Caring Physicians

Hello,
  Can anyone recommend any "caring" GI physicians group around the Columbus or Cinci Ohio areas that seem to give a damn about your Hep C illness??? The group that my husband is seeing now never returns phone calls. He was supposed to start treatment  Dec 1, but the company that they called to send the medicine to our home called at the end of Nov & said they were not a preferred provider for our insurance. I have since called the GI group x3 to see what the status is & if another company has been contacted to send the meds (in the insurance net-work). I'm always told that they will have to relay the call & get back to us. We want to get this going. Any info would be greatly appreciated. ~Thanks~

[NYgirl]

Maybe you can do all the leg work on your own via the insurance company if you can get a good pharmasict to help you?  Mine are not mailed to the house but to the local CVS.

My doctors nurses handle everything from scripts to refills to syringes to appts and results.

I think probably you need to get your doctors Nurse/Practioner to get working on this.  Or call the 800# on your insurance card and ask THEM to help you figure it out. After all..they work for YOU don't they?

[FlGuy]

I agree with NYGirl.  You will find that in the begining you need to take the actions to get everyone working for you. Many have found that the meds (esp. the IFN) may not be covered in you Pharm Ins. but as a medical item.  Your Ins (mine - Aetna) may require that you get meds thru their 'specialty' pharmacy. It can be a pain but once you get everyone on the same page for meds, refills, bloodwork, intervention drugs things will click along. Make sure, if required, you get your Primary doc to spread the referrals around where they need to go.  As someone posted 'no one cares for your treatment more than you'.  In addition to everything else going on in your family you need to expect some frustration and fear.  Don't pull hair out over it - it'll come out on its own later.  For a couple of weeks be methodical, don't rant at the docs and others (more flies with honey concept).  You are in the best position to get things moving.

[NYgirl]

That's my line "nobody cares..." :)

My insurance (Aetna) I call the nurse she calls in the script and the insurance is all pre-approved for tx for a certain amount of time - and they just overnight the meds to the pharmacy.  Very easy to manage.  They call the Riba and Interferon in at the same time. Then I refill the epogen, paxill and ambien at other times.

I think perhaps you need to START THERE - PREAPPROVAL from the insurance company.  Once it's approved you could probably get it ANYWHERE you wanted to pretty much.

As the NP if it's all been approved.

If they do NOT call you back keep calling and calling and calling. They have to answer to YOU not the other way around. YOU PAY THEM.  

I would bug them senseless and if they did not respond quickly...find another doctor and ask them in ADVANCE how they plan on responding to you.

Because it's not only the Interferon he will need - most likely in the future he'll need procrit/epogen any of them and you will need that response time to be VERY FAST.  There will be no waiting on the anemia.

[FlGuy]

One more thing..It may be a blessing in disguise that he didn't start TX on 12/1.  From my experience, and with the holiday season here, he might be better off to wait until the nuttiness subsides like Docs offices closed, med delivery delays, people blowing off your requests and needs.  If the holidays are a special time for your family - enjoy it. The physical road may get bumpy. Consider starting the new year with your ducks in a row, committment to having the family on TX.  And believe me, for the good and bad of it all, the whole family goes through it.
Merry Christmas.

[NYgirl]

Also better to switch doctors NOW than IN treatment if you can't get them to call you back now..what about later?

:)  Relax about starting asap.  I was frantic about it as everyone here knows and with every delay I got more crazy...but then you start finally and you realize it's a long road and the extra few weeks really didn't make any difference at all.

Make sure your doctor situation is set BEFOREHAND.

[beamishboy]

buncha good responses!-you have found a very good support group.please come back...By all means find a Doctor that makes you feel comfortable&confident--Do not go off half/cocked-it's a long road&you don't wanna be changeing horses midrace!!!!!!!--Good Luck

[cuteus]

that is an interesting point about what number will actually NEED epogen and neupogen. It does seem as neupogen is not Rx as frequently as epogen.  One study places hemolytic anemia as high as 67%, (which seems like a large majority), and it almost correlates to the number posting its use on this board.  
It appears that anemia happens to most, to some extent. Some end up worse than others, but not all that have anemia will get a dr to prescribe epogen.  Many drs like to wait it out and reduce doses. And some insurances won't cover it.  So, you might need it but not get it for different reasons. Many seem to suffer from long term anemia effects because of the lack of intervention.
Of course, we also have seen a few for which this booster is not working as well.
One curious thing I read in this particular article on anemia, was the fact that high amounts of interferon might have its effect on anemia also, especially if the person started tx anemic. anyone else read about this?

[TnHepGuy_]

If you are intent on changing doctors, then as others above have said doing so before he begins tx is a better option than trying to change ships mid-stream.

Here is a website that lists <a href="http://hepatitis-central.com/hcv/support/oh/toc.html">Hepatitis Support Groups in Ohio</a>.

A good idea might be to contact the one in Columbus and the one in Cincinnati, explain your situation, and ask if you can be put in touch with some patients who have either finished tx or are well into it - to get their experiences with their doctors/offices. You might also try attending one (or both) of the support group meetings to ask in-person for experiences and references.

Also, as mentioned above, find a doctor who will rx him Neupogen and/or Procrit - should either of those become neccesary. And make sure that they will be proactive in their use of them - that is, they will start them <b>before</b> any dose reduction is requested. And call to see that your insurance will cover them. And call your pharmacy to see if they can have them in inventory for you before he might need them. Also, ask how often he will be seen by the doc throughout tx, how often he will have CBC bloodwork done, how often he will have PCR's done, how he will receive the results (phone, fax, in-person visit, etc), who will be seeing him during tx (doctor, GIPA, etc), what will the doctor do if he doesn't have a 2-log drop by week #12, what the doctor will do if he has a 2-log drop but is still detectible by week #12, does their office do extended and non-standard tx therapies for slow responders, do they rx other drugs such as sleep aids and anti-depressants, who does he call in case of an emergency, will he have a choice of using either peg interferon, what dosage riba will they give him?


The more you know up front, the less potential there is for a crisis down the road. You need to find a doctor/office that fits your needs - not one where they want you to fit all of their's.


May God's blessings and mercy be upon you and your husband.


TnHepGuy

[Tallblonde]

I live near Columbus.  In my search for the "perfect" GI, I've gone to the Ohio State University Medical Center and the Cleveland Clinic.  Quite frankly, I was diappointed with my experience at both places and knew there was no way I was going to let either doctor treat me (when I finally decide to treat, that is).

Anyway, the good news is, I did eventually find a doctor that I'm thrilled about.  His name is Dr. Bennett Cecil and his clinic is in Louisville, KY.  It's a four-hour drive for me (one way), but well worth it.  He only treats HCV patients, so his experience (based on sheer numbers of patients alone) is impressive.  Moreover, he really believes in customizing treatment to each patient. And on top of that, he's very caring and personable and really takes the time to listen.  There are others on this board who are also patients of his.  

Susan

[NYgirl]

What I was thinking...is that because you can't possibly know BEFOREHAND if you will need Epogen or any other "support" drug it's better to discuss with the doctor in ADVANCE and make sure that if you DO need these things they WILL be willing to treat with them instead of dropping dosages of meds.

I obviously am one who needed the epogen. Without it I might not have been able to complete treatment - most likely I would have been forced to take Medical Leave here at work and continued.

But thanks to the meds I feel GREAT (except for the ribarash making me pull my skin off if I could...etc etc).  They are annoying sides but it is possible to deal with them - although uncomfortable to say the least.  The anemia was NOT at all.

I am glad I found out in advance so that I could go on it ASAP and get rid of the hgb hell that I was in!

BTW YAY FOR FISHERESS! I AM SO HAPPY BUT THE OTHER THREAD WAS CLOSED...YOU GO GIRL THAT IS THE GREATEST NEWS!!!!!

I was thikning just this morning that the 12 weeks would be posting soon...I pray that all of you are UN-D I really really do!

[TheFalcon]

Thank you all for your caring words & comments. What I know about Hep C , I have learned from this board. You all are wonderful. We are not far from Louisville KY, I will try to call Dr. Bennett Cecil's office today. Thanks again everyone & have a very MERRY CHRISTMAS & a HAPPY NEW YEAR.

[FlGuy]

I thought I saw someone post Dr. Cecil phone, don't see it now.  But here's his website in case you haven't see it
http://www.hepatitisdoctor.com/

[NYgirl]

There ya go how about THAT for a second opinion Dr. Cecil is the way to GO!

You're having good luck arleady!

[TheFalcon]

Hi everyone,
  I called Dr. Cecils office yesterday & they got right on the ball to see if our insurance was in net-work, unfortunately, our insurance was not. One of the girls got on the phone & spoke with me for about 30 min or so. I told them that I will do anything to get my husband down there to see him, even if that means that I need to take another job to pay for his treatment. They were so kind & caring (that was just over the phone!) I am so fortunate to have had access to this website & to TallBlonde that had all the info that I needed, probably our next step would have been OSU. I don't know any of you, but I LOVE YOU ALL, you are angels with golden wings. Thank you for all the great info. I have learned sooooo much. I will keep you posted as to whether we get to see Dr. Cecil.