Hepatitis Forums
Hepatitis C Main Forums => Considering Hepatitis C Treatment => Topic started by: Lauren1026 on February 27, 2017, 02:06:06 pm
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Hello again everyone! So I finally got my results from my gastroenteroligist. I am type 1a and and F0. Good news liver is in good shape. But the Dr is not even submitting it to my insurance because in maryland you need to be an F2 or higher to get treatment. I obviously don't just want to wait around to become more advanced in this disease to be cured! I am 32 with a 11 month old only child and desperately want more kids without putting them at risk for hep c. Upon researching it seemed like there were ways to get it through my support path if household income is under 100,000 but I can't seem to find that anymore. Since my doctor didn't even submit it to my insurance I don't even have the option to appeal it which it seems some people had to keep doing Appeals to eventually get approved. I fully understand that this is very slow going and it could take me a very long time to even reach an F2 F3 like it has taken some people. I have also read about different ways to get generic medication and I was wondering if any of you can offer me Insight on that. I have seen that there are Buyers Clubs like the fix hep C and I have also come across the man named Greg Jefferys. Has anybody been familiar with either of these ways to obtain generics? Or gone through Greg? Everything I have read about him seems absolutely amazing and almost too good to be true!!! but if it is true he seems like an angel Sent From Heaven who has dedicated his whole life to helping people get affordable medication. Any advice would be much appreciated thank you all so much for taking the time to read this!!!!
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Hi Lauren:
When it seemed my insurance was going to deny me Epclusa, I did contact Greg Jefferys via email with regard to generics. He replied instantly. I feel we did connect. I'd say even on some profound level. My impression of him is same as yours. My appeal was successful. But I'd have likely gone that route via Jefferys had it not been. Hes is certainly one of the heroes of HCV advocacy
Best wishes on this:
~elias
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Yes unfortunately Giliead discontinued providing meds believing that insurance should be made to do their job.
I might try to find another doctor willing to fight for you. I am thinking your doctor any not want the hassle. Being a woman of child bearing age who wants more children is also a reason to treat you and a valid argument for appeal. But you must first be prescribed to appeal.
You could google patient assistance network (PAN) they can also help people get treatment. Yes several here have gone through Greg Jefferys as well with success.
Personally I dont get your doctor not wanting to prescribe because they expect you to be denied. There have been lots of people who were treated at F0
I would ask him to submit a prescription for you, or if he won't, to give you a referral to another doctor who will.
Good luck
Lynn
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Hi Lauren,
I need to declare here that I act in a voluntary capacity as a global moderator on the FixHepC forums.
Lynn provides good advice, as she says you should exhaust all your available avenues to get the treatment via your insurance which you have paid for. This includes getting a supportive doctor to submit an application using whichever criteria matches your situation, seeking advice from a PAN advocate and appealing your insurance if initially rejected.
If these avenues are unsuccessful then both Greg Jefferys and FixHepC are reliable, trusted sources of generic HCV medications. While they are seperate operations they do cooperate regularly to assist patients with HCV. As a team, Dr James Freeman and Greg presented a paper reporting generics as providing equivalent results to brand name medications at the International Liver Congress last April. To provide more confidence here are a couple of the numerous media reports about it along with a link to one of the registered clinical trials conducted by FixHepC.
http://www.healio.com/hepatology/hepatitis-c/news/online/%7Bed4f581f-284c-4355-a56d-b973525169d3%7D/study-shows-generics-pose-safe-economic-option-for-patients-with-hcv
http://www.medscape.com/viewarticle/862085
https://clinicaltrials.gov/ct2/show/NCT02657694
Wishing you well for a successful and early treatment.
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Thank you everyone for taking the time to read my rambling thoughts and take time to reply! Unfortunately the doctor's office simply refuses to take 5 minutes to send in the paperwork saying it's a waste of time vecause I will be denied. I even asked for the doc to call me stating that's not at all what he said during the appt and they said they would relay my thoughts. Really people?! I spoke directly with my insurance provider and my speciality pharmacy today who both said harvoni is covered... and yes in md the guidelines for approval are f2 and higher.... yet both said my paperwork should be put in regardless! The lady from the actual insurance provider flat-out said these are guidelines but it does not 100% mean I will get denied. She even offered to call the doctor's office for me! At that point after being on the phone all day long and with how rude the doctor's office was to me I actually declined. She also told me to definitely get a second opinion. So today while my baby was napping I researched the best doctors around me and came across Mark sulkowski who was in Baltimore and apparently that's his specialty is basically helping people with hep C. Instead of trying to argue with my pathetic doctor that I waited a month to see I'm going to try to get to him for a second opinion I'm awaiting a referral now from my primary care. When I called to inquire about an appointment with him get this they told me they have one on Monday! How crazy is that I won't have to wait as long as I did for the first guy. So at this point I'm very relieved that at least my second opinion seems to be a more trustworthy and knowledgeable doctor. And even if he tells me the exact same thing at least I can be at peace with that coming from him and not these office staff people that wouldn't even have the doctor call me back. Very frustrating but I'm so glad to have come across this forum because everybody here is so helpful and all the information on here is very interesting and informative!!!! This chick is not going down without a fight! I am going to do everything in my power to get rid of this virus and be free and carry on with my life and have more babies which is all I'm want for myself more than anything in this world. And once I have exhausted all efforts if I have to buy generic harvoni from India so be it!!! Again thank you all for taking the time to read my post and taking time out of your days to reply I really appreciate it every single person on here has given me hope
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So today while my baby was napping I researched the best doctors around me and came across Mark sulkowski who was in Baltimore and apparently that's his specialty is basically helping people with hep C. Instead of trying to argue with my pathetic doctor that I waited a month to see I'm going to try to get to him for a second opinion I'm awaiting a referral now from my primary care.
Dr. Sulkowsky is a top notch researcher in this field and he co-authored quite a number of key medical journal articles on clearing HCV. What luck you were able to get appt. with him so soon! He might be able to provide guidance on this insurance issue...
I would appeal any insurance company decision telling you you need to wait until you're really sick to get approval. Especially since you have a good medical reason for wanting to clear the virus now.
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Go get em tiger
They're going to hear you roar!
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Being proactive is good for your health ;)
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Update... Dr sulkowski is amazing! He thinks one way or another I will have treatment within a few months. Thank God I feel like a weight has been lifted off of me. He immediately entered me in a study that he said is like a coin toss. 50/50 between zepatier and harvoni. If I get zepatier no problem I will have the pills in a month or less, but if I get chosen for harvoni we will have to fight with my insurance. But to my relief he said even that route would only be 3 or 4 months approximately. He said zepatier is just as effective but I may have to also take ribavarin which would mean 9 pills a day. Anyone else had this for treatment? At this point I would take 25 pills a day if it meant a cure in the long run! I am so thankful I found this doctor who him and his staff seem to go the extra mile to get people the cure they need regardless of liver damage.
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Haven't had that treatment but I have taken ribavirin on 3 seperate treatments. I get very anemic when taking ribavirin and feel very run down. Anemia is a not uncommon side effect of ribavirin. Also some people experience what they call riba rash and also others have some anger issues on treatment which some call riba rage. But the rash and the anger issues are less common. Some people have less trouble than others all I experienced was anemia.
Not to discourage you just so you are prepared. I took a lot of riba in my day and would do it again if i had to.
That was why on my last successful treatment I asked my doctor if she thought it would be a good idea to add riba to my 24 weeks of Harvoni to finally cure my hep c.
Good luck
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Lauren, isnt it unusual for study participants to have to pay for their study meds?
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Dragonslayer,
Through this study I will not pay for anything thankfully! :) Before finding this doctor I wasn't sure if I would be able to obtain treatment because of me being an F0 and not having any signs of liver damage.... so earlier posts I was inquiring about purchasing generic drugs kinda as a back up plan if you will. The Dr I went to for my second opinion seems confident I will get treatment one way or another... hopefully with the zepitar because that will happen the quickest without a fight with my insurance. Still waiting on news! Fingers crossed!!!
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Just wondering about the fight with your insurance comment why would you need insurance if it is a study?
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Lynn,
Not sure exactly! Lol. It was alot to take in at the appointment honestly. I thought the way he explained it was if I get chosen for zepitar in this "coin toss" study i get it free I believe through the manufacturer? If it picks harvoni for some reason it must go through my insurance which will get denied (being an f0 on medicaid in maryland) and he will then appeal it. Why harvoni goes through my insurance but the zepitar doesnt is a gray area... but from what i understood was because it came from the maker directly in this particular study. But I was told last Monday I would wait 4 to 5 weeks for an answer. Today I received a call from Dr Sulkowski himself saying the "toss" went in my favor and it chose zepitar for me!!! I am beyond happy and so thankful that I am able to receive treatment. My blood work checked out and I don't have to take the riba with it thankfully. And of all days I got this great news on my son's first birthday! I've had goosebumps all day. I found out I was positive about 3 months ago.... waited a month for the first doc to do nothing.... and here I am a week after my second opinion with an end in sight! I am so excited. And to my surprise I should be able to pick up my first month's treatment within a few days. Thank God! Whooooohooooo!!!!!!
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Totally random question for anyone else reading this thread.... was going over my February blood work today and my platelets were high.. like 600s? And Google is not my friend on this one and quite frankly was scaring me! Anyone have any thoughts on this? I actually went to my primary doc today bc I've been battling a cold for over a week and mentioned it to him. He repeated blood work but didn't go into detail too much. Probably because since my hep C diagnosis I have been somewhat of a spaz...
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You should get the high platelet question answered by your doctor but did find this
http://www.mayoclinic.org/diseases-conditions/thrombocytosis/basics/causes/con-20032674
Thrombocytosis is high platelet count
I am guessing either you would be treated by a clinical trial with the Zepatier and in a clinical trial the trial provides the medications.
If you are not being treated in a trial then that would be by normal channels getting a prescription through your insurance. Also a lot of people are able to get Harvoni through their insurance with no liver damage.