Hep C Discussion Forum

Canuck · Guru

RE: Can't afford treatment? What can I do?

5-1-18 · Guru

Karyl wrote:
Just got a call from my pharmacy telling me I'm APPROVED!!!!!!!!!!!!!!!!!!!!!!!!!!! ZERO copay! Thanks Gilead!!!!!!!

woohoo! i'm so happy for you. i love gilead too.

Tig · Admin

Hey Carol,

8 weeks should do the trick. With a viral load below 6 Million, and that low fibrosis score, you’re eligible for the shorter course. I’m thrilled that you were able to get Gilead’s assistance with it. They have helped a lot of people with these new drugs.

The point I was trying to make is, it isn’t necessary to write an individual post to answer every post left. You’re free to do so, but it’s okay to respond to multiple posts from others, in a single reply. It makes it easier to follow and doesn’t require additional scrolling as your thread gets longer. Some people will quote each post left for them or others and that also takes some time and space to get through. It’s all good and feel free to do what works best for you!

When you‘re ready to start, be sure to fill out your signature line with your start date, treatment, genotype and your pre-treatment lab work. That way everyone following your progress knows where you started. You can see what some of us have added to ours for ideas. There’s a link with instructions for that in mine. If you need any help setting it up, I’ll be glad to offer some suggestions. smile

Karyl · Veteran Member

I thought I was replying to the comments?
Is this a new post? I guess I don't know what to do. My doctored prescribed Harvoni for 8 weeks for me since my VL is approx 558,000.00 and minimal liver damage (She said 1 -2) She didn't give me specifics. The pharmacy is a specialty pharmacy they use and they will deliver it to my house tomorrow afternoon!!!! Thanks for all the good advice and good wishes!! I'll keep y'all updated when I start treatment.

Tig · Admin

Congratulations, Carol! That didn’t take long at all. What drug treatment did they approve and when do you start? This is great news.

I notice you are writing a separate post for each question. It‘s okay to respond in a single post since this is your thread. Once you get started on treatment, feel free to start a new thread in the On Treatment section.

Karyl · Veteran Member

Just got a call from my pharmacy telling me I'm APPROVED!!!!!!!!!!!!!!!!!!!!!!!!!!! ZERO copay! Thanks Gilead!!!!!!!

Karyl · Veteran Member

I did have a fibroscan. She didn't give me the exact results. just said minimal level 1

Karyl · Veteran Member

The man at the pharmacy said this would be my case if I qualify but I'm scared I make too much. I make 48K a year and my daughter makes around 30K for our household of 3.

Karyl · Veteran Member

She didn't tell me the exact numbers but I think my VL is between 5-6 mil. and Stage 1 fibro. she said very mild. I just talked to my pharmacy. Ins approved but the copay is very high. He said over 3K for 4 weeks. He's trying to see if I qualify for assistance. I think my household income is too high though. I'm 65 and trying very hard to say a little to retire with. My income alone is 48K before taxes and the man at the pharmacy said he will try. Does anyone know what Gilead considers 'Low income"?

Canuck · Guru

Karyl wrote:
It's all up in the air right now. My hep c doc sent my script to a specialty pharmacy. Both pharmacy and dr. office is communicating with the insurance company. As of today, they received (and I will get in the mail also) the first rejection letter from my insurance company. My dr. office said not to worry that they will keep working on it. Right now, I'm in limbo. Nothing is settled except my dr. has ordered more blood work to rule out hep A and B (even tho I've been vaccinated against both) and waiting on the insurance company.

So, this above is your newest update (since about a week ago) ... good then that your doc and the pharmacy are continuing to keep this "communication" going between all of them (doc/pharmacy/insurance) - as backward, stunted, stilted, choppy, erroneous, confusing, and seemingly futile as this conversation direction would appear to be - please do let them (doc and pharmacy) continue on with it (whatever it is they will continue to do) until it has been completely exhausted by them - your doc is right, try not to sweat it (yet), not until your doc and pharmacy confirm the best they can come up with, or true futility - I am betting they WILL make this work for you, eventually, one way or another.

Good about the hep A/B testing, doing any paperwork/checklists (the fundamentals are required) - even when it seems common sense should be overriding everything and be forefront in priority - it does not always go as it should or as we think it should or in a smooth orderly fashion - it's a process (often frustrating).

You may be surprised that it might not take your doc not too much longer (maybe) to get things sorted, so that things are working in your direction.

Even if you and your doc continue to experience futility (and this is not yet!), then (as you can see) there are and will be other ways to circumvent the troubles (some of the info/and funding info brought to your attention here on the site).

Be patient a bit longer if you can, to let your doc and pharmacy exhaust their attempts on your behalf.

Feeling like you are in limbo is very unpleasant - and I am very sorry for your delays as I know what it is like when you need and want to get started and cannot - but... it will happen! - this i can guarantee you - it starts with you, you are the key, and all will fall into place now that you are requesting treatment. You'll see, it will happen, by hook or by crook, just wait a wee bit longer to see what the next move is. In the meantime keep up regular communications with your doc/pharmacy for their updates to you on this "Plan A". I think you will all be able to get Plan A to work for you, and you may never need to work on Plan B or C.

BTW - can you tell us what your VL is, and what your Fscore is? What tests have you had done to determine your Fscore - by blood tests only, or have you had a fibroscan as well? Have you ever had a liver biopsy in the past? Have you had a recent abdominal ultrasound?

I hope you are trying to remain calm and steadfast about all this difficult processing and positioning - I found this part of the journey hard too. C.

Tig · Admin

Carol,

There’s a link in my signature to a list of payment assistance programs. There are several that will tell you, as we discussed before, that will tell you they can’t help if you have any form of government coverage, like Medicare and Medicaid. As Shemp reinforced, you need to call them all and explain your situation. They will do their best to steer you in the right direction.

Shemp · Senior Member

Hi Karyl,

You should contact Abbvie the maker of Mavyret.When I spoke to they gave me a copay card for $ 6,000.00 for my first month,and $3,000.00 for month 2 and 3.My insurance picks up the rest.If that isn't enough you can apply for a grant from the Healthwell Foundation.www.healthwellfoundation.org/dis. Once you get into the site look for help for hepc.I applied and they gave me a 30,000.00 grant to help pay my co-pay.I probobly won't need it but it's there if I do.You can also try the pan foundation.sorry,I don't know anything about them.There is help out there.

Tig · Admin

Hi Carol,

Unfortunately it takes time for all the ducks to fall into place. We used to deal with more denials than approvals, until the last couple of years. When insurances changed, many saw companies pivot from general approvals, to frequent denials. It took multiple appeals and personal intervention to get some of these claims approved. Many members without coverage, or very limited plans, applied to the payment assistance programs for coverage help and reimbursement of copays, because insurance companies had to find ways to spread out limited benefits, in spite of all the promises. There just wasn’t enough money to go around. All of the appeals and litigation resulted in some changes and requirements to how these approvals were handled.

Don’t give up the fight! Your doctor is paramount in getting things done for you. Some are more willing to fight for you than others. Like you, I’m enrolled in an Advantage plan and they are severely limited in drug benefits. They have a restrictive tiered system in most cases, so you need to determine how they administrate your prescription drug plan. If they refuse to budge, a different plan may be worth investigating.

Iris Dragonfly · Guru

my co pay ended up being 5 dollars per month...3 months, total 15 dollars.

Karyl · Veteran Member

I'm not on an employer plan. Just medicare Advantage

Karyl · Veteran Member

yup, I get what you're saying

Karyl · Veteran Member

I'm on Humana and I just might switch if I have to. Also, I cannot afford that copay

Karyl · Veteran Member

It's all up in the air right now. My hep c doc sent my script to a specialty pharmacy. Both pharmacy and dr. office is communicating with the insurance company. As of today, they received (and I will get in the mail also) the first rejection letter from my insurance company. My dr. office said not to worry that they will keep working on it. Right now, I'm in limbo. Nothing is settled except my dr. has ordered more blood work to rule out hep A and B (even tho I've been vaccinated against both) and waiting on the insurance company.

lamassu · Senior Member

Tig,

My Medicare advantage plan only pays for Harvoni and Epclusa not Mavyret. Harvoni is not approved for treatment of genotype 2 HCV so I was prescribed Epclusa.

Between employer health coverage and Medicare advantage plan Karyl should be covered for treatment. The number of employees in the company health plan determines whether Medicare advantage is primary or secondary.

Canuck · Guru

Hi Karyl,

It's been quite a few hours since you posted your problem, but you were (very shortly, within hours?) going to visit your hep dcotor? I would have said, wait, until you have spoken with your hep doc to see what they can do for you to "pave" the way and straighten out anything that needs to be straightened out. I am not sure if there has just not been a series of miscommunications, misunderstandings, some "positioning" that, with more discussion, between you and your doc and insurance it might get better sorted, and perhaps it is not as insurmountable as it is appearing this very minute. Keep in mind all the good info you have gleaned from the folk who have brought up good info here, but finish exhausting, thoroughly, what your own hep doc says, and how that doc might be of assistance in solving this glitch - how the doc may explore options/communicate/submit requests with the insurance company - your doc may have a first, a second or even a third choice treatment drug in mind to request for you.

Please let us know the outcome of your visit with the hep doc. I hope all gets solved quickly, and via the most easy way, with the least cost. C.

Tig · Admin

Hey John,

Not to hijack Carol’s thread, but who told you Epclusa was the only option for Geno 2? Most of the new DAA’s will slay any genotype. Now I will say, some insurance carriers will only approve certain protocols due to pricing agreements with our friend, Big Pharma! I would be thrilled with any of them compared to the poison I was subjected to... wink

lamassu · Senior Member

Hi Karyl,

I am on a Medicare advantage plan which paid for Epclusa and approval was pretty quick, my hepatologist handled the paperwork. I was out of pocket $6000 for 12 weeks. The plan picked up the rest of the total $75,000 cost. My plan would cover Harvoni or Epclusa but not Mayvret.

The Epclusa usually has to be sent by FedEx from a specialty pharmacy but by coincidence one of the pharmacies was in my city so I just drove over once a month to pick up my monthly supply. I still keep the three bottles if anyone asks me what $75000 worth of pills comes in, and for sentimental reasons. I waited a long time to be cured.

Since I was genotype 2 Epclusa was the only option for me with my plan. Hope you get a solution soon. The time of year when you are able to switch from one advantage plan to another is coming up so I recommend you investigate your plan and change if necessary. Best wishes!

-- Edited by lamassu on Wednesday 12th of September 2018 07:45:52 PM

Iris Dragonfly · Guru

I had this problem and was denied treatment 7 or 8 times. I persevered and one day my subsidized health ins co called and and said they've approved my appeal. That time frame was approx 6 years.
DO NOT GIVE UP!!! These ins guys move slowly.
I also have had this all my adult life, I can relate...big time.
Hang in there!
Blessings, Iris

Tig · Admin

Another thing, there are several very effective treatments out there besides Harvoni. Mavyret being one of them. The beauty of Mavyret, besides being very effective, can be prescribed for 8 weeks, which can really reduce the costs involved. Of course more information needs to be known before I can say that's an option. Again you need to run this by your doctor and find out if it's an option for you. I'll leave a link below to the Mavyret program. They offer copay assistance, as does Gilead. Take a look and you'll see what I mean. All it takes is getting your ducks in order and making a phone call. I realize it says that anyone covered by government assistance programs aren't eligible. If you can't submit it to insurance because of a denial by them and are willing to pay out of pocket, that can result in them agreeing to assist you with the costs. Follow me? It can be a game you win if you know how to play it right. We have seen it before and trust me, these companies WANT to help, it's just a matter of finding your way through the maze....

Mavyret CoPay Savings Card

Tig · Admin

Hi Carol,

Welcome to the forum, I'm glad you found us. It's aggravating to find out your insurance company places these kinds of roadblocks in our way, but they do and it's not right. There are a few things you can do, but your doctor needs to help you. First, if you could provide us with some background information, it would help. Things like your treatment history, you said you had passed on the old stuff, so I'm assuming you are what we call "treatment naive". Do you have any of your blood test results? Things like your genotype, liver profile, viral load and whether or not you have had your fibrosis stage determined is important and helpful when replying to you. You can insert all of that in your signature line, similar to what most of us have done.

You will find information and links to payment assistance organizations in my signature line. If you use the search function at the top center of the page, a keyword or two will provide you with direction to conversations we've had here on the forum on those topics. We have tons of experience with this stuff and we'll do all we can to help you through the maze that is Hep C and treatment.

Your doctor's help with this is extremely important. First of all, you need to speak with his/her office and tell them what your insurance company has said. The doctor MUST appeal the insurance decision and provide supporting documentation, such as your history, length of time carrying this beast around and all the blood testing, ultrasounds, etc., that provide the proof necessary. You MUST provide them with your fibrosis stage or F Stage, (F1-F4) It is either a specialized ultrasound, called a "Fibroscan" or a blood test, called a Fibrotest (among others). If your fibrosis stage is elevated, F2 or above, most insurance companies will approve treatment upon appeal. Most of them also have what is known as a "Peer to Peer" consult option. It allows your doctor to speak with their doctor and that very often results in approval as well.

Get all of your information together and ask your doctor to work on your behalf. It's not an unusual request and we see our members accomplish this successfully all the time. When all else fails, there are options. The payment assistance programs I spoke of will require proof of these denials, information from your doctor, etc. They have applications that you have to fill out and most can be accomplished online or on the phone. I recommend phone contact with them because it's nice to talk to someone that can direct you with a more personal touch. They deal with this stuff all the time and if you are in a position requiring immediate help, they tend to act quickly on your behalf. There are generic medication programs and we have some information here on the forum. We have had members seek offshore help when all else failed and do so very successfully. It requires contacting them with the same sort of information I pointed out above. They take it from there.

As the forum owner and administrator, I can offer information, not medical advice on such things. We aren't doctors, so we leave that up to your healthcare team. Don't panic or let this upset you terribly. I know how stressful it can be, we've all been there and we'll help you as much as possible. Start by getting your information together and share what you can with us here. Then start with your doctor and the appeal process. Don't worry, that's number one! We'll do our best to see you through this... smile

5-1-18 · Guru

i have medicare. ask for the pharmacy # and talk to them

5-1-18 · Guru

lower income ppl are offered a subsidy, see if you can get some kind of grant or assistance.

i went thru avila pharmacy and they were very good with that.

there has to be a way for you

Karyl · Veteran Member

Hi, I'm new here. 65 yr old female with genotype 1a since I was in my early 20s. So basically I've been living with this monster all my adult life. First there was no treatment available, then it was awful like chemo. And expensive. I chose not to get treated as I need to be able to work full time. Still do, in fact. But the last few years I've had arthritis like flares that come and go sometimes debilitating me. My primary dr said it's time for treatment and sent me to both a rhuematologist and hep c dr. The former said she can't treat me until the hep c goes away which leads me to today. I called my ins company a few weeks ago and was told harvoni treatment would cost me 3984.00. I thought "I can pay THAT!" and went ahead with all the tests my hep c dr sent me to do. Then a couple days ago I called my ins. company again and was told I was told wrong the first time and that they would only pay for 4 weeks. So....I cannot afford the rest of the 94K. I have an appt. with the hep c dr in a few hours to go over my test results but my heart isn't in this anymore because I feel like I'm out of luck treatment wise. I am hoping tho, that she may have a hook up with the Gilead rep. I looked on the harvoni help site and it clearly states their coupon isn't for people on medicare etc and I am on a medicare advantage plan so I'm thinking no help in that dept. I emailed that man on this site with the mail order generic drugs. Anyone else do this?????? Is this too good to be true? Any input would be appreciated.

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