? About Dr. Bruce Bacon !

[kickboxingmom]

My insurance company just flat out said no to treatment for me.HCV 1a, stage 1. My Drs. office is very angry with them and called me this evening and ask if I might be interested in getting into a study with Dr. Bruce Bacon at St.Louis University.I've read about him and know he was Niomi Judd's Dr. and he cured her.I guess I would like to hear if someone is familiar or have been in one of his studies.I have a decision to make.File suit against insurance company or see about this study.Ins.com. said,I don't have enough damage yet to treat.They would rather pay for a transplant than treatment.Paying 10,000,000 for transplant maximum period.That's what they said.Do the math.
30,000,000 for treatment guestimate
10,000,000 max. for transplant
I really appreciate any and all responses.I was thinking maybe someone has already been through this.Thank You ahead of time for reading.
Tammy

[Trinity4]

I hate insurance companies.  Sorry you are having such a hard time.  I guess because I'm in the throws of tx right now the thought of having to fight with a huge corporation has no appeal to me at all.  If it were me, I'd find out the specifics about the trial and if they are offering the 3 drug therapy I would go for it.  Nothing but good results with the new drugs and you won't have to engage in a battle that you may not win.  You could be a big winner with the trial drugs.  You still have time -  stage 1 gives you that.  Good Luck
Trinity

[kickboxingmom]

Thank you .Yes, I also hate ins.co.I trust my Dr., he a good heptoligist has fought hard for me and is so worried he called himself and ask me about the trial.I trust him and I will check into this study and see if three drugs are provided.I ask my Dr. about the rescue drugs.He wasn't sure.He said, the study drs. office will get ahold of me if I qualify.
If I would happen to get the placebo, does that mean I would still get the interf., and riba ?
Thanks again for answering.
Tammy

[Trinity4]

I can't say for sure because I'm not in a trial, but from everything those who are in trials have said, yes, you will get the peg & riba regardless for 48 wks.  Rescues can be tricky, some allow them and some don't.  It all depends on the guidelines of the trial.  If you are accepted, you've got your treatment with the best care possible from a major teaching hospital so it looks promising to me.  I'm sure those that are currently in a trial will give you more specifics.  
Trin

[kickboxingmom]

Thanks again and as long as I get the (peg-IFN) and the ribavirin, I should be fine.That's what my Dr. was going to treat with.If I get the telaprevir I would say, that would be a bonus.I don't know if you beleive in God but I put it in God's Box and I'll let it fall where it's suppose to for now.I'm sure it will be fine but thought I would ask.I hope your doing fine with treating.I know from treating several times you must be OVER ready for SVR.I only wish the best for you and I'll continue on your progress till you overcome this part of your life and you will...
Tammy

[evangelin]

My husband goes to Dr. Bacon's office and he is a wonderful Dr. with a very good reputation.  I have heard nothing but praise from everyone I've spoken too.  We got to see him during our first appt. but normally we are treated by his Physician's assistant who is also very good .  We use to go to a gastro office in Kansas city but now drive 4 hours to Dr. Bacon's office and it is well worth it.  When we started, it was a 5 hr. drive for us but we recently moved.  They are right on top of things and they do many studies.  They are very busy there but they know there stuff. His PA is a sharp cookie and not even in the same league as the nurse practitioner we dealt with at the gastro office. Yes, I heartily recommend them.  I wish we had started with them...maybe Joe wouldn't be on his third try at tx if we had.  
Blessings,
Ev

[kickboxingmom]

I am happy to hear you and Joe are very pleased with Joe's treament regimen.If I may ask.Is Joe in a study and how is he doing with it ?Does he get rescue drugs with the study he is in? If he is in one.It sounds like Joe has had a rough go at this.Glad to hear again you and he feel like your finally getting some where.Thank you so much for chiming in.I thought I would take a peek at my question before I went to bed and now I think I can rest with a sense of peace and not worry.Thank you so much.
Blessings Back Atcha,


Trinity you helped so much with not wanting to go up against a big corporation.I think my husband and I are ready .We have been fighting with ins.since Nov.07.They have their hands out every month.It's just wrong.We've never suid anyone ever.That's a story all by itself as I'm sure you know.Again, your input made me feel as I am still in the Safe Zone.

Blessings To You Too,
Tammy

P.S. I mean that Ladies, Thank You ! Hugs and Goodnight.

[Marcia2202]

I'm sorry to hear about your insurance. I really don't understand their logic behind that. The transplant option would cost them even more, as one would need to do tx after having had the transplant. So they would have to pay for TP and tx. I don't think THEY know how to do the math, neither do the know what they are talking about.

From what I've heard the current studies have Peg and Riba for sure. So if you can't get your insurance to pay for tx, I would definitely go for the trial. I wish you all the best with whatever you decide. Marcia

[kickboxingmom]

Thanks Marcia.You bring up something I didn't even think about.Good thinking girl.I'll check into that.I guess again, after transplant if one is diagnosed with HCV ??????What would ins. do then ?I do feel comfortable with this trial thing.We'll see how this unfolds.That's what I mean.I don't see how my insurance is thinking.Even Dr. is saying, he's never been told flat out, no like this.I'm sure of one thing.It will turn out for the best.
Thanks Again,
Tammy     I hope you continue to continue on your treatment with little or no sides.Drink your water.

[Facta_non_verba]

My treatment was denied initially, too. The denial took 24 hours to get, so I'm sure they put quite a bit of thought into their decision. And now looking at it, it all makes sense why they wouldn't want to pay: 48 weeks of treatment of treatment probably runs about $250,000 and with WellPoint only being 21st in the nation in the Health Care Insurance and Managed Care industry with a paltry 72 BILLION DOLLARS in revenue, it's just too darned expensive.

On top of that, the 10 MILLION DOLLAR judgement they had to pay in 2008 for illegally cancelling the policies of policy holders who had the nerve to get sick with expensive diseases must have had a huge impact on the 8.3 MILLION DOLLAR salary the CEO makes.

What's a poor Fortune 500 company to do?

Jeff
Facta non Verba

[kickboxingmom]

You so hit the nail on the head with that one! If we decide to file suit against our insurance company we decided to make it a class action suit.
My treatment was denied initially, too.If you don't mind me asking.Does that mean your insurance stepped up to bat or did you have to appeal ? Are you treating, now ? Thank you for answering my question.

I had surgery for cancer thirteen years ago and that's where I think I contracted HCV.My surgeon was fired and moved out of state a few months after.Why didn't they deny treatment for that? It's so WRONG for human beings to be treated or not treated, ONLY if it's in the guidelines of the almighty dollar.Your right, it is ALL about the money.grrrrrrr ! Thank you again and again.
God Bless,
Tammy

[Upbeat]

I would say you were denied because you are stage 1.  The odds say you will die with hepc and not because of it.  The chances of you ever needing a transplant are slim.  The insurance company is playing the odds.
                                                                                            Ron

[kickboxingmom]

Thank you for responding and you are probably right.Still right is right and wrong is wrong.I feel like it's a game of Russian Roulette.I don't want to live with it.Oh well I guess we'll see what happens.I hope you have a good weekend.
Thank You,
Tammy

[Facta_non_verba]

Tammy:

My doctor appealed and was able to get my treatment authorized. I've got 16 weeks to go out of 72, and the latest wrinkle is that my authorization expired after a year. Of course, WellPoint didn't let me know in any way that it was going to expire. So, I was really stuck and had to borrow meds from someone I met through a mutual friend who was on treatment.

You already had to face the statistics of whether you would live or die thirteen years ago. Enough is enough.

Jeff
Facta non Verba

[kickboxingmom]

My hat's off to you BIG Time for doing 72 weeks.Wow! I hope the best for you.Also I hope your not experiencing to many sides.I t was nice to meet you and all who responded.
I wish good things to you all.
God Bless,
Tammy

[scratchinghead]

In the meantime I would try to live a healthy lifestyle. That will benefit you in more ways than one. I don't gag on supplements but I do study them and this group and allow for space in my budget.

All my rundown feelings have gone away since I started exercising more consistently.

Lots of stuff you can do in the transition between doctors/financial that will benefit you.

[evangelin]

No, Joe couldn't be in a study this time because his platelets are staying  too low to qualify.  He started in a study a few years ago and we wouldn't have been at all opposed to being in a good study if he could qualify.  I have talked several times to a lady in the trial department at SLU named Nancy that I liked a lot. Pick carefully what trial you get in to though.  Joe was excluded from the first vertex trial because the result of the Ideal Trial he had been in ,had never been released.  The second treatment was Infergen which wasn't FDA approved so it didn't count.  Without knowing what dose of Peg-intron he had been on in the first trial, he couldn't be counted as an official non-responder. This was a huge disappointment at the time.  They did finally release the information on the Ideal Trial but it was too late to get in to the vertex trial.  Joe probably wouldn't have made it anyway without rescue drugs.  It has all been a learning process but some of it was learned too late to help us. When we first started this journey, I had this naive idea that the Dr. would take you by the hand and knowledgably guide you through this.  When I got the picture of the real way things were, I started finding out for myself.  Medhelp has been a huge benefit during the last several years. If I hadn't been here when HR was helping us with supplements, Joe probably wouldn't have ever been well enough again for another shot at treating.  There have been some very bright people around here through the years and I've gleaned so much from them. I may not get it myself, but I have learned who to ask. :>)
Best Wishes,
Ev

[kickboxingmom]

Thank you.My daughter is 07's amatuer World kickboxing champion.Didn't compete this year.We do live a very healthy lifestyle.Gym is number one in this household.We rarely ever eat out.Cook only healthy, no soda's, etc.
Thank you and good suggestion.If I didn't work out with this RA I couldn't do what I do.
God Bless,
Tammy

[kickboxingmom]

I'm sorry to hear about all the things you guys have been through.Are Joe's platelets still to low ? Or will he be going into a study in the near future ? I only hope the best for you guys.Does he qualify for any trials, now ? By what you said, I am unsure.
How is Joe doing now ? To many questions, I know but am curious.How are you doing with all this ? Joe is a lucky man to have you by his side.By the way I love the name Joe.My brother in law  (Joe), was such a neat person.He passed with prostate cancer but was like a dad to me.What genotype is Joe ? I sure hope he is getting ready to start another trial to treat.I've read nothing but good things about Dr. Bruce Bacon.
Thank You Again,
Tammy

[Facta_non_verba]

Hey, you and I have something in common. My 18 year-old took first last year and second this year in the world championship for jiu-jitsu. Wish I could say the same for the diet, but I can't. He ates everything in sight, and a lot of it is junk. I was surprised a few years back to find that most Olympic athletes eat pretty much like my son.

We don't exactly set a perfect example, but try to eat at home as much as possible. For myself, I've had a really hard time sticking to any semblance of a healthy diet. First off, it's better to take the meds with a high-fat diet, but the biggest thing is that I'm just not that hungry on treatment, have lost about 15 pounds and eat high calorie food to keep weight on.

Good luck on your journey. You'll get a lot of help on this forum.

Jeff
Facta non Verba

[kickboxingmom]

We have something else in commom.I also have to eat high in calories to keep weight on.I was thinking ensure and ice cream before bed.Do you take ice cream or peanut butter with your meds.Make shakes or high calorie drinks.Sometimes it's easier to drink than eat.Congratulation on your son's accomplishments.They do have to work so hard to get those title's.I'm not going to even mention how expensive.Worth it in the end cause we know exactly where their at and what they are doing and with whom.It's been nice talking with you and I hope nothing but the best on your loooooong journey.Sixteen weeks will fly by fast.Your almost done.Fifty six shots DONE.Do you think your treatment is working?I would assume yes, if you've extended to seventy two.Do you have enough med's to finish ?It really has been nice talking with you and continue to have a good weekend.I have alot of chores to do today so I'll be on here later.Thanks, Tammy
Root Beers for our kids accomplishment's.Now if they can handle homelife and school work we'll be good.You know what I mean.

[kickboxingmom]

Bump

[kickboxingmom]

I bumped this because mgskye I thought may benefit from some of the information on this thread because on social side a question also about insurance and denial was posted.Thank you to all and I don't mean in any way to hog up any one's space.Just trying to be in charge of my fate.Maybe other peoples fate also  
Tammy