Hep C Discussion Forum

Bombeni wrote:

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Medicare and your supplemental has covered all the conventional costs Peter?  Yes. The supplemetal F Medigap program I have covers all copays. But only for treatments that are covered by Medicare in the first place. I apy around $187 a month for this program so it's a bit spendy. Also, if I give it up, I won't be able to get it again.

Wow I hope I can find medical people as caring as you found.   I am very lucky!

if I may ask, what is the outcome of your 12 week treatment with sovaldi? Was that just recent?  I finished Sovaldi and Olysio on July 3. I was still undetectable on Aug 3. I am awaiting my VL results from Sept 3. 

Is it a whole new drug that's coming out in October, that no one here has tried? Quite a few folks here have treated with Sovaldi and Olysio. 

sorry there's so much info and I've just been on this forum since yesterday.  I'm still trying to get it all straight No problem. The more questions you ask..the more answers you'll receive!

 

 

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Hi Robbie,

I recommend you utilize the search function here on the forum. It's full of useful information. Do a search of Sovaldi + Olysio. You'll find several discussions on the topic(s). Good luck !!

Tig

Oh, in case you're interested in the payment assistance programs available, such as the Pan  Foundation that Peter mentioned, it's listed there too. Lots of info here on the forum!

http://hepcfriends.activeboard.com/t56904226/payment-assistance-programs/

Hi Robbie,

I'm 64 and have had Medicare, due to disability, for about ten years. I also pay for a medigap policy (supplement F) which picks up the copay for what Medicare doesn't pay. So far almost all my exorbitant costs for my treatment have been alternative for which Medicare pays nothing. As far as the conventional care...I haven't paid a dime. Medicare has picked up all costs for biopsies, endoscopies, colonoscopies, a night in a sleep lab, blood tests, ultrasounds, and hepatologist and Primary Care doctor visits.

I recently finished a 12 week course of S/O. That was covered by Medicare Part D. Medicare Part D is handled differently than Medicare and is dependent upon which third party drug plan you sign up with (if you sign up with one). I lucked out by signing up with AARP which is underwritten by United health care. United health care is approving S/O for interferon intolerant patients with advanced liver disease. My medigap policy doesn't cover the co pay from my Part D plan and so United health care only paid for 66% of the S/O. It was a bit of a fight, but my treatment nurse, Karista Peabody at OHSU, fought the good fight for me and managed to get my drugs approved. My reason for interferon intolerance was severe depression (I have suicides and major depression on both sides of my family).

Then heaven delivered me an angel in the form of my pharmacist, Shelley Bailey, of Central Drugs in Portland Oregon. Somehow she did all the legwork for me and hooked me up with the patient Access Network (http://www.panfoundation.org/) which completely covered my copay. I did nothing but take delivery of the drugs each month (which Central drugs delivered to my door via courier).

Most of the cost of my treatment, however, has been borne by me. Conventional medicine is good at monitoring things, and, recently, at curing hep C with the new DAAs (albeit at an exorbitant cost). It has not a clue about real health and how to keep yourself healthy in the meantime. My hepatologist, Atif Zaman MD, bless his heart, really had little to offer me, other than moral support, as I was waiting for the new drugs. Of course he played a critical role when it counted as my prescribing physician for the S/O.

My naturopath, Keivan Jinnah ND, on the other hand, had LOTS of things for me to do. He consulted with me on everything from diet to exercise, from acupuncture to sleep, from supplements to psychology and supported all the different aspects of health that needed to be addressed as the virus wreaked its havoc on all the systems of my body and mind. He could tell, from reading my pulses, which systems of my body were in need of help and had suggestions and supplements to get stuff back in balance. The most expensive part of my self treatment has been diet. I switched to all organic foods, started juicing every day, and eat only organic, pasture centered, humanely grown and killed animal products. THAT is expensive! I also paid for IV alpha Lipoic acid treatment every three months.

My Primary care physician, Josh Reagan MD, was also helpful. He consulted with me all along, suppoorted me on my quest for disabilty, and was there with support when needed  for all the other aspects of conventional care when needed. Josh helped me to feel like someone had my back in the conventional medical world with his reason, caring attitude, good judgment, and extensive knowledge of the medical world. He trains residents in the probidence health System here in Portland. Medicare paid for every penny of my care from him.

Anyway, as far as Medicare and the new treatments go the important thing to do is to pay attention during the open enrollment period (around October of each year) and make sure you are signed up with a company that has been covering the new DAAs.

Good luck!

Bombeni wrote:

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There is so much I need to familiarize myself with.  

also, after the doctor has run the needed tests, what medical evaluations should I ask?  I mean that I should ask and write down for further study, like the info you guys have at the bottom of your posts?  i want to know what to have him tell me, so I can relate it to all of you and get a good understanding of my situation.

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 I'm also not one of our better informed members about the medical procedure stuff, but we have several members who are, and I suspect one of them will chime in on this thread to answer your question as soon as they see it.

 But basically, you will need to have blood lab work done specific to evaluate your present state as far as HCV and your liver condition is concerned. Also you will need to know what Genotype of the virus you have (example; I'm genotype 1, subtype a (or genotype 1a) There are several including 1-6 (I think) and including some other subtypes too. If your blood work shows the possible presence of a more advanced liver damage condition, then additional test may be ordered to check for things like stage of Fibrosis progression, for presence of cirrhosis, and to what extent, presence of extra hepatic activity such as ascites fluid build-up in the abdominal cavity, portal hypertension, bleeding of esophageal varices etc etc, (usually conditions only associated with more advanced liver damage).

I suggest getting an appointment with a gastroenterologist or hepatologist to receive care. Most basic primary care providers lack knowledge of HCV specific issues which can present a major problem later on your road to recovery.

Also, you are so right!!!

There is so much I need to familiarize myself with.

It has been repeatedly suggested to me on this forum to get informed, and I have found out that knowledge of the facts about our disease is indispensable. There are many health care workers who are very uninformed about HCV specific issues, and because of this there is a real potential for mistakes to be made. And we can be our own best insurance against these mistakes being made as long as we get involved. Goggle is your friend but even better is asking questions right here on this forum. We have members with real world experience with the issues because they have personal experience with them and solutions to problem that worked for them, thus solutions that may work for you. We also have members with answers based on fact, like Isiscat. You will learn that she does not miss a trick when it comes to where the facts are concerning the legal procedures and policies and all that crap that I don't understand. And other members also have answers based on fact that you will have questions about. We even have a member 'mallani' who is a doctor experienced in the treatment of HCV and also has personally been cured of HCV.

So I invite you to stay close to this forum and use it as an information source, a support group, to ask questions about anything you don't understand, to gain hope through the success of other members going before you, to realize the seriousness of this condition due to occasional failures that break the hearts of each and every member, or a place to bitch and moan about crap that's irritating you on a bad day. It's all here and it's all a part of this journey we are on. And we do it ALL together. It works much better than trying to do it alone.

I've been off acetomenaphen sp?  For 17 years.  I take methadone for pain and recently started subsys for breakthrough pain.  It's an oral spray of fentanyl.  

Isiscat2011 wrote:

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P.S.  I noticed you have been taking meds for 17 years for chronic pain.  This is something you will want to address with your doc right away, because many NSAIDs and other drugs can be harmful and/or toxic to the liver,  particularly in people with compromised liver functions.  You may need to make some changes in this area.  

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 Good point Isis. I've also been taking meds for chronic pain long term, most of which were harmful to my liver in the early HCV days, but then increasing to extremely harmful as my liver became more compromised. But even lately, after getting rid of all the pain meds that contained acetaminophen, I ended up with an Rx that is still (you guessed it) hard on the liver. So I've been exploring other avenues of pain management that are liver friendly and still effective. And I've also been taking a close look at some of my activities that produce pain, or rather my method of performing these activities. And although I haven't found any magic cures yet, I have been able to significantly reduce a portion of my pain just by self awareness and behavior modification.

 This is certainly only a limited solution for a limited group of pain issues, and in my own particular situation, but my point is that it's a tool that helps. And with the condition of our livers, we need every tool we can fit in our HCV fighting arsenal.

 Years ago (~1982) I had a girlfriend who was big on listening to guided imagery. I listened to some of it just because of the fact that we lived in the same house, but I never considered it useful for a rough, red neck, tough guy like I thought I was.

In 2006 I was a patient in an inpatient alcohol/drug rehab, where mental health classes get old real quick. So one day, after finding out that we were about to attend a class that allowed us to lay on the carpeted floor or bring a blanket and pillow to class, and that we could even sleep if we wanted to seemed just too good to be true. So I brought my pillow and got all comfy as the therapist put a guided imagery CD in the player. I experienced a calmness and feeling of serenity like I have never felt that day and it really felt good. I have since purchased many guided imagery, and relaxation music CD's and listen to them at very low volume all night most nights while I rest my body and mind.

I have also noted that many different people use many different solutions for pain management and like I did with guided imagery, I don't consider many of them to apply to me. But now that I've opened my mind to the possibility and have some willingness to step outside of my little ignorant box, I have a sneaking suspicion that I'm about to add some more tools to my arsenal.

Hi Robbie:

I can't tell you first hand because I'm not on Medicare but I do know that Medicare is following the AASLD guidelines for HCV tx and can be expected to continue to do so as the all oral combos are approved.  Here is some info about that:  

http://www.hepmag.com/articles/Medicare_payment_2501_25688.shtml

I believe the reason Medicare did not approve Mike's request for the Sovaldi/Olysio combo is because he also has HIV and the S/O combo has not been well studied in HIV/HCV positive patients.  Sovaldi and Ledipasvir has been studied in the HIV/HCV population but it won't be approved until October 10 and Mike needed to get started on tx asap.  Riba has also been well studied in HIV/HCV patients so the Sovaldi/Riba combo Mike is on may have been the safest protocol from a medical/prescription standpoint.  

I suspect the lack of clinical trial data is the "official" reason for Mike's denial.  Another reason could be that the combo is not FDA approved, however, Medicare is now paying for the Sovaldi/Olysio combo for others who have advanced liver disease.  An obvious reason is cost, but again, Medicare has been approving the S/O combo for some. 

After you know more about your liver status and other possible HCV medical complications you will have a better idea about coverage. Medicare is expected to closely follow the new AASLD guidelines on who to treat so once you familiarize yourself with the guidelines you will have a better understanding. Whatever Medicare doesn't cover your insurance should pick up assuming you are eligible for tx.   

In the meantime, your doctor visits and testing should be covered.  I wouldn't worry too much about that now; just get in to see the doctor and take it one step at a time.  We will be here to help you through the steps.