and who doesn't relegate the bulk of monitoring the treatment to the nursing and support staff.  By seeing another doctor, not only would you have an experience by which to compare this medical provider, but you could also obtain a second opinion on the best treatment option for you. 

Sometimes we just have to trust our instincts, and if this medical provider or something about this situation just feels wrong, it is worth paying attention to that feeling.      

You have to decide, however, whether you are willing to delay starting tx, because it would cause a delay.  If I wasn't certain that I was with the right doc and on the right tx I would accept the delay.  I would call the pharmacy as well as the insurance company and tell them that I decided to get a second opinion.  I would then call my PCP and get in to see him asap.  Explain the situation and how important it is to you.  He isn't going to hold it against you that you haven't seen him for awhile.  I expect he will want to try to help you sort it out.  Moreover, he knows who the best specialists are, and can refer you.  

It is kind of like delaying a planned wedding.  Better now than before it is too late.  Now that everything is approved it should be able to be put on hold for long enough to get a second opinion.  Also, just tell the current office you are getting a second opinion.  There is nothing wrong with that.  

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Huey


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Hi HB,, Let me tell you , these speciality pharmacy are ridiculous I have had to fill 6x ."last time today"  and it has never been what i expected yet.  First the Dr wights a script "one script" for both drugs, "because at the time you could not give someone one without the other." , So then the pharm can't find the script for the Sovaldi, then it can't find the script for the Ribavirin, When they get that straight they send me the Sovaldi in one package and the Riba in another.  The next month they send me only one package with both drugs . I never know how many packages to look for because of no consistency.  Then after 12 weeks, they only have a script for 12 weeks of riba and 24 of the sovaldi, Lucky i had a whole month to get the mess straighten out because it took the whole month.

  I would not expect any different from your spec. pharmacy  

 The MA at the Dr. office however, was right on . gave me a number to call direct. and was able to get things done through her. 



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
hummingbird


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I do however I haven't been to see him in a long time because of not having any insurance. Obama changed all that yipee



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54 yrs contracted between 1979 & 1983 diagnosed 1993 liver biopsy 2006 grade 1 stage 1 then vl present 5.6 million
Isiscat2011


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I'll give you the best answer I can, but first, can you tell me if you have a primary care physician or any other doctor who you have an established relationship with that you trust?



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
hummingbird


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You are so right! So when I go to this appointment I will have to be clear about what I expect and if they can't provide it, I will need to get a second opinion.I guess I would have to get my records sent to new dr. What would switching drs do in terms of insurance? Would I have to ship the meds back and start from scratch? My insurance already approved everything. I have done a lot of work getting to this point. I just don't know if I can trust them. I mean, it is my life on the line here. I'm so glad I joined this forum. I'm sorry to be overanxious...Right now my life is set up in such a way that it is a good time to treat. Isiscat, I'd like to hear your opinion on exactly how to iron out these concerns. I will take my time,  I'm going to listen to suggestions. Thank you for being real. 



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54 yrs contracted between 1979 & 1983 diagnosed 1993 liver biopsy 2006 grade 1 stage 1 then vl present 5.6 million
Isiscat2011


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Hold on there, HB.  Nobody in this medical office directly answers the phones; it took a week's worth of calls from you and the pharmacy to get a call back, and the nurse intentionally hangs up on your pharmacy.  Based on this information, as well as a couple of other big red flags, I would think this through a bit more.  Perhaps get some of these concerns really ironed out before making a firm decision. 

Will the pharmacy and the insurance company continue to have your back when the problems are of a medical nature that they are not directly involved in? You may not be in any condition to be your own advocate if the tx gets rough.  While it is only 12 weeks an Interferon/Riba based tx can be quite bad for some people. It is your call, but many of us have been through these situations with medical providers, and they don't tend to get better as the tx continues. The only difference is that then you are stuck.   

There are no guarantees in life or in medical tx, but minimizing unnecessary or unacceptable risks is usually the best way to go in order to achieve a desired outcome, and make it through in one piece.     



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
hummingbird


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Thanks for your answers support care & concern. It seems there was a misunderstanding over pegintron vials & redipens and also a question as to dosage. So I'm not freaking anymore. I probably owe the nurse an apology for wanting vials instead of redipens. It wasn't possible with my dosage. So the snag is out & the meds get shipped tomorrow. When I receive them, I am to call & make an appointment with the nurse on the meds & you can be sure I am going to ask a lot of ?'s. I am impressed with the pharmacy cuz they do have my back. The insurance company was also involved in straightening it out along with pharmacy.

 No, she shouldn't have hung up on the pharmacy and I am going to address that incident @ my appointment.

This being my own advocate stuff is rough 

My next step is to relax & get the knot out of my gut.confuse



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54 yrs contracted between 1979 & 1983 diagnosed 1993 liver biopsy 2006 grade 1 stage 1 then vl present 5.6 million
Tig


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Hi HB,

That really is a situation worth your concern. I would contact your insurance carrier immediately and speak with the patient care coordinator. Explain what is happening and see if they can get some sort of explanation going. It may be worth requesting a second opinion. You may find a different practice suits you better in many ways. I'd leave another message for your current physician to contact you regarding any further care and then explain your concerns. It may be best to request a face to face with them before proceeding any further with treatment. If they're unable to cross the t's and dot the i's before treatment begins, I'd be concerned about their attention to detail after it starts. You should be completely comfortable with their ability to care for you beforehand, they owe you that much! Good luck...

Tig



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Tig

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Isiscat2011


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Hi Hummingbird:

There is a wide disparity in the medical care people are receiving for hepc tx.  On one end of the spectrum there are hands-on physicians who are hepc experienced, readily accessible, and closely monitoring their patients.  On the other end there are situations where support staff are essentially administering tx and it can take days to reach them.  

I think it is important to have a good idea where your medical care falls within that spectrum before beginning treatment although this can be difficult for a patient to assess.  Good medical care is important for everyone but especially for people who are on Interferon/Riba regimens.  Not only can the medical care you receive effect how treatment goes in the short-term but it can also have long term consequences.  If you are uncomfortable with the level of care you are seeing then now is the time to address it.  Once you have started treatment it will be much harder to change medical care providers.  Take your time now; these are important decisions.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
longld


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I wouldn't put up with this either - normal HCV treatment requires multiple calls over an extended time - been mentioned elsewhere but my recommendation is to use a liver transplant doctor whenever possible - believe they have the most experience with HCV.  In my case, I asked my Kidney doctor for a recommendation of a great liver transplant clinic who had someone who worked a lot of HCV cases.



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62 Yrs Old, CHC Geno 3, Cirrhosis, Kidney Transplant (13 yrs), On Sovaldi/Riba Treatment (24 week) since Feb 01,2014

Viral Load 7M on 1/8/2014,  UND at EOT 7/18/2014
Marypetrecz


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I'd be concerned also.  You're going into a tough round of meds and your docs should be easily accessible.



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hummingbird


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Hello everyone. I'm feeling like I made the wrong choice of GI. Here's what's happening. Either the dr or the nurse prescribed the 1st Pegasus/Ribosphere/Sovaldi  script about 1 week ago. The problems are as follows; They sent it to the wrong specialty pharmacy & my insurance did not approve Pegasus. They approved Pegintron. I found this out by talking to the correct specialty pharmacy. Ok so they made a mistake, we are all human right? So I called the dr's medical assistants who handle this stuff I gather. They don't ever directly answer the phone. Which is fine, however, I've been calling once a day for a week now. So has the pharmacy. There have been no calls back to either myself or the pharmacy. So I made my morning call this morning to the pharmacy. They did get hold of "the nurse". But there was another problem, the pharmacy was "hung up on" No prescription was given to the pharmacy & the pharmacy was not called back. The specialty pharmacy worker that I talked to said no reason was noted for the "hung up on". So I called the dr's office & of course no one answered & I left yet another message. I'm worried about the care I'm going to receive if the prescription ever gets filled. Is this normal behavior from the specialist & his office?   

Celeste



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54 yrs contracted between 1979 & 1983 diagnosed 1993 liver biopsy 2006 grade 1 stage 1 then vl present 5.6 million
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