Author Topic: Fighting for Harvoni: Tales of trying to get treatment (Read 24818 times)

catladyx · « **on:** April 29, 2015, 04:58:31 pm »

I was denied Harvoni by my insurance company last month...still trying to appeal the process. My doctor said i should go in for one more test - elastography, to try and get a better picture of my liver to, I guess, prove it's bad enough for me to get the medicine.

If that fails, I will go through Gilead's Support Path.

I try to keep my spirits up, but I often feel dejected and also angry that a disease that is, after all, contagious, is treated with such a cavalier attitude by the insurance companies. It seems like it would be easier to cure it than to continue to treat the sick - even if the infected aren't sick yet.

Just wanted to vent. Also, I would love to hear from some others who are appealing their rejections.

seekir · « **Reply #1 on:** April 29, 2015, 10:07:43 pm »

I'm crewing with you in the same ship. My insurance company's taking their time providing me with appeal forms. Wonder why...

Being stuck here in limbo hasn't done much for my spirits either. Rejection tends to make me moody. I've bounced around from lab to lab, seen an utterly disinterested dermatologist to plead for support of my GE's suspicion that I have HCV-related skin issues. Insurance company unimpressed so far. GE thinks I should have a biopsy, but I suspect a biopsy would only confirm the fairly good state of my liver as it was revealed by the fibroscan. Not great to watch the precious days dwindle in a compromised state of health while the cogs of the medical machinery turn round at such a leisurely pace.

Coach Mike · « **Reply #2 on:** April 30, 2015, 11:52:40 am »

Sorry about your issues: being sick and not getting the treatment you need. I was diagnosed one year ago. I was denied Sovaldi/Olysio and went through the whole appeal process. I was denied Harvoni and went through the same. I tried Support Path, but my wife and I were $5000 over the yearly household income limit. My insurance company requires a biopsy to qualify for treatment with a score of F-3 or F-4. I am F-1. The insurance company is waiting for the price to come down-they all are. Two years ago, 48 weeks of interferon-based treatment was the best option. A year ago, Sovaldi and Olysio offered a 12 week cure, but at a $150,000 price tag. Six months ago Harvoni came along with a $100,000 cost. A few months later, Viekiri Pak was approved and competition brought down the price to some "secret" level"-some say around $46,000. My insurance is through the state. I have filed a FOI request to find out what they have to pay for Harvoni. They will probably figure out a way to get around that, as it is such a "secret".
Merck has some promising stuff that should be out later this year. Achillon has shown some good results as well. In a few months, things will probably loosen up even more price-wise.
I know how frustrating it is to have to wait and deal with insurance companies that don't want to pay and doctors that say "you aren't really that sick", you can wait. I am 61 and I had this all my adult life without knowing it. I don't know what it feels like to be "well". My normal is tired all the time. I AM sick enough to get treatment, in my opinion, and that is the one that matters most to me.
Soooooo, try Support Path. They will help you with your insurance company and even pay for your treatment if you don't make too much money. They require your insurance company to deny you twice I think, before they will pay though, so keep pestering them until you get the appeal forms you need.
We are getting there. Keep fighting.

morning_glory · « **Reply #3 on:** April 30, 2015, 01:01:44 pm »

In a nutshell - I have been waiting/trying/hoping for Harvoni, since Nov '14. I won't get into all the details, it would take too much time, which I don't have right now.

The one important thing I have found, is to keep notes with the date and who you talked with, etc. It is what is needed when you advocate for yourself or others. After many calls, it can get overwhelming trying to remember the details of who said what and when.

I have spent MANY hours speaking with so many different people, trying to get answers on what I needed to do, to get medication. My numbers don't meet the requirements of 'needing' it, according to the insurance company. Much of the time I get transferred to someone else, etc. Half the time, I would get incomplete/inaccurate information. My doctor hasn't been much help through this process. UGH!

I fully understand being stuck in 'limbo'. The Lord knows I have cried many many times, been depressed, frustrated, angry, wanting to give up, go to bed & sleep, hide from the world, scream at the person on the other end of the phone...

I have realized sometimes I just need to 'walk away' from advocating, for a timeout, because it was not helping me, physically/emotionally/spiritually, to stress out to that extent.

A couple of months ago, I decided to contact Support Path. I'm glad I did, because I got all the paperwork filled out and faxed to them (I now have a 'case #'). Still waiting on one more letter from my insurance company.

My hope & prayer for us to get the needed treatment - I would like to know what it feels like to be well.

Blessings,
MG

seekir · « **Reply #4 on:** April 30, 2015, 04:06:52 pm »

Quote

I am 61 and I had this all my adult life without knowing it.

I'm about the same age Mike. My diagnosis (15 years ago) was a complete surprise and of course there's no way to be certain how long I've been hosting the virus. Like you I seem to be experiencing considerable fatigue, and I think that living with the low ambition level isn't very rewarding. There are moments when I forget how much I want to lie down, but I suspect many of us are dragged down by the symptoms when we could be more productive (and more satisfied and content with ourselves).

The "too healthy for treatment" joke isn't all that funny to those of us who've taken the obvious measures to minimize liver damage and found that we actually may have placed ourselves in some danger. Time waits for no one, and years of compromised living could be the fate many will reap because of the strange contradictions in the insurance and treatment protocols. Handy for the foot-dragging health providers that those of us in the opposition have been robbed of energy and drive.

The secrecy that you believe is being actively perpetrated by profiteering types is a heart-warming notion to consider. Sometimes it's a wonder how mercenary people can be. Not sure I actually understand how transparency would harm the bottom line, or why secrecy regarding costs is tolerated in the community.

I haven't looked into the Support Path thing, guess I will (when I can work up the energy). I do think there may be an upside to our dilemma: there seem to be new therapies in the pipe that may possibly be superior even to Harvoni. And aspects of the current treatment regimes (dosage, time of treatment, knowledge of side-effects, etc.) are constantly being refined now that the newer drugs are being actively utilized.

morning_glory · « **Reply #5 on:** May 01, 2015, 01:10:02 pm »

@seekir,

Yesterday you said, "I haven't looked into the Support Path thing, guess I will (when I can work up the energy)." I do understand how you are feeling.

Look at it this way, Take 'baby steps', go to their website first: http://www.mysupportpath.com/

Look it over, maybe even call them to talk, or start with printing out their "intake" form.

Keep a file/folder with notes, etc. When you are ready to take the 'next step', you already have a place to start. For me, the notes are the most important thing, because I tend to have an issue with recall, at times (dates, who I spoke with, what they said, etc).

I struggle with fatigue, motivation, brain fog, "aches & pains", etc. Although, I try not to focus on it, it still effects my quality of life. (I am also raising my teenage granddaughter, which requires my physical, mental & emotional energy.)

Blessings,
MG

BTW - Naps are my friend.

seekir · « **Reply #6 on:** May 02, 2015, 11:30:01 am »

Thanks for the link MG. Sounds like you're not allowing the symptoms to stand in your way.

morning_glory · « **Reply #7 on:** May 04, 2015, 07:36:21 am »

Quote from: seekir on May 02, 2015, 11:30:01 am

Thanks for the link MG. Sounds like you're not allowing the symptoms to stand in your way.

You're welcome, I hope it helps. Keep us posted on your 'adventure', whether it is with Support Path... if you choose to contact them, or whatever you decide.

BTW - my symptoms do get in my way... it has really affected my quality of life. $:-\$
If I think about what I am missing out on - I just want to cry

and hide from the world.
But we do what we can, when we can

Blessings,
MG

morning_glory · « **Reply #8 on:** May 05, 2015, 01:58:20 pm »

Quote from: morning_glory on April 30, 2015, 01:01:44 pm

A couple of months ago, I decided to contact Support Path. I'm glad I did, because I got all the paperwork filled out and faxed to them (I now have a 'case #'). Still waiting on one more letter from my insurance company.

Woo-Hoo... The 'Appeal Denial' letter finally came today from my insurance company! It is the last piece of information Support Path needed to move forward on my case. I faxed it to them ASAP, then called them to be sure they received it.

The next step in this process - My case will now move onto the 'Pre-certification' part of getting approved or not, through Support Path. I was told I will be getting a call this week to let me know either way. If approved, they will fax an RX Form to my doctor.

I'll keep you posted...

Blessings,
MG

This morning's Bible Verse -
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7 NIV

Debula · « **Reply #9 on:** May 05, 2015, 02:01:21 pm »

Congratulation MG
I hope to see a post from you soon saying "I am starting Harvoni!!"

Good luck!

morning_glory · « **Reply #10 on:** May 05, 2015, 02:06:07 pm »

Thank you Debula!
Going to go celebrate with an afternoon nap.

MG

sapphire101 · « **Reply #11 on:** May 05, 2015, 10:18:01 pm »

Fantastic news MG.
Way to stick with it and advocate for yourself.
Enjoy that nap you deserve it.

sapphire101 · « **Reply #12 on:** May 05, 2015, 10:20:49 pm »

PS keep at 'em Catladyx and Seekir you are next!

BubbaT · « **Reply #13 on:** May 06, 2015, 01:09:13 am »

Quote from: morning_glory on May 05, 2015, 01:58:20 pm

Woo-Hoo... The 'Appeal Denial' letter finally came today from my insurance company! It is the last piece of information Support Path needed to move forward on my case. I faxed it to them ASAP, then called them to be sure they received it.

The next step in this process - My case will now move onto the 'Pre-certification' part of getting approved or not, through Support Path. I was told I will be getting a call this week to let me know either way. If approved, they will fax an RX Form to my doctor.

I'll keep you posted...

Blessings,
MG

This morning's Bible Verse -
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7 NIV

Good News MG,
Looks like the Lord has got your back!
Thank you, Jesus!

morning_glory · « **Reply #14 on:** May 07, 2015, 08:54:48 pm »

Quote from: sapphire101 on May 05, 2015, 10:20:49 pm

PS keep at 'em Catladyx and Seekir you are next!

Yes, don't give up or give in... Advocate for your treatment!

Blessings,
MG

morning_glory · « **Reply #15 on:** May 08, 2015, 11:07:57 am »

Thank you sapphire101 & BubbaT!

Okay kids, here is the latest/current info -

May 5th - I faxed the 'Appeal Denial' to Support Path
May 6th - In the evening, a message was left for me to call Support Path
(Support Path also faxed an RX form to my doctor's office, for his signature)
May 7th - Called Support Path back in the morning, to hear - "You're APPROVED for Harvoni" !!!!

(My doctor's office faxed the RX form back to Support Path, in the afternoon.)
May 8th - I confirmed with Support Path, they did received the RX fax
I will be contacted by their Specialty Pharmacy to verify shipping info, etc.

Sooooo....by next week, I could be taking Harvoni (WOW)
This still feels sooooo verrrrry surreal.

-------------------------------------------------------------------------------
When I heard the word - Approved...
I was so stunned! I got choked up and really didn't know how to respond or what to say.

It has been a long hard road. This all started in Nov 2014. (or should I say in the 70's), I thought the process would would be easy. NO, it certainly wasn't (silly me)! There were so many 'bumps' in the road - mistakes made, forms not sent/received, calls not made/returned, mis-communications, mis-understandings... the list goes on.

I made the decision to contact Support Path myself for the first time in January, just to talk and to find out what they do, etc.
I think I started the process with them in Feb, by first downloading the intake form.
http://www.mysupportpath.com/

If you are considering Harvoni, take the first step, don't wait for your doctor, nurse, insurance company.
http://www.harvoni.com/

Yesterday, when it hit me - approved!?! I must have spent almost an hour crying. It was a very cleansing cry - I didn't realize how stressed/burdened I was. I was so wiped out afterwards, I tried to get on the forum to share the news, but couldn't focus.

Blessings,
MG

Debula · « **Reply #16 on:** May 08, 2015, 11:53:15 am »

MG I am SO HAPPY to hear your great news! I have been thinking about you and wondering what happened. YAY!!
Do you know how long you were approved for?

I am so excited for you
Next week you will be a fellow Harvonian!!

Good luck with your TX

morning_glory · « **Reply #17 on:** May 08, 2015, 12:43:00 pm »

Debula,
Thank you! I will be on the 8-week regimen.
I did ask Support Path IF there should be a need to extend it - Do I have to go through the whole insurance mess, again? I was told, "no".

It looks like you are a few weeks ahead of me, how are you doing?

I'm looking forward to joining the Harvoni Club.

Blessings,
MG

BubbaT · « **Reply #18 on:** May 08, 2015, 12:55:31 pm »

Quote from: morning_glory on May 08, 2015, 11:07:57 am

Thank you sapphire101 & BubbaT!

Okay kids, here is the latest/current info -

May 5th - I faxed the 'Appeal Denial' to Support Path
May 6th - In the evening, a message was left for me to call Support Path
(Support Path also faxed an RX form to my doctor's office, for his signature)
May 7th - Called Support Path back in the morning, to hear - "You're APPROVED for Harvoni" !!!!
(My doctor's office faxed the RX form back to Support Path, in the afternoon.)
May 8th - I confirmed with Support Path, they did received the RX fax
I will be contacted by their Specialty Pharmacy to verify shipping info, etc.

Sooooo....by next week, I could be taking Harvoni (WOW)
This still feels sooooo verrrrry surreal.
-------------------------------------------------------------------------------
When I heard the word - Approved...
I was so stunned! I got choked up and really didn't know how to respond or what to say.

It has been a long hard road. This all started in Nov 2014. (or should I say in the 70's), I thought the process would would be easy. NO, it certainly wasn't (silly me)! There were so many 'bumps' in the road - mistakes made, forms not sent/received, calls not made/returned, mis-communications, mis-understandings... the list goes on.

I made the decision to contact Support Path myself for the first time in January, just to talk and to find out what they do, etc.
I think I started the process with them in Feb, by first downloading the intake form.
http://www.mysupportpath.com/

If you are considering Harvoni, take the first step, don't wait for your doctor, nurse, insurance company.
http://www.harvoni.com/

Yesterday, when it hit me - approved!?! I must have spent almost an hour crying. It was a very cleansing cry - I didn't realize how stressed/burdened I was. I was so wiped out afterwards, I tried to get on the forum to share the news, but couldn't focus.

Blessings,
MG

MG, so excited for U!
I can relate to the emotional release, it was the same feeling I had when I seen my first blood labs !

Albumin go up..and my UNDETECTED status, and my ammonia go back to normal.... I knew the Lord and the meds were working in my behalf....

Feeling well after so many years of fighting this devil i call Hepc
I got 17 pills to go...

Just like so many of us, we have come TOO far to turn back NOW!

morning_glory · « **Reply #19 on:** May 08, 2015, 02:08:47 pm »

BubbaT -
Thank you!

AWESOME to hear - 17 to go! <drum roll>

Blessings,
MG

morning_glory · « **Reply #20 on:** May 12, 2015, 10:33:19 am »

UPDATE -
So... I decided to follow-up w/ Support Path this morning, in regards to my RX. I found out my Doctor's office sent the form back to SP (5/7), missing some info & the Doc's signature!

I laughed, with tears in my eyes.

I then called Walgreens Specialty Pharmacy, since they originally were working as a go between with the doc, my Insurance and Support Path. I asked them to call my Doc to inquire about the lacking information/signature. They said they would.

Surprise-surprise... minutes later, the phone rings - it is WSP saying they 'found' a fax sitting on their machine, all filled out! According to WSP, they faxed it right over to SP. I did verify the fax number, just to be on the safe side, the number was correct.

Hoping to be able to get off this 'crazy train', and onto Harvoni soon...

I have to remind myself, in spite of the 'mis-takes', God's timing is perfect!

Blessings,
MG

Debula · « **Reply #21 on:** May 12, 2015, 02:21:09 pm »

Sheesh!! I was hoping to read the post that said you finally have it in your hands and are starting today. Well it looks like it will be soon now

Can't wait to see your post when you finally get it

gregj · « **Reply #22 on:** May 14, 2015, 09:14:58 am »

Hi Folks I tested positive for Hep C last year. After deciding not to use the Interferon treatment I am now on my way to India to find out what the process is for buying the generic Sofosbuvir being manufactured there. I am recording my experiences in a diary published at

www.hepatitisctreatment.homestead.com

I hope by sharing this experience with you it may help some of you get Sofosbuvir at a much cheaper price than is possible in most western countries (I'm from Australia where the price for a three month treatment is $90,000)

morning_glory · « **Reply #23 on:** May 15, 2015, 08:02:10 am »

Quote from: sapphire101 on May 05, 2015, 10:20:49 pm

PS keep at 'em Catladyx and Seekir you are next!

To:
Catladyx & Seekir - Any new updates? (Keep us posted)

morning_glory · « **Reply #24 on:** May 15, 2015, 09:02:48 am »

I should be getting my first bottle of HARVONI today (5/15/15) WOO-HOO!!!

On Wednesday (5/13/15), I called Covance Specialty Pharmacy. They are the Support Path Patient Assistance Program pharmacy. They took down all my info - Address, etc. I was told they would be sending it out that day, 2-day Express with FedEx, and I should expect it on Friday (5/15/15). Our FedEx isn't the most reliable delivery company, where we live. I got the tracking number, so I would be able to call FedEx, if they don't show up today.

>>> I thought of a question - Has anyone had issues with driving? Like if (or when) the fatigue hits, or other side effects?

Thank you one & all for your invaluable support, words of wisdom and sharing your experience with all of us on the forum!

Blessings,
MG

Debula · « **Reply #25 on:** May 15, 2015, 09:42:40 am »

Hi Morning Glory
I am so happy that you are getting your Harvoni finally today!! Woo HOOOOO!!

I can't seem to "wake up" in the mornings, so since I carpool to work with my daughter she has been driving in the mornings. I feel kind of "out of it" but I am sure I could drive if I had to. We leave the house about 05:00 AM and it is dark so since I feel like that she just drives. I drive home without any problems

Good luck with your treatment and may you beat the dragon once and for all

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Author Topic: Fighting for Harvoni: Tales of trying to get treatment (Read 24818 times)