Poll of Treatment Coverage or Denial

[Onefluover]

This poll will help us get a snapshot of where we stand as far as how many of us are being covered and how many are not. I have, for instance, read that for Medicaid, 3 out of 4 people are covered initially and then 80% of the remainder are covered after appeal. That would mean only about 5% of total treatment-sought cases are outright denied through Medicaid. I'm trying to see how accurate or true that is here (one) and (two), how many people that 5% totals accross all the estimated infected there are in this country.

[Onefluover]

I, of course, was denied.

[beto]

Well I voted treatment approved... which I was...but that was after three and a half denials.  I was denied even with cirrhosis.

[BG]

While my treatment was approved by Medicare and the supplemental policy, it still only covered about 60-70%--which is a high percentage, but at what it cost for 180 days of treatment it would have been out of reach for me if not for the Patient Access Network pitching in for me.

[cazbyrd]

Yes BG..I'm with you 100%...Had it not been for PAN I would not have been able to have treatment which I began Solvadi/Ribavirin on July 2, 2015...I will receive my last 4 weeks of pills on Tuesday 11/17/15...and my EOT will be 12/17/15...Been undetected since 4 weeks...Yay...Ribavirin has kicked my butt but so so worth it to put this 40 yr old dragon behind me...now I'm looking forward to my Golden years a little bit clearer... ....cannot wait till next year when I'm told I'm cured...Best wishes to all of those in this same fight...Thank You

[Rosie13]

Treatment denied 2 times.started reaching out to Gilliad,Patient Access Network, & Patient Advocate Foundation.Once approved for help the insurance changed their mind & covered me for 8 wks not the 12 wks that Mayo Clinic prescribed.After 8 wks the stalling returned .2 denials,peer review denial & Gilliad denial.Praying that future patients don't have this pathetic response to a fully covered insurance customer.

[Scoutdoy]

I was approved on first request....thankfully



Scout

[BG]

The one thing I have learned is that HCV is conflict. It seems criminal to me that people need to suffer with declining health and the mental anguish of uncertainty for years when such effective treatments exist. It makes me angry when I hear politicians and reporters discuss health care and insurance, and say things like, "Nobody in this country is denied access to healthcare." They don't have a clue about reality. Or true equality.

Meanwhile, the obstacles--the waiting, the stigma that so many health care workers want to hang on us, the staggering cost--seem to forge an inner strength that carries us forward to battle the dark and find a renewed joy in living while this timer goes tick-tick inside your head. I look forward to a day when nobody will be denied the opportunity of treatment. The sooner the better.

[Rosie13]

BG,so well said...my feelings exactly.It seems uneven all the way around.If we needed a heart test there are no questions asked or a knee replacement.Just hoping it gets better for others as we press on with our countdown to cures!

[Scoutdoy]

Rosie, what gets me about the whole insurance issues in our country is how uneven it is, there is no consistency. For Instance a friend of mine and myself both got approved on the first shot and we are both F-0..great liver numbers. My best friend is f-3 and has been denied twice already, still not approved. Same city, same state, yet she "needs" it more than us. It's not big high paying jobs that seem to have the better insurance either. One person works at a restaurant and the other at a Home Depot..that got the approvals, the denial works at a law office. Go figure. I can't understand it


Scout

[Lynn K]

Well I voted treatment approved... which I was...but that was after three and a half denials.  I was denied even with cirrhosis.

I am with Beto on this I was also initially denied even with cirrhosis.

I found a side door by making a comment to an article on my PBM web page. They contacted me and after I sent a long politely worded very angry e mail plus a phone conversation I had the meds 2 days later

I work for a major manufacturer with a presence in many states as well as overseas with about 150,000 employees worldwide but still denied initially with cirrhosis.

[Scoutdoy]

Lynn that is what I mean....it is completely irrelevant who you work for or what state you live in....it's a crap shoot. I don't know ....maybe some of it is how each doctor asks for it. It's frustrating for sure for anyone who has been denied, who sees others get it right away. Hopefully soon if you have hep...you will get the meds with undo stress of filing appeals


Scout

[Lynn K]

AMEN to that Scout

[beto]

All,

It is interesting to note that in both my case as well as Lynn's, a letter was written.  Oh the power of the written word, when sent to the right places.  I highly recommend it to anyone having trouble.  Make sure you are clear whom you copy.  If you send it to your carrier, make note of the fact the you also copied Gilead and various compliance institutions and so forth.  No One wants the "bad guy" PR.I first sent my letter to the hepC dept at Walgreens and the case agent passed it around the office bringing emotion to the subject.  The comment by everyone was that the letter humanised me.  All of a sudden I was not just a patient of such and such doctor; and an insured with an identifying number, I was a father, a husband an uncle, a community member, a breather of oxygen etc, etc, etc.

I had sent the letter to my doctor's office for the hell of it and they sent it to my insurance company and several other places.  I was right in the middle of my forth denial.  Then out of nowhere, Walgreens called me a told me I was about to be accepted...they also mentioned the they had been pushed out by my insurance company in favor of their own specialty pharmacy branch (keep the money in house)

Needless to say I was thrilled, however cynical.  Write a letter that tells a personal story of what you have gone through.  Remember, the average joe has no clue about what our journey through hep land entails.

[BG]

Great info Beto,

I was denied treatment several years after a non response and left it up to the doctor's staff to deal with. I assumed they were the experts, so I never considered writing my own letters. Who is a better advocate for the patient than the patient himself.

All for the good in my case because waiting a bit more until Harvoni was approved yielded a positive outcome for me. But now with the success rate of the new meds, waiting should not be necessary.

[dragonslayer]

A lot of Medicare is administered by private insurers as Medicare Advantage plans, which must adhere to basic Medicare precepts, but are allowed to augment original Medicare, and are generally responsible for approval/denial.   

Would you vote on these Medicare Advantage plans as 'Medicare/Medicaid', or as 'Private Insurance'?

[MaryC]

All,

It is interesting to note that in both my case as well as Lynn's, a letter was written.  Oh the power of the written word, when sent to the right places.  I highly recommend it to anyone having trouble.  Make sure you are clear whom you copy.  If you send it to your carrier, make note of the fact the you also copied Gilead and various compliance institutions and so forth.  No One wants the "bad guy" PR.I first sent my letter to the hepC dept at Walgreens and the case agent passed it around the office bringing emotion to the subject.  The comment by everyone was that the letter humanised me.  All of a sudden I was not just a patient of such and such doctor; and an insured with an identifying number, I was a father, a husband an uncle, a community member, a breather of oxygen etc, etc, etc.

I had sent the letter to my doctor's office for the hell of it and they sent it to my insurance company and several other places.  I was right in the middle of my forth denial.  Then out of nowhere, Walgreens called me a told me I was about to be accepted...they also mentioned the they had been pushed out by my insurance company in favor of their own specialty pharmacy branch (keep the money in house)

Needless to say I was thrilled, however cynical.  Write a letter that tells a personal story of what you have gone through.  Remember, the average joe has no clue about what our journey through hep land entails.

I,too, was initially denied tx which was overturned on appeal. I essentially initiated the appeals process by writing a very detailed letter on my behalf. Prior to composing the letter on did research on my insurance company's medical policy in the treatment of GT 3. I made sure I touched base on each of the criteria for tx with non interferon medication. I then asked my PCP and Hepatologist to provide the supporting clinical.  I was lucky in that this did work for me, and my denial was overturned.

I believe that in the case of Medicare Advantage plans, they must abide by CMS regulations, but also the specific insurance medical policy does apply if not in conflict with CMS regs.

Mary

[chem_chic]

I recently was denied. This was stated to me by my Doctor. He was very vague on the details. He just stated that the private pharmacy they used checked with my insurance company and the treatment was denied. It does not seem that he tried very hard. Too much trouble I guess or maybe too busy to care. I am looking into other avenues myself.

[Lynn K]

Call your insurance company be proactive.

They are required to send you a letter stating the reason for denial. You have the right to appeal.

If your doctor wont try for you then you must advocate for yourself.

Here is a link from a post by else she was able to appeal and get covered

http://forums.hepmag.com/index.php?topic=3457.msg33444#msg33444

[chem_chic]

Call your insurance company be proactive.

They are required to send you a letter stating the reason for denial. You have the right to appeal.

If your doctor wont try for you then you must advocate for yourself.

Here is a link from a post by else she was able to appeal and get covered

http://forums.hepmag.com/index.php?topic=3457.msg33444#msg33444

Thank you will do this this week. 

[Scoutdoy]

Hi Chem....just a little info I received from my doctor. He said many doctors do not submit the proper paperwork with the request. They need to submit EVERY symptom you have ever had, how having this disease is interrupting your quality of life...every headache, joint pain...etc. I think a lot of doctors honestly don't know how important the actual request for the prescription is. He also said that a lot of insurance companies have an initial robo denial. Not even a person who denies it, so sending an appeal gets the attention of a human being. Keep up with it, you will get approval. If your doc doesn't want to spend the time to do it correctly, switch doctors. Good luck


Scout

[chem_chic]

Thank you Scout      I will be doing whatever I can. I really do not think there was much effort to get the meds for me.