Author Topic: Has anyone been denied treatment by Gilead's Support Path? (Read 76778 times)

morning_glory · « **on:** January 20, 2015, 09:01:59 am »

I am new here, but have been reading this forum for awhile.

Brief overview - In November 2014, my doctor prescribed Harvoni for 8 weeks. My insurance company denied it.
Then he prescribed Viekira Pak w/ ribavirin for 12 weeks. My insurance denied that, as well.
Both times, the letters, more or less, stated my numbers didn't meet their requirements for treatment. In other words "I'm not sick enough".
My doctor has sent an appeal letter to my insurance company for Harvoni, this week. If denied, again, my understanding is the next step will be Gilead's Support Path.
For the past 13 years, he has tried to talk me into trying different treatments, which I wouldn't do.
I have had HCV for approximately 40 years & have always chosen NOT to treat, because I didn't want to endure the side effects, and quite frankly was afraid to.
When my doctor told me about Harvoni, I felt there was hope in ridding my body of hep c. I was ready, especially, since the sides weren't going to be severe.

My question is - Has anyone ever been denied Harvoni, after following Support Path's requirements?

MG

Lynn K · « **Reply #1 on:** January 20, 2015, 01:54:23 pm »

I got Harvoni through my insurance but just want to ask you a question what insurance do you have? I have Express Scripts and that was part of the reason they said they were going with Viekira Pak so that all could get treatment so I am surprised you were turned down for Viekira. I mean you have hep c so what are you supposed to treat with?

I think a non response to your question would mean no one here has applied and been denied if that is the result you get to your question. As everyone's situation is different I would think the only way you will know if you would be approved is to apply.

Good luck I hope you are allowed a prescription soon.

apache · « **Reply #2 on:** January 20, 2015, 06:22:27 pm »

If you have money and a valid Rx, Gilead will not "deny" Harvoni. They're a capitalist company, and will always accept money. What they will do, however, is decline to offer it to you for the (amazingly low!) price that some others have received it.

In other words, if your combined household income is < $100k, then SupportPath will give it to you for $5/month.

But if you make >= $100k, they will give you a $23k monthly coupon to apply against the $32k monthly cost of Harvoni. Which means you pay $9k/month yourself. For typical 8 wk treatment, that means you end up paying $18k.

I'm basically in the same scenario as you.

CurlyGirlOhio · « **Reply #3 on:** January 21, 2015, 11:20:41 am »

morning_glory,
I'm in a similar situation. (Also new to post; have been reading for a while.)

After I delayed treatment since diagnosis in 1998, my doctor recommended Harvoni last December. I opted to wait to start until spring for various reasons. But I have Express Scripts and now the marketplace is different, so I will most likely be deemed "not sick enough." Also, for me, a 1a without cirrhosis, the ribavirin in the Viekira Pak is a deal breaker (for now).

I'm wondering if anyone has gotten Express Scripts, on appeal, to approve Harvoni over Viekira Pak for a 1a who's still at Grade 2/Stage 0? (I know that's pretty specific, but you all have such great input and suggestions!)

And apache, thanks for the clarification on SupportPath co-pay coupon! I'm not sure I want to spend $18k out of pocket since I don't feel that bad yet.

Lynn K · « **Reply #4 on:** January 21, 2015, 01:50:34 pm »

Hi Curly

Support path will pay for some people's meds in total if they qualify. I believe they need 2 denials and make less than $100,000.00/ year household income.

Why do you feel Viekira Pak is a deal breaker? It has a good four rate especially for those with less liver damage. Just more pills a day but many have done the treatment be cured so personally I wouldn't be in such a hurry to write Virkira Pak off the list.

Good luck

CurlyGirlOhio · « **Reply #5 on:** January 21, 2015, 07:14:41 pm »

Lynn K, my understanding is that if one is GT 1a, the ribavirin is necessary. And it's 12 weeks vs. 8 for Harvoni. Am I wrong about that info? (I would rather wait it out for a non-ribavirin option.) Thanks again for all the info!

Lynn K · « **Reply #6 on:** January 21, 2015, 10:55:48 pm »

Excerpts from the Harvoni prescribing information sheet that comes with every bottle the thin paper everyone throws away

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

2.1 Recommended Dosage in Adults
HARVONI is a two-drug fixed-dose combination product that contains 90 mg of ledipasvir and 400 mg of sofosbuvir in a single tablet. The recommended dosage of HARVONI is one tablet taken orally once daily with or without food [see Clinical Pharmacology (12.3)].

Table 1 Recommended Treatment Duration for HARVONI in Patients with CHC Genotype 1
Patient Population
Recommended Treatment Duration

Treatment-naïve with or without cirrhosis
12 weeks*

Treatment-experienced** without cirrhosis
12 weeks

Treatment-experienced** with cirrhosis
24 weeks

* HARVONI for 8 weeks can be considered in treatment-naïve patients without cirrhosis who have pre-treatment HCV RNA less than 6 million IU/mL [see Clinical Studies (14)].

**Treatment-experienced patients who have failed treatment with either peginterferon alfa + ribavirin or an HCV protease inhibitor + peginterferon alfa + ribavirin.

You are confusing with Vievira pak which requires all GT1a with or without cirrhosis and GT 1b with cirrhosis to take Ribavir1n in addition to Viekira Pak. The only Viekira Pak patients who do not require Ribavirin aer GT1b without cirrhosis.

Harvoni is normally just the one pill a day vs the 4 pills a day of the Viekira Pak plus the 2 additional Ribavirin pills for a total of 6 pills a day and for no less than 12 weeks.

While some patients may as quoted above treat with "* HARVONI for 8 weeks can be considered in treatment-naïve patients without cirrhosis who have pre-treatment HCV RNA less than 6 million IU/mL [see Clinical Studies (14)]."

So if your prescription drug provider approves Harvoni then no Riba I am just a difficult case so we a pulling out all the stops as I am running out of options and maybe time as well

Lynn K · « **Reply #7 on:** January 21, 2015, 11:00:53 pm »

Oh OK

After re reading you comment...

yes Viekira Pak requires Ribavirin and minimum treatment for 12 weeks while Harvoni does not use Riba an can be considered for 8 weeks.

I would treat to get rid of the virus if that was my only available option but that is up to you and your doctor. What if you can never be allowed Harvoni? How long do you want to wait?

But like I said that is just me based on my own experiences and perspective.

Good Luck whatever you decide

morning_glory · « **Reply #8 on:** January 22, 2015, 02:31:41 pm »

I have Express Scripts, as well, through BC/BS.
My doctor (back in Nov '14) said I would be getting Harvoni through the Walgreen's Specialty Pharmacy. WSP are the 'go between' with the insurance company & doctor. I guess they are the paper pushers, making sure everything is done correctly.

The first denial letter (for Harvoni) I received from my insurance company stated - "...the medication does not meet the criteria of "medical necessity"..."

The second denial letter (for Viekira Pak) said basically the same thing.
Here is an additional line from that letter - "Your health plan also requires the trial and failure first of Harvoni." I couldn't believe I read that, and had to read it again! I laughed & cried at the same time.

Funny thing is, I was never consulted by anyone (not even my doctor), as to whether I wanted to take Viekira Pak, which would include taking ribavirin! You have got to be kidding me, I am the patient paying for the insurance!

UGH, I am so mad, at the whole crazy way things are done now! Thanks for letting me vent, a bit.

I did speak to someone at Support Path & printed out the intake form. I am waiting to get all or most of the information together, so I can move forward with them. I did ask if they deny Harvoni based on the bloodwork, etc. I was told if you have Hep C, you will get the medicine. I sure hope that is a true statement.

At this time - I am patiently waiting on a response from the appeal letter sent to the insurance company for Harvoni. I understand it isn't in their formulary any longer, but that is what I am willing to take.

MG
------------------------------
Most of you may have already read them, if not, they may be helpful to you...
Some helpful links:

http://blogs.hepmag.com/lucindakporter/2015/01/harvoni_versus_oysio.html

http://www.hepmag.com/articles/treatment_landscape_2502_26704.shtml

Lucinda Porter, RN, posted this on December 03, 2014
http://forums.hepmag.com/index.php?topic=1824.0

Red Hen · « **Reply #9 on:** January 22, 2015, 04:15:50 pm »

I got the Viekira pak with ribavirin on a drug trial and felt lucky to get it! At the time, BCBS was not paying for any of the new treatments. BCBS has gotten pretty bad about paying for anything, not just HCV. I think part of my being grateful is that whether or not I get cured, I have sure learned a lot. Sometimes I wish I had been able to get Harvoni but, wouldn't have wanted to go bankrupt for it. I think the side effects of ribavirin probably vary. Good Luck to everyone on finding appropriate treatment!

morning_glory · « **Reply #10 on:** January 22, 2015, 04:42:30 pm »

To add to my post above...
You are just going to love this! (sarcasm)

I received a letter in the mail today, informing me - "We know how important it is to get your specialty drugs. Our records show that you are filling a specialty drug at a retail pharmacy..." ..... "Before your next refill, please switch the drug listed below to Accredo: Moderiba (ribavirin)"

Ok, so I am filling a drug which I can not take without the drug I was denied for?!?!?!
OH, MY GOSH... does the madness ever stop!?!?!

CurlyGirlOhio · « **Reply #11 on:** January 22, 2015, 08:06:59 pm »

morning_glory, it's just so ridiculous, isn't it?!?! On a separate issue, I recently paid for a minimally invasive, in-office, low risk procedure out of pocket, because my insurance co. would only pay for the full-blown surgery that carries with it higher risk of infection, a large scar and a MUCH higher price tag. So illogical! So I don't hold out much hope on this issue. (PS Thanks for letting me highjack your thread with my questions.)

Lynn K, thank you again for the wealth of information -- I feel better prepared for my next dr visit -- THANK YOU!!

Another question: I have Cigna for medical insurance and Express Scripts for medication. Any recourse going through Cigna directly if Express Scripts won't approve Harvoni on appeal? Or does that depend on our employer's benefit plan?

morning_glory · « **Reply #12 on:** January 22, 2015, 09:52:15 pm »

CurlyGirl,
I appreciate you sharing this thread; it helps us not to feel so isolated in this crazy insurance stuff! I would have probably done the same thing you did, opting for a low risk procedure, etc. I am so amazed at how twisted they are at approving some things and not others.

To answer your question: Yes, it does depend on your employer's benefit plan. From the different posts/forums I have read, I have found each insurance company has various "rules"... and it can also vary, from state to state. I am not at all an expert and there may be others here, that could give you better advice or direction.

In my situation, after my my first denial letter, I called BC/BS and talked with a customer service representative. More or less, they weren't the decision-makers on approving my script. At least, that is what I'm learning from my situation.

I did ask the BC/BC rep, "What if this was your mother, child or loved one needing this medicine and they were denied?" Reply - "I understand."

Sometimes, I just want to pick-up the phone and scream at these clueless policy makers!

Ultimately, I am hoping to be able to get Harvoni from Support Path, using the $5 coupon offer. http://www.mysupportpath.com/

CurlyGirlOhio · « **Reply #13 on:** January 22, 2015, 09:57:06 pm »

I will keep my fingers crossed for you, morning_glory!!

Lynn K · « **Reply #14 on:** January 22, 2015, 10:11:19 pm »

CurlyGirlOhio

Express Scripts is the gate keeper although they did more than once misinform me it was BSBC decision they have the pre approval protocol. I am going to copy a post I did else where about my struggle last November to obtain coverage. I have found the inside track to "work" with express scripts I suggest you may want to send them an email to plead you case to an actual human.

Here is the magic email address:
ExpressRxHelp@express-scripts.com

I have see at least 3 others here who were also able to cut through the red tape and get Harvoni.

Hi All

I made a comment to an article on the express scripts site

http://lab.express-scripts.com/insights/specialty-medications/reducing-failed-hepatitis-c-therapies-by-half

They responded and asked me to e mail them with my contact information to ExpressRxHelp@express-scripts.com

So I did and sent them a summary of my medical history some comments about Sovaldi relapse vs what they had me labeled as a null or partial responder to Sovaldi alond with supporting links for the clinical trial I got here about Harvoni for Sovaldi relapse patients and other pertinent links.

My closing comments:

My personal feeling that Express Scripts cares more about their bottom line that the health of its subscribers. That your company is gambling with my life in the hope that later treatments like the AbbVie 3D combo will come in at a lower price point.

I am frustrated to the point of considering contacting my local media to bring to light my distress with my Express Scripts experience and their cavalier, indifferent attitude toward its customers and their health.

I said they could reach me after 10 am PST.... they called at 10:01 a manager at Accredo Express Scripts

I am approved for 24 weeks of Harvoni my first bottle is being sent Fed Ex over night I should have it before 10 AM tomorrow!

Good luck Curly!

morning_glory · « **Reply #15 on:** January 22, 2015, 11:26:47 pm »

Lynn,
I remember reading your post before, not sure when.(I sometimes forget details.) Way to go!
Thank you for posting it here. Loved reading it, again!
Tomorrow, I hope to get an opportunity to check out the Express Scripts site.

If you don't mind me asking - What did you end up having to pay out of pocket?

Lynn K · « **Reply #16 on:** January 23, 2015, 12:43:36 am »

I pay $5 a bottle. I have the Harvoni coupon otherwise it would be $20 a bottle. That is the price through Express Scripts home delivery.

If I got it through a pharmacy I would pay $12,032.45 for the first fill, then $40,108.18 for each additional.

ExpressRxHelp@express-scripts.com is not a site it is an email address gets you to a real person not someone who cannot pronounce Sovaldi, Olysio, Ribavirin, Harvoni or cirrhosis. It is scary talking to the people who answer you calls there.

And I make too much to qualify for their support package if you can't get your insurer to cover the meds. But I still get the coupon.

Roger · « **Reply #17 on:** January 26, 2015, 05:28:54 pm »

MG,
I've got some input for you - regarding dealing with insurance companies, but first, give me a little idea about your past health record, and what stage you are (HCV). I see that you are 57.

SickTired1 · « **Reply #18 on:** January 27, 2015, 07:27:29 am »

My experience with Patient Support Path: After applying, I received a letter saying I was ineligible due to income being over the limit. However, next I was told by my clinic to call and inquire about appealing, which I did. The initial denial letter said nothing about any sort of appeals process, but it does exist. Imagine my surprise when the Gilead rep said to "ignore the letter" and that my application had actually been moved on to the next level of review. Next thing I know I'm being asked for more financial information (details of monthly expenses). Outcome: Approved for Patient Assistance, at zero cost, even though income was over the limit. It took about a month.

Advice: Whenever you fax something, make note of the date and time. It is important to call and confirm they received your fax. The phone reps I spoke with actually went through the computerized system to search for it, and then moved my application through the pipeline. Never expect that your fax will be matched up to your application. It can get confusing. Every time I called they gave me a different reference number even if I was responding to one of their calls, with a different reference number. Those numbers seem to be more like "encounter" numbers but don't really have anything to do with your file. Your name, your DOB, and the date and time you have sent faxes are key.

I hope this info helps.

Lynn K · « **Reply #19 on:** January 27, 2015, 03:37:56 pm »

Hi Sick Tired

I agree whenever I sent a fax I always try to confirm it was received probably 3/4 of the problems I had getting approved resulted from fax messages between my doctor and express scripts not being received.

I guess I am perhaps annoying proactive I ended up calling ES to see if they had received the fax they said no so I call my doctor to let them know. Then checked back with ES to make sure they had it this time.

Yes when the person on the phone at support path said $100,000/ year I said well that leaves me out she said it could be appealed fortunately ES finally paid for the meds so I didn't have to go that route.

Congrats on your approval sad that we have to fight the system as well as our illness.

Red Hen · « **Reply #20 on:** January 27, 2015, 03:58:05 pm »

Couldn't agree with you more, Lynn. It is sad that so many sick people have to deal with a sick system.

SickTired1 · « **Reply #21 on:** January 27, 2015, 11:23:15 pm »

Advocating for ourselves becomes a full time job. I worry about those who don't have the wherewithal to negotiate the system. Also, I had the UCSF Liver Clinic staff backing me up, which is a major ally.

Now I have my meds. if I was a really good person I'd be volunteering as an advocate somewhere. Not too late, I guess. But I definitely need to get back to an energy level that is above slug setting! Still working but hanging on by fingernails.

Stay strong, people!

Can't figure out how to put little history in signature, so here it is:
Probably have had virus for over 40 years.
Dx 2013
First Tx 2014 - 48 wks Peg Int/Riba/12 wks Telaprevir. Came back first month after tx.
This is a very wimpy hx compared to many of you with multiple treatment failures. You are truly heroes.

Kathleen

Red Hen · « **Reply #22 on:** January 28, 2015, 04:52:39 pm »

Thank you, Kathleen. It seems like so many conditions require us to become insurance specialists. Wishing you the best.

Roger · « **Reply #23 on:** January 28, 2015, 06:41:15 pm »

Speaking of becoming an insurance specialist... I posted this in another section. Maybe this is an appropriate section to post it in too...

Frankly, I think that most doc's offices do not know how to write up a decent request for the insurance companies. Ditto when it comes to writing up an appeal.

They leave out important medical history facts (about you), they take things for granted (like the insurance companies have ESP), they don't "elaborate" on your medical problems enough, and so on. All too many doc's offices treat this like they are writing a regular prescription. Getting a $94,500 12 week prescription ok'd is A LOT different than getting something approved for a headache! Yet most of these people, doing your paperwork, treat it as such.

You have got to be "proactive" (and polite - but assertive).

First - call your insurance company's customer service line and get the exact department's name and fax number that your doc must use, when submitting your paperwork. This is important, as the insurance companies tend to play games here, and will stall your order for days.

You have got to have your short list of personal medical issues in hand and "talk" directly with the person in your doc's office that writes up the paperwork. Do not assume that they understand your situation. Your file may be thick enough that they will not read it all - and they will leave out something important to your success of being approved. Many prior illnesses will disqualify you for the cheaper - dangerous treatments. Use your medical history to your advantage. It's your life!

You then have to ask that person in your doc's office "when" (date and time of day) she/he is going to fax the paperwork and to "what" fax number and department at your insurance company. If the department and/or fax number differs from what the insurance company told you - correct her/him. Doc's offices get this wrong ALL THE TIME, and the insurance company will stall your order to the legal limit of the law - without letting you know.

On the date your doc's office told you, and 30 minutes after the time they told you - call them and ask them if they have faxed your file to the insurance company yet.

Follow-up, Follow-up, Follow-up! And be polite, but assertively proactive. Remember, this means more to you than it does to them. It's your life.

If they haven't done it yet, ask them why, and when they plan on faxing it. Explain to them that you want this info because you are going to follow-up with the insurance company and need to know that they have sent it before you call the company. Ask her/him to call you just as soon as it's faxed so you can begin the follow-up process with the insurance company.

Once the insurance company has the info, give it 15 - 30 minutes and then call customer service. Tell them that your file is there and ask them to check and verify it for you. If they play the "wrong fax or department" game with you, ask him/her to call your doc's office and straighten it out for you. Have your contact's name & direct number ready, and get ready to be on hold a while.

These steps are important, as these people play games everyday. Everyday they stall you - it's money in their pocket.

Be polite and be proactive - it's your life!

You can also usually check on your insurance companies web pages what their criteria is for approving Harvoni. Many companies have a Stage 2 criteria, but "try" for Stage 3. Check it out, as it can help you in the long run!

Red Hen · « **Reply #24 on:** January 29, 2015, 10:56:14 am »

Good advice, Roger.

morning_glory · « **Reply #25 on:** January 30, 2015, 11:50:44 am »

Quote from: Roger on January 26, 2015, 05:28:54 pm

MG,
I've got some input for you - regarding dealing with insurance companies, but first, give me a little idea about your past health record, and what stage you are (HCV). I see that you are 57.

Roger,
So sorry for the long delay, in answering your question... Life Happens.
I believe I acquired Hep C, sometime in the mid 70's.

After donating blood in the mid 90's, I received a letter stating I have non- A/B Hepatitis. I went to a GI doc & he told me I "have antibodies". So, I thought it was a good thing, like when you get the measles/chick pox, etc. Nothing was mentioned about following-up with him or anyone. So, I continued on with raising a family, working, etc. Not sure exactly when I realized it wasn't a good thing!

Fast forward - about the year 2002, my PCP doctor told me I should see a GI doc and have my HCV checked out. After seeing the GI, he wanted me to try the 48+ week treatment(s). I wasn't willing to, at all. I don't think he was very happy about my unwillingness. I remember him saying my numbers aren't that bad, and I would most likely die from something, other than liver related stuff.

I have continued to see him 2x's a year. In 2014, he was so excited about the new drugs that were coming. After convincing me, the sides weren't bad & the length of treatment was much shorter, etc. I said I was now ready. Mostly ready for less fatigue & hopefully to have a life, I could fully enjoy... and not feel so old.

Liver, Core Biopsy (6/2004) -
Chronic hepatitis consistent with hepatitis C
Inflammatory Activity Grade 1-2 (portal and lobular chronic inflammation with focal mild limiting plate necrosis)
Fibrosis Stage 1-2 (mild portal and focal periportal fibrosis)
Mild to moderate macrovesicular steatosis

Bloodwork (2014) -
Chronic hepatitis C without mention of hepatic coma
HCV Genotype - 1a
Hepatitis C Quantitation - 436,120 IU/ml
AST - 34
ALT - 41
HCV FibroSURE - Fibrosis Score F0 (0.12 Stage 0 - No Fibrosis)
Necroinflammatory Activity Score - .22 / Grade A0 - A1

I will admit, I am somewhat embarrassed, feeling guilty and at the same time, grateful my numbers aren't "bad".

I DO know this - My quality of life has gone down hill over the years - fatigue is the worst of my issues (naps are my friend), forgetfulness/fuzzy thinking (brain fog?), muscle/joint aches, sometimes low-grade fever, no real appetite, I never feel well-rested, etc., etc. I have pretty much excepted, that is just the way it is. I really miss the active life I once had and enjoyed. If I have a busy/full day, the next several days are used for recovering some energy. I make 'excuses' to others, when they invite me to do things.

I miss spending days working in the "yard", we live on a mountain - so yard work isn't like in the "burbs".
I miss so many other things... I'm crying now, just thinking of all the things I use to have the stamina for, even just a few years ago.
(We also have been raising our granddaughter, for about 7 years)

So, instead of focusing on all the "sad" stuff, I do what I'm able to and try to pace myself.
Prayer & a positive/grateful attitude, gets me through the day.

Currently, I am waiting to see if my insurance will approve Harvoni (Denied once). My GI doc sent an appeal letter, so we'll see what happens next. If I'm denied again - I will go through Gilead's Support Path.

Sorry for the long "reply".

I thought of doing a new post - "Do others have low numbers, but deal with HCV symptoms?"
(I'll wait to see if anyone replies on this post, in regards, to that question.)

Thank you for listening and letting me share.

Blessings,
MG

Roger · « **Reply #26 on:** January 30, 2015, 06:46:19 pm »

MG,
Your low numbers will be a problem, I'm sure. It looks like your biopsy says stage 2 yet your FibroSure says stage 0. Is that correct? Stage 0 - 1 usually makes the insurance companies laugh. "You'd" like to rid the virus from your body, but the insurance companies don't care at that stage.

If you are at stage 2, you have a MUCH better chance of getting Harvoni. You can look on the webpage of your insurance and find their criteria usually. Stage 2 was ok with my Blue Cross.

The companies want you on the old Tx, which is cheaper for them, but difficult for you. To force your hand, you have to play all your cards. Most doc's don't have a clue about this. "If" you have any auto immune problems (you can not have typical
interferon based Tx when you have auto immune disorders) you can probably get
approved - but your doc has to be aware of this.

"If" you have any sort of depression documented at your GP's office, that could help you get Harvoni, as Interferon and depression do not mix.

Any history of depression "in your family" might help, any auto immune problems "in your family" might help, if you don't have either.

History of personal or family cancer might help in your appeal too.

Telling your doc that your joints ache & your memory is foggy (symptom's of chronic HCV, which means things are progressing for the worse) helps and he/she has to write it in your paperwork.

Most doc's write an original and the appeal as if they were writing a prescription to Rite-Aid. Big mistake! With a $+90K drug, it takes a little more than that!

morning_glory · « **Reply #27 on:** February 04, 2015, 10:49:31 pm »

Roger,
Quick response to your last post...

After reading what you said on how doctors write their appeals. I decided to have my GI office send me a copy (or copies) of what they have sent to my insurance company. I'm very interested in reading how the info was presented.
It took me several emails, to get the nurse (at my doctor's office) to understand what I wanted.

To answer your "ifs" - depression is an issue, and carcinoma in situ (2011), which all have been documented.

So, we'll see what the doctor wrote to my insurance company.

Blessings,
MG

Roger · « **Reply #28 on:** February 04, 2015, 11:14:44 pm »

MG,
It 'will' be interesting to see! You never know, they may have known what to do - but my money's not on it...

As a side note... I had moved 300 miles away from my hepatologist and interviewed 2 different hepatologists around here, as it would have been easier to see one here. I talked most specifically to the 2 candidates about their skills in getting expensive drugs approved. I also talked to a person in each of their offices who actually does the paperwork and appeals.

Bottom line: Both doc's said they 'just write a prescription'. I then asked them about appeals, and they answered the same! Ditto for the 2 office people who do the actual 'paperwork'. I asked each of them the hard questions, and thank God they had the integrity to answer truthfully. I'm sure plenty of doctors would have answered differently, just to increase their billable hours. I got lucky.

I stayed with my original clinic, and held their hands through the process. They actually had a good grip on the process, and were receptive to my suggestions. Again, thank God! It's time consuming and we shouldn't have to do it as we put our lives in these medical professionals hands - but we "do" have to do it. It's our lives!

Red Hen · « **Reply #29 on:** February 06, 2015, 10:54:08 am »

Roger, I appreciate your informative posts about how to advocate for ourselves. It is such a lot of work but everyone is helped by your sharing your expertise and experience!

Roger · « **Reply #30 on:** February 06, 2015, 02:44:10 pm »

Red,
Advocating for oneself is hard to do, but it beats the alternative!

Red Hen · « **Reply #31 on:** February 06, 2015, 07:28:29 pm »

I couldn't agree more!

Roger · « **Reply #32 on:** February 06, 2015, 09:47:32 pm »

Red,
I learned most this stuff after having a bout with kidney cancer in 2002.
I learned real fast that - as educated as everybody is in medicine, nobody had more to gain or lose than me. I began with the people in scheduling... those people can kill you, if you fall into their scheduling policies! Sometimes you want to yell & scream, but you have to be kind & polite and remember the word 'assertive'.. Most time it works.

morning_glory · « **Reply #33 on:** February 06, 2015, 11:09:56 pm »

Roger,
Oh my, kidney cancer!? I am so sorry to hear that. It so frustrating, to deal with the people you need to help you, to survive. I am sure you had to work hard, to get the proper help. "Sometimes you want to yell & scream...". I wish it was okay to do that. I'm so glad you persevered and got the help you needed. Through your experience, you are now able to help and encourage others to advocate for themselves.

I understand, a bit of what you may have gone through. I had to push to get a colonoscopy in 2011, even though I had symptoms to warrant it. Thank God, someone finally listened. They found polyps and carcinoma in situ. I was so very angry and cannot believe it took so long to be taken seriously.

Red, ditto!

Roger, thank you

Blessings,
MG

morning_glory · « **Reply #34 on:** February 23, 2015, 12:44:25 am »

Roger -
"MG,
It 'will' be interesting to see! You never know, they may have known what to do - but my money's not on it..."

About the appeal letter - After many emails to my doctor's nurse, she finally sent me a copy of the letter. I was shocked to see my viral load was soooo incorrect! (Much much lower, by 400,000)

While waiting for the appeal letter (from the doctor's office), I decided to contact my insurance company, hoping they could send me a copy. Much to my surprise, they couldn't locate the letter! The person I spoke with, even had her supervisor looking for it.
That could now explain why I never got a second denial letter - The appeal letter was never sent, or got lost in never never land.

I will be spending some time writing down some facts, in a (hopefully) logical way and asking my doctor some questions on this whole mess.

Someone needs to explain to me, how such a thing could happen. And that "someone " should be my doctor.

MG

Lynn K · « **Reply #35 on:** February 23, 2015, 02:17:22 am »

I spent a lot of time on hold with express scripts and calling back and forth between my doctors office and them to make sure documents needed were faxed and making sure they were received. Seems like the doctor's office sends stuff but somehow never gets uploaded to my file at express scripts and they say it was never received.

Sometimes I wish I could hand carry docs between offices to make sure what needs to happen actually happens

Roger · « **Reply #36 on:** February 23, 2015, 01:40:33 pm »

MG,
Good you did your own follow-up!

It is so typical. The doc's office makes no money sending in a correct prescription or an appeal. Once the hepatologist has his/her consultation with you, there is no more money for them to make until the next consult, and most the hepatologists are really gastro doctors - and there is a WHOLE LOT of money to be made, every day, doing endoscopy's & colonoscopy's (vs haggle with insurance companies).

I talked to 2 other gastro offices (I was thinking about changing gastro clinics) about their experience and how they write the initial prescription and then how they write an appeal... In both cases, for both areas of necessity, they didn't have a clue what or how to do it! No wonder so many Harvoni prescriptions fall through the cracks.

And 'god forbid' YOU call and question them! It is imperative that everyone get a crash course in follow-up skills, for their own self preservation. Nobody on the other end has as much to lose or to gain than you (us).

Did the insurance company actually not receive your paperwork? Don't know. 50/50 chance they were gaming you, but to stick to a strict follow-up regiment can save the day, that's for sure. Its difficult for all those folks who do not understand this about our medical system...

Roger · « **Reply #37 on:** February 23, 2015, 01:45:32 pm »

Quote from: Lynn K on February 23, 2015, 02:17:22 am

Seems like the doctor's office sends stuff but somehow never gets uploaded to my file at express scripts and they say it was never received.

Lynn, Good thing you understand the art of follow-up!
Frankly, I would ask Express Scripts for the exact fax number and department name (and try to get the receivers name, but that one is difficult) that my doc is suppose to use. I would then call the person at my doc's who is doing my paperwork, and ask them the department name and fax number. I would then check their answer against my new intel. If it is different, I would give that person the correct info and express the situation to him/her.

The doc's office is lazy, inexperienced or both.
Express Scripts is just a scoundrel, that has to be tamed!

Red Hen · « **Reply #38 on:** February 23, 2015, 05:07:23 pm »

Oh, goodness, Roger. I missed your post about kidney cancer. I'm sorry. My previous experience with Express Scripts had to do with miscommunication about a prescription for a hormone cream many years ago. I quit using them as a result. But, that was not the same as having a life threatening condition and being dependent on them to fill my Rx. properly and promptly. It sounds like they are still as disorganized as ever.

morning_glory · « **Reply #39 on:** February 24, 2015, 12:10:26 am »

Harvoni Soap Opera -
(I'm sorry if any of this is a repeat, or doesn't make sense)

When I went to my GI doc in November of last year. He told me then, don't worry, you will get Harvoni... "I use Walgreens Specialty Pharmacy to work with your insurance company..."

I guess it didn't connect in my brain exactly what they do for him, until today. WSP "processed" all the paperwork to my insurance company, & they even wrote the appeal letter, then had him sign it. I found this out when I called WSP today to ask them a question. I decided to mention the VL # being wrong. The "pharmacist" (Erica) said it didn't matter because my insurance company wasn't going to approve it any way. That is when it hit me, they are the ones doing it all. Erica said at this point "we" are going with Support Path. I asked her about needing 2 denials and an appeal, etc. for SP. She said we do have 2 denials (1 for Harvoni & 1 for Viekira Pak). I then asked "doesn't it need to be 2 denials for Harvoni?" She didn't know and said she was still learning how this all works, and she'll have to ask the Gilead Support Path manager that comes in to help them. (I'm wondering if it is a pharmaceutical rep)

I then let Erica know - I have already faxed my Intake form and all the papers I needed to, along with the appeal letter from the doctor's nurse to Support Path. They have already given me a case #. Of course Erica was more than happy to write that # down. (Hopefully, correctly, unlike the VL)

So, that is the story, as of today...and subject to change, depending on who I talk with next.

I don't know if what I wrote makes any sense...there was so much more I could have included (from the pass several weeks), but it would have been too confusing to write out all the details.

MG

PS - to all, thanks for listening... This is sometimes the only place we can come to vent/share.
Each one of you are so understanding & supportive to everyone

Danster · « **Reply #40 on:** February 24, 2015, 10:29:39 am »

In November '14 I was denied by my insurance company for genotype 3. Apparantly I didn't meet their protocol for a stage 3 or 4 fibrosure score. My dr. submitted the prescription twice, got denials both times, then we appealed which was also denied. I contacted Suppoort Path. Last week I got a call that I was approved for free Sovaldi. I have to see if my insurance company is going to approve the Ribavirin. I was prescribed a 24 week treatment. I am hoping UHC will approve the Ribaviron because on top of a $600 insurance premium, I cannot afford to self-pay for the Ribaviron. I guess where there is a will there is a way and I don't want to put the cart before the horse, but am trying to develop some other options in advance. I don't have alot of faith in my insurance company. They don't want to help unless I am on death's door-step. I get it. Insurance is a "for profit" business, but over the long-run treating hep c ebfore it gets any more rampant than it already is makes MUCH more sense! I don't know of anyone who meets Support Path's criteria that they have turned down for help… I wish you the best. Stay on point and follow through.

Roger · « **Reply #41 on:** February 24, 2015, 11:10:46 am »

Quote from: morning_glory on February 24, 2015, 12:10:26 am

'My GI doc told me, don't worry, you will get Harvoni... "I use Walgreens Specialty Pharmacy to work with your insurance company..."

I guess it didn't connect in my brain exactly what they do for him, until today. WSP "processed" all the paperwork to my insurance company, & they even wrote the appeal letter, then had him sign it.

MG,
Something sounds a little screwy here... I asked my doc where I should go to get my Harvoni, once my insurance ok's the prescription. He gave me 2 names of specialty pharmacies that his office has used. He said Walgreen's is the easiest to work with and recommended that I go there, etc.

He wrote my prescription and it was his staff that arranged all my paperwork, history & prescription, and then they submitted the package to my insurance company.

I haggled with my insurance company, as they played games with my file, but soon had it all straight and my insurance company approved my prescription and asked me which Specialty Pharmacy I want to use. My insurance company then sent my ok'd prescription to Walgreen's.

I do not understand why your doc didn't do your initial communication with your insurance company...

Roger · « **Reply #42 on:** February 24, 2015, 11:17:02 am »

Quote from: Danster on February 24, 2015, 10:29:39 am

Last week I got a call that I was approved for free Sovaldi. I have to see if my insurance company is going to approve the Ribavirin. I was prescribed a 24 week treatment. I am hoping UHC will approve the Ribaviron because on top of a $600 insurance premium, I cannot afford to self-pay for the Ribaviron. I guess where there is a will there is a way and I don't want to put the cart before the horse, but am trying to develop some other options in advance.

Danster, Go to the Patient Access Network webpage (http://www.panfoundation.org/) and contact them regarding getting help to pay for Ribavirin. They have funds to help with this type of problem!

BDK · « **Reply #43 on:** February 25, 2015, 09:44:57 pm »

Morning Glory - I am so sorry for the shenanigans, and without repeating my whole story, can totally understand the frustration. Support path denied me very quickly, based on total household income of >$100,000. The person who called me (and I later got an unsigned form letter) didn't tell me I could appeal, but I knew that from this amazing forum. if you get denied, ask to speak to a manager 9insist), and discuss with the manager, and tell him or her that you want to appeal, if they do not bring it up to you. then you can write a letter saying why paying $94,000 would be a financial hardship, attach a spreadsheet or something similar, outlining ALL your expenses, and fax that to them. I did that a couple of weeks ago and am still waiting to hear the result, but according to the woman at the specialty pharmacy I am working with, it has worked for some.

Also, this is still all new for all these specialty pharmacies - Harvoni has only been out since October 2014 after all. I really think we will see changes in this whole operation over the next few months/year, to our benefit.

morning_glory · « **Reply #44 on:** March 01, 2015, 11:36:02 pm »

BDK - Thank you pointing it out, about this all being so new to the speciality pharmacies. I hadn't thought of it that way.

Well, I was all ready to ask my GI doc about the incorrect VL on the appeal letter & other things. Then my appointment was canceled due to snow. The next available is April 1.

I talked with Support Path last week, it looks like they have all they papers they need to move forward, on approving Harvoni. My case is now going to the next step - 'Application to be reviewed' department. I asked SP about the 2 denials, if they both needed to be for Harvoni. I was told no, so I was happy to hear that. Woo-hoo!

I feel like this advocating is such an emotional roller coaster. You want to trust what you are told, and sometimes you find out otherwise. It is so frustrating, not knowing, if they even know what is going on. The other day, I literally spent 2 hours on the phone with the insurance company, being transfered from one person/department to another... it ended up being a complete circle. Looking back now, I realize I was so determined to get some answers, I think I was getting obsessive.

I should have gone outside and played in the snow instead, it would have been a lot more fun.

MG

BubbaT · « **Reply #45 on:** March 01, 2015, 11:47:56 pm »

Roger, thank you for being here, it's people like you that make a huge difference in this life and death struggle with insurance companies and staff people.

You have been there and done that and let me say for All of us, We Salute you!

thank you a million times!

Danster · « **Reply #46 on:** March 02, 2015, 08:10:36 am »

Roger, I too wanted to say thanks. I have an application for some help on the Ribaviron. The cost at the pharmacy for 28 day supply is $1000. My girlfriend went online and located a Walgreens discount coupon which reduced that cost to $122. That's significantly more manageable. I am just trying to weave my way through the cost maze for a solution to make it financially workable. Hopefully Gilead's specialty pharmacy will ship my sovaldi this week and I can get tis 24 week treatment started.

Roger · « **Reply #47 on:** March 02, 2015, 10:58:45 am »

Bubba, Thanks for your kind words. I'm glad to help, where I can!

Danster, best of luck with that coupon with Walgreens. I did not know that
they have a program available. You might want to post a little about it so
others can take advantage of it.

earthwarrior54 · « **Reply #48 on:** March 02, 2015, 11:58:22 am »

After being denied twice by my insurane company CDPHP of NY I applied to Support Path. I was careful to provide all required documents & follow up. One week after applying I was approved! They told me that was a record! Within a few days I had my Harvoni. If anyone has questions or needs help please feel free to ask I will help you anyway I can.
Also: please read my new post about "slaying the dragon"

Danster · « **Reply #49 on:** March 02, 2015, 12:29:39 pm »

You got it, Roger!

The website below has a coupon which dramatically reduces your out of pocket cost for Ribaviron. My insurance wouldn't cover it or Sovaldi. Gilead's Support Path helped me with the Sovaldi. The coupon offer from Good RX dropped my self pay cost for the Ribaviron from $1000 to $122 for a 4 week supply. For those of you who may also need help with this, please see the link below:

http://www.goodrx.com/ribavirin

morning_glory · « **Reply #50 on:** May 05, 2015, 02:03:00 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

FutureThinker · « **Reply #51 on:** May 08, 2015, 01:57:24 pm »

I'm a new as of today, in the appeal process for Harvoni, and just needed to say a big thank you for all of this incredibly valuable information!!!!! I feel much more empowered for this battle after reading all of this today.

morning_glory · « **Reply #52 on:** May 08, 2015, 08:59:03 pm »

FutureThinker - Welcome to the forum! You will find many wonderful people here!
Praying for your appeal process to continue in the right direction!

I posted this earlier today, under "Topic: Fighting for Harvoni: Tales of trying to get treatment"... (if re-posting is 'uncool', someone, please let me know)

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

FutureThinker · « **Reply #53 on:** May 08, 2015, 09:32:05 pm »

Hi morning glory and thanks for the reprint. I had a long talk with my dr's ins. person this afternoon and told her we need to be 1) focused, 2) tenacious and 3) creative in this appeal process thing. I downloaded a lot of advice/info from this site today and plan to "study up" on the different ideas/methods. I will then call her next week and we can discuss what she's tried before, etc. It sounds like she is the primary one at my dr's office that deals with the insurance nonsense, moreso than the MDs, so I plan to help/assist her as much as I can. And you all are such a blessing for your input!! I have not yet contacted Gilead's Support Path, due to waiting on the ins. answer to the appeal, but that will definitely be on list.

I actually felt better after posting earlier today, just feel like there is some very good & much needed support here, now that I'm in the thick of this fight. Again, thanks!

morning_glory · « **Reply #54 on:** May 16, 2015, 12:01:55 pm »

Just took my first Harvoni pill @ 11am... 1 down, 55 to go!

In honor of "Armed Forces Day" & my Dad, who served Honorably in the Air Force...
I thought what a great way to start my battle with the Hep C virus, than today.

Thank you to all the men and women who are serving, or have served in the United States’ Armed Forces!!!

Blessings,
MG

>>> The above post is actually under the "On Hepatitis C Treatment" <<<
http://forums.hepmag.com/index.php?topic=2764.0

Hope to see others posting "On Hepatitis C Treatment", as well, as you get approved for treatment!

(I just wanted to give an update here, since I had said I would "keep you posted".)

outfitter01 · « **Reply #55 on:** May 21, 2015, 05:37:52 pm »

MG: my situation is very similar to yours, in my case my doctor took two weeks to send a prior authorization, a month to send a second prior authorization, and from what I understand the insurance denied because they were waiting on additional records....UGH! This has been so disapointing.
As of today I filed my own appeal and I am awaiting the results of my appeal, supposedly Gilead will cover the treatment for me if I am denied a third time!

Thanks for posting it gives me hope!

I personally never want to go to that doctors office again! Roger is right about how some docs just right a prescription.

FutureThinker · « **Reply #56 on:** May 21, 2015, 08:10:24 pm »

Hi Outfitter01, I am still "strategizing" for my 2nd appeal to insurance before I see my doctor next month. I think they (medical staff, MDs, RNs, etc.) are all busy, especially since Harvoni and Viekira were approved, and need some "help" from us patients to get the wording as good as it can be. We shouldn't have to do this, but it is our health, not theirs, and we live in a day and age where patients must advocate for themselves and be involved! Don't be afraid to call them up and respectfully talk to them about your concerns. Respectful dialogue should be welcomed. Consider trying to get them to call Gilead (and give them the #!) for some guidance on getting approval. My thoughts are with you!!

sapphire101 · « **Reply #57 on:** May 22, 2015, 12:19:57 am »

MG you got your treatment! Congratulations - I have not been back to this post for a while and I am very glad that you were able to get through all the hoops. I will be sure and check in on you on your other posting in the "on treatment" group.

You are starting on Armed Forces day....what day is your end of treatment?

morning_glory · « **Reply #58 on:** May 22, 2015, 07:43:12 am »

Quote from: outfitter01 on May 21, 2015, 05:37:52 pm

MG: my situation is very similar to yours, in my case my doctor took two weeks to send a prior authorization, a month to send a second prior authorization, and from what I understand the insurance denied because they were waiting on additional records....UGH! This has been so disappointing.
As of today I filed my own appeal and I am awaiting the results of my appeal, supposedly Gilead will cover the treatment for me if I am denied a third time!

Thanks for posting it gives me hope!

I personally never want to go to that doctors office again! Roger is right about how some docs just right a prescription.

ourfitter01 - Yes, the disappointments along the way, were very hard for me to except!

Don't give up hope or quit advocating for your health. If it wasn't for this forum & all the wonderful people sharing their stories... I may have given up!

I can't remember if I mentioned the last hurdle or not - But my doctor needed to send an RX to Support Path. Which was done - incomplete & unsigned! (Are you kidding me?!)

I had been keeping in touch w/ SP, so when I found that out... calls were made, of course.

Like you said - "I personally never want to go to that doctors office again!". I feel the same way, but will continue to see him for bloodwork, etc.

Going through this mess, taught me - First of all, God is in control & His timing is perfect! Second, our experiences will help others!

Looking forward to hearing... "outfitter01 is starting treatment!"

Blessings,
MG

morning_glory · « **Reply #59 on:** May 22, 2015, 07:48:22 am »

Quote from: sapphire101 on May 22, 2015, 12:19:57 am

MG you got your treatment! Congratulations - I have not been back to this post for a while and I am very glad that you were able to get through all the hoops. I will be sure and check in on you on your other posting in the "on treatment" group.

You are starting on Armed Forces day....what day is your end of treatment?

sapphire101 - I thought that was so cool to be able to start on a special day, such as that!
I believe July 10th will be my last day

outfitter01 · « **Reply #60 on:** May 22, 2015, 12:01:39 pm »

Quote from: morning_glory on May 22, 2015, 07:43:12 am

ourfitter01 - Yes, the disappointments along the way, were very hard for me to except!

Don't give up hope or quit advocating for your health. If it wasn't for this forum & all the wonderful people sharing their stories... I may have given up!

I can't remember if I mentioned the last hurdle or not - But my doctor needed to send an RX to Support Path. Which was done - incomplete & unsigned! (Are you kidding me?!)
I had been keeping in touch w/ SP, so when I found that out... calls were made, of course.

Like you said - "I personally never want to go to that doctors office again!". I feel the same way, but will continue to see him for bloodwork, etc.

Going through this mess, taught me - First of all, God is in control & His timing is perfect! Second, our experiences will help others!

Looking forward to hearing... "outfitter01 is starting treatment!"

Blessings,
MG

HAHA I just read your post about the unsigned prescription. I followed the advice that I read yesterday and followed up with both my insurance and doctors office. Good news the call reminded the the doctors to send in the paperwork to the insurance. When I followed up with the insurance I found out that the box number 7 on the prior authorization form was not checked off, this box states that I am treatment naive which is part of the approval criteria. GRRRR! I cannot believe it but whatever mayber support path can help......with this, I am waiting for the insurance to assign an appeal analyst to get more information. We shall see......If not for your positive outcome I would have given up, in fact I had given up but support path called me about a week ago and fired me up!

morning_glory · « **Reply #61 on:** May 22, 2015, 06:16:37 pm »

outfitter01 -
Good for you, in following up with your doctor's office!
Keep on advocating for yourself & don't give up.

I'm glad this forum is making a difference, I know it certainly helped me, in so many ways!

Blessings,
MG

Tom1952 · « **Reply #62 on:** May 22, 2015, 08:43:21 pm »

Thank you for sharing your experiences. I'm 15 years with HepC-1A and no treatment to date but feel like the time has come. Brain Fog / Exhaustion making life difficult.
The cost and insurance battle are daunting but your experience and the information you have provided are encouraging and give me hope for some success. Best of luck with your course of treatment.

Else · « **Reply #63 on:** May 23, 2015, 02:51:39 pm »

Thank you everyone here for posting! It's a bummer to read the crazy paper-chases, but really, really inspiring to read the successes of everyone who have persevered.

morning_glory · « **Reply #64 on:** June 05, 2015, 08:57:50 am »

Quote from: morning_glory on May 22, 2015, 06:16:37 pm

outfitter01 -
Good for you, in following up with your doctor's office!
Keep on advocating for yourself & don't give up.

I'm glad this forum is making a difference, I know it certainly helped me, in so many ways!

Blessings,
MG

Any updates you would like to share?

morning_glory · « **Reply #65 on:** June 05, 2015, 09:08:14 am »

Tom1952, Else & all others -
You're welcome!

Any updates on your situations?

Else · « **Reply #66 on:** June 05, 2015, 12:28:30 pm »

Thanks for asking, MG. Geez, I just lost a lengthy, half done post here by an errant lick of the mouse.

I'd reread the whole thread and really relate to your description of exhaustion and a very limited life due to decades-long HCV infection. It's especially frustrating when one has "good" labs, fibroscans, and ultrasounds. The type of results that make you want to cry in frustration because it feels like doctors are saying you're not really sick. Worse still, that they're creating a papertrail for the insurance company proving you're not really sick.

I was diagnosed in 1995. I know the difference between being asymptomatic and barely being able to function. On the 19th of last month my liver doc's nurse called to tell me she'd sent in the prescription but that the symptoms I was having that were the most troubling were likely unrelated to HCV and to talk to my GP about them. Huh. My GP had already told me to talk to the liver doc about them since they were fairly common symptom of long-term HCV infection.

Enter the rheumatologist saga. That'll have to wait for another post. I'm too tired. Short version - it's an extra-hepatic manifestation of HCV infection that is one of the eight bullet points on my insurance policy that would guarantee medical necessity of Harvoni treatment. It also would explain the symptoms I've been having. Labs should be in at the end of next week. It had me distracted enough to not follow up on that "sent prescription". When I finally did, it had been sent alright. According to the nurse, on the 19th. According to the specialty pharmacy, received on the 29th. 10 day difference? I should have followed up much, much sooner.

I have a fifteen year old son. Summer vacation starts next week for him and I can hardly put two feet in front of the other. My point is, this is effecting the whole family in a big way. The whole situation just sucks. And I'm angry at myself for not getting this convoluted circus of pursuing treatment started last year. I'd be done by now.

So I'm waiting for prior authorization. I was given a 6-8 wk estimate at my initial appointment with liver doc. But does that mean from the point of the first visit or the point from which the specialty pharmacy received the prescription? - a difference of 4 weeks. And waiting for possible supporting labs that might speed the process.

I am just waiting. Limboland. Well meaning suggestions make it worse. "Stay active! Take the dogs for a walk! Do some work in the garden!" I can't say it any plainer - I can barely get out of bed. The exhaustion has reached a completely debilitating level.

New York Girl · « **Reply #67 on:** June 14, 2015, 03:59:02 pm »

I'm new to this forum, and reading all these responses with shock but also with a sense of familiarity. I've had HepC most likely since the mid-70's, from a blood transfusion for ulcerative colitis. It was diagnosed in 2000, and at the time I had no liver damage. The hepatologist I saw then told me that there was no need to treat, and that it was likely that new treatments would be available before my situation got much worse. Fast forward to several months ago, when my primary care doctor suggested I now consider treatment, because of the new medications available. I saw a liver specialist (not the original one, though now I'm thinking I may try to go back to him) who agreed we should try treatment, and who did submit the original requests to my insurance company (United Healthcare, partnered with Express Scripts and Accredo). I was told they would only approve Viekera with ribavirin, not Harvoni. My situation is somewhat different, in that I underwent chemotherapy for colon cancer 8 years ago, and had many life-threatening side effects, necessitating ending the treatment before the full course. I was told I am a slow metabolizer, and that one reason I was so sick was that the drugs were not clearing my system as quickly as they should have. One of the main symptoms was severe anemia, necessitating multiple transfusions, and that is also one of the main side effects of ribavirin. I am seriously terrified of undergoing that again, especially when there is a drug out there that will cure my hepatitis without risking that side effect. Express Scripts will only approve Harvoni if I fail with the Viekera Pack. This seems ludicrous to me in my case, but I'm somewhat stuck at what to do next. There is only one final appeal left to me, and I want to use it wisely! I am fibrosis level 1, no cirrhosis, but with a viral load of 11 million+. I'm seriously considering not treating if I can't get Harvoni, but would appreciate any input this forum can provide me. Many thanks.

Else · « **Reply #68 on:** June 14, 2015, 04:33:56 pm »

Hi NYC,
Visit www.mysupportpath.com

Gilead Pharmaceuticals has a patient assistance program that will fund Harvoni treatment if you make under $100,000 a year. You will need to show two denial letters from your current insurance, 2 current paystubs, "proof of U.S. residency" (I was told a utility bill was sufficient) and complete the intake form.

If approved, they will send your doctor a prescription form for Harvoni to be filled by their Specialty Pharmacy (Covance). Covance will then FedEx you the medication. I was told the approval process for this will take anywhere from 2 weeks to 2 months.

I don't blame you re: Viekira Pak. Unnecessary risk.

New York Girl · « **Reply #69 on:** June 14, 2015, 09:41:52 pm »

Else, thanks so much. I'm planning to call the Gilead number tomorrow, but unfortunately my combined family income is over their minimum (that's both the good news and the bad!) so I'm not sure they can help. But I will try anyhow, since I'm determined not to risk ribavirin at this point….

morning_glory · « **Reply #70 on:** June 15, 2015, 07:40:43 am »

Quote from: New York Girl on June 14, 2015, 09:41:52 pm

Else, thanks so much. I'm planning to call the Gilead number tomorrow, but unfortunately my combined family income is over their minimum (that's both the good news and the bad!) so I'm not sure they can help. But I will try anyhow, since I'm determined not to risk ribavirin at this point….

NYG - When I applied for assistance, I also had to submit a monthly expense report. I let Support Path know we have three people living in our household. I'm not sure if they have some type of formula in figuring out who will get approved through them. Don't give up, do whatever it takes to get assistance.
On the expense report, I put everything down... I'm not kidding. I even included my church tithe, clothing (we have our growing teen aged granddaughter living with us), POA dues, gasoline, etc.

Blessings,
MG

Yes, I would agree with you on not taking the ribavirin.

morning_glory · « **Reply #71 on:** June 15, 2015, 08:05:57 am »

Quote from: Else on June 05, 2015, 12:28:30 pm

Thanks for asking, MG. Geez, I just lost a lengthy, half done post here by an errant lick of the mouse.

I'd reread the whole thread and really relate to your description of exhaustion and a very limited life due to decades-long HCV infection. It's especially frustrating when one has "good" labs, fibroscans, and ultrasounds. The type of results that make you want to cry in frustration because it feels like doctors are saying you're not really sick. Worse still, that they're creating a papertrail for the insurance company proving you're not really sick.

I was diagnosed in 1995. I know the difference between being asymptomatic and barely being able to function. On the 19th of last month my liver doc's nurse called to tell me she'd sent in the prescription but that the symptoms I was having that were the most troubling were likely unrelated to HCV and to talk to my GP about them. Huh. My GP had already told me to talk to the liver doc about them since they were fairly common symptom of long-term HCV infection.

Enter the rheumatologist saga. That'll have to wait for another post. I'm too tired. Short version - it's an extra-hepatic manifestation of HCV infection that is one of the eight bullet points on my insurance policy that would guarantee medical necessity of Harvoni treatment. It also would explain the symptoms I've been having. Labs should be in at the end of next week. It had me distracted enough to not follow up on that "sent prescription". When I finally did, it had been sent alright. According to the nurse, on the 19th. According to the specialty pharmacy, received on the 29th. 10 day difference? I should have followed up much, much sooner.

I have a fifteen year old son. Summer vacation starts next week for him and I can hardly put two feet in front of the other. My point is, this is effecting the whole family in a big way. The whole situation just sucks. And I'm angry at myself for not getting this convoluted circus of pursuing treatment started last year. I'd be done by now.

So I'm waiting for prior authorization. I was given a 6-8 wk estimate at my initial appointment with liver doc. But does that mean from the point of the first visit or the point from which the specialty pharmacy received the prescription? - a difference of 4 weeks. And waiting for possible supporting labs that might speed the process.

I am just waiting. Limboland. Well meaning suggestions make it worse. "Stay active! Take the dogs for a walk! Do some work in the garden!" I can't say it any plainer - I can barely get out of bed. The exhaustion has reached a completely debilitating level.

I'm sorry I haven't responded to your post, Life happens

The frustration is beyond words sometimes, and the suggestion of 'well meaning people' was so hard to take, at times. I know they mean well, but they aren't walking in the shoes of HCV, so they can't/don't understand. I really had a hard time with that one... because I really wanted to do all those suggestion! UGH!
And on top of all that - Advocating seems to be a full-time job! Plus taking care of ourselves/family/house, etc. It is exhausting, I cried a lot and had to fight depression, many times.

Aw, yes "Limboland", where the 'fun' never seems to end.... at least you have the company of others, I spent some time there, as well. I sure hope you can get a 'ticket' for the Harvoni path & get out of 'Limboland'

Blessings,
MG

I am now just past my 1/2 way point on Harvoni for 8-weeks.

New York Girl · « **Reply #72 on:** June 15, 2015, 08:18:09 am »

morningglory, I'm so glad you have finally gotten halfway there, and cheer you on for the other half!

Here's another question - has anyone else had the situation of extremely high viral loads (11 million+) but low LFT's and other markers? I've most likely had this in my system for almost 40 years….

Else · « **Reply #73 on:** June 16, 2015, 02:16:55 am »

No kidding, half way home and then some!!! More like 95% home having navigated the human pinball machine of actually getting the medication!!! Congrats to you, MG! I hope you'll be posting happy labs soon.

I walked in my insurance denial letter and appeal instructions to my liver doc's office today. They were supposed to have been faxed the denial by insurance company AND mailed their own copy. An on-line message to me from nurse said to let her know when I got a copy of the denial so she could address it. What? Read her a two page letter over the phone? Have her ask me to fax it to her?

No thank you. I won't fax anything to that office that I can't walk-in. Their fax machine has **ahem** issues. She was out today so receptionist said she'd put it on her desk.

So big Support Path question for you - I'd LOVE to get the ball rolling myself asap for the patient assistance program. I have the intake form printed out. Unfortunately, Section 4 must be filled out and signed by my healthcare provider. Just Section 4, which is dandy because I'd much rather fill the rest out myself. I would rather send it myself too because, well, it'll actually get sent.

I'm not sure how to do it! Isn't that crazy?!? Maybe just walk-in that page of the form and sit and wait for it? Ask if I can pick it up the next day? I really, really do not want to give the doctor's office the whole packet.

In all seriousness, I'd like them to be involved in the process as little as possible at this point. And the way things have been going, it seems that would suit them fine as well.

morning_glory · « **Reply #74 on:** June 16, 2015, 11:52:10 am »

Quote from: Else on June 16, 2015, 02:16:55 am

No kidding, half way home and then some!!! More like 95% home having navigated the human pinball machine of actually getting the medication!!! Congrats to you, MG! I hope you'll be posting happy labs soon.

I walked in my insurance denial letter and appeal instructions to my liver doc's office today. They were supposed to have been faxed the denial by insurance company AND mailed their own copy. An on-line message to me from nurse said to let her know when I got a copy of the denial so she could address it. What? Read her a two page letter over the phone? Have her ask me to fax it to her?

No thank you. I won't fax anything to that office that I can't walk-in. Their fax machine has **ahem** issues. She was out today so receptionist said she'd put it on her desk.

So big Support Path question for you - I'd LOVE to get the ball rolling myself asap for the patient assistance program. I have the intake form printed out. Unfortunately, Section 4 must be filled out and signed by my healthcare provider. Just Section 4, which is dandy because I'd much rather fill the rest out myself. I would rather send it myself too because, well, it'll actually get sent.

I'm not sure how to do it! Isn't that crazy?!? Maybe just walk-in that page of the form and sit and wait for it? Ask if I can pick it up the next day? I really, really do not want to give the doctor's office the whole packet.

In all seriousness, I'd like them to be involved in the process as little as possible at this point. And the way things have been going, it seems that would suit them fine as well.

This is what I did - I contacted Support Path & asked/told them I wanted to get the process started. (I knew I didn't have all the papers needed.) I explained as the papers became available, I would get them faxed right over. I was given a "reference number", which I wrote on each page, along with my name, before I faxed anything over. I included a coversheet, stating the number of pages & what they were. I then would call them that day to be sure the fax was received. They way they look for the faxes is by the date & time it was sent/received. Each time you call you will get a different person answering the call(s). They usually will ask you name, etc. I would then explain I have reference number & most of the time, I would get transferred to another person.

I didn't want to be 'forgotten', so I would call Support Path about every 7-10 days, or more often, if I had new information. They were very kind, patient, understanding & answered my many questions.

Keep copies of everything & make notes of the date/time, who you talked with, what they said, etc. It makes it so much easier to be able to recall details. (I have a folder, that ended up being almost an inch thick!)

Please if this didn't or doesn't make sense, OR if you have additional questions, let me know.

I will admit going through the process of getting Harvoni was so emotional taxing. Now looking back, I'm glad I persevered & God had my back on this.

"In all seriousness, I'd like them to be involved in the process as little as possible at this point. And the way things have been going, it seems that would suit them fine as well." I understand exactly what you mean by this & you are probably right. Sad, but true.

Don't give up, if you become overwhelmed or ready to loose it... take a 'time out' & re-group. I had to do this, sometimes for a few days. Then I would jump back on my Harvoni Horse.

Blessings,
MG

morning_glory · « **Reply #75 on:** June 16, 2015, 11:58:35 am »

Quote from: New York Girl on June 15, 2015, 08:18:09 am

morningglory, I'm so glad you have finally gotten halfway there, and cheer you on for the other half!

Here's another question - has anyone else had the situation of extremely high viral loads (11 million+) but low LFT's and other markers? I've most likely had this in my system for almost 40 years….

NYG - Thank you!
Maybe if you post this question, as a new post, you will get responses to your question. My VL wasn't as high as others, so I can't really answer your question.

Blessings,
MG

New York Girl · « **Reply #76 on:** June 16, 2015, 12:18:27 pm »

Thanks, good idea! Will do.

morning_glory · « **Reply #77 on:** June 18, 2015, 11:17:49 pm »

Woo-Hoo! I got my 4 week bloodwork results today!

HCV Not Detected!

AST - 15
ALT - 17

Awesome, awesome... better than I anticipated!

It feels very surreal to me, if that makes any sense?

Here is the back story to getting the results:
I was going to be at an eye doctor appointment, near my GI's office (40 mins from home). I called the GI office to ask if my results were back from my bloodwork, done last week. I wanted to pick up a copy while I was in the area. I was told he wasn't in today and had not signed off on it, so.. No, I couldn't have them.

Wow, are you kidding me?

The person I spoke with, was so very kind! She suggested my PCP could call her and request a copy to be faxed to his office. I knew my my PCP would not hesitate in doing this for me, which he did. Here's a funny part to this story, I picked-up the copy and realized - I couldn't read it, because my eyes were dilated!

Once I got back to my car, put my glasses on & read the results, I was so happy, I cried happy tears.

Praying for all of us to do well!

Blessings,
MG

To add to this wonderful day - We had a young black bear on our deck this evening, which was also awesome! He was just casually 'passing through'.

Else · « **Reply #78 on:** June 19, 2015, 04:27:39 pm »

Serious happy-dance for you, MG!!! Awesome!

I'm glad the bear stopped by to celebrate with you!

morning_glory · « **Reply #79 on:** June 22, 2015, 08:55:53 am »

Quote from: Else on June 19, 2015, 04:27:39 pm

Serious happy-dance for you, MG!!! Awesome!

I'm glad the bear stopped by to celebrate with you!

Else,
Thank you for dancing the 'happy-dance' with me!

I like the comment about the bear, celebrating w/ me (good one)!

Blessings,
MG

Debula · « **Reply #80 on:** June 22, 2015, 01:59:24 pm »

MG So very happy to see your results are that good!!
Very happy for you!!!!!!!
I will pick up my 8 week today hopefully (I think it was really 9 week)
Hoping I am still UND and ALT / AST have gone down some more

YAY and congrats on your UND!!!!

morning_glory · « **Reply #81 on:** June 23, 2015, 06:43:00 pm »

Quote from: Debula on June 22, 2015, 01:59:24 pm

MG So very happy to see your results are that good!!
Very happy for you!!!!!!!
I will pick up my 8 week today hopefully (I think it was really 9 week)
Hoping I am still UND and ALT / AST have gone down some more

YAY and congrats on your UND!!!!

Thank you so much Deb!

I see you are still Undetected! Awesome!

Praying for you & all of us to stay undetected forever!

Blessings,
MG

Redbird29 · « **Reply #82 on:** June 24, 2015, 05:12:13 pm »

I applied for the Support Path program in May 2015 and sent in my paperwork to the specialty pharmacy that I was working with on May 11. No response for almost 3 weeks and then they call because they had not gotten paperwork from my doctor to sent to Support Path. I contact him and he sent it in and papers were sent to Support Path on June 11, 2015. On June 19, 2015 I got call that I was approved and received my medication today on June 24. My doctor told me he had never seen anyone get approved as fast as I did so I am counting my blessings. Taking my first dose tomorrow and ready to walk this journey!!! Peace, light and healing to all!

Else · « **Reply #83 on:** June 24, 2015, 05:27:09 pm »

Quote from: Redbird29 on June 24, 2015, 05:12:13 pm

I applied for the Support Path program in May 2015 and sent in my paperwork to the specialty pharmacy that I was working with on May 11. No response for almost 3 weeks and then they call because they had not gotten paperwork from my doctor to sent to Support Path. I contact him and he sent it in and papers were sent to Support Path on June 11, 2015. On June 19, 2015 I got call that I was approved and received my medication today on June 24. My doctor told me he had never seen anyone get approved as fast as I did so I am counting my blessings. Taking my first dose tomorrow and ready to walk this journey!!! Peace, light and healing to all!

Confused about this. My understanding is that application is faxed directly to Gilead Support Path. My doc will be snail mailing me the page they need to fill out to include with my fax package. Waiting on one more denial letter. When approved, Support Path will send doc prescription form to fill out and send to Covance Specialty Pharmacy. Covance will then contact me re: fedex delivery.

Thought this was the only way? Walgreen Specialty Pharmacy was only in the picture when it was a possibility that my insurance would pay. Am I missing something here?

Redbird29 · « **Reply #84 on:** June 24, 2015, 07:35:44 pm »

Quote from: Else on June 24, 2015, 05:27:09 pm

Confused about this. My understanding is that application is faxed directly to Gilead Support Path. My doc will be snail mailing me the page they need to fill out to include with my fax package. Waiting on one more denial letter. When approved, Support Path will send doc prescription form to fill out and send to Covance Specialty Pharmacy. Covance will then contact me re: fedex delivery.

Thought this was the only way? Walgreen Specialty Pharmacy was only in the picture when it was a possibility that my insurance would pay. Am I missing something here?

Hello Else -
The doctor I am seeing had sent my paperwork originally to Quality Specialty Pharmacy. They applied to my health insurance who denied and then denied appeal. Quality then sent me the paperwork for Support Path, contacted my doctor for the paperwork needed from him and then forwarded the entire package to Support Path. (about 4 weeks)

A week later, Support Path called me to notify approval, next day Doctor called and said he was sending in RX (this past Monday 6/22), yesterday 6/24 Covance Specialty Pharmacy called me to verify shipping address and I received my Harvoni today.

I don't know if this is out of the norm and I should be thanking all the powers that be (which I am for getting approved) or if I am extremely lucky that all fell into place as quickly as it did.

I will hope and send good wishes to you that your application goes as smoothly as mine and that you get approved quickly.

Peace and blessings,
Robin

Else · « **Reply #85 on:** June 24, 2015, 07:51:52 pm »

Congratulations to you, Redbird! It sounds like Quality Specialty Pharmacy went above and beyond to get you your medication. Not sure why since they were losing business to another pharmacy, but good for them. It sounds like I'm on the same trajectory, just doing the faxing myself. Which I'd prefer.

Keep us posted on your recovery! Are you doing 8 weeks or 12 weeks?

Redbird29 · « **Reply #86 on:** June 25, 2015, 12:42:39 pm »

I will be doing 8 weeks. The doctor says that is what is recommended as I do not have cirrhosis, low vl and treatment naive. A suggestion that I would make to you too is that when I sent in my application to Support Path I wrote them a letter about how HCV has affected my life. I was not a "required" part of my application however I did it anyway. Not totally sure if it helped get it through faster however I can't see that it hurt either.

Best wishes to you and I look forward to the day you get yours too!
Robin

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