Get Part D in Oct. or stick with no insurance for prescriptions?

[diamondd]

I'm 1b. Went through interferon/ribavarin combo for 6 mos. (null responder) and then, after 6 mos., another 48 weeks in '02-'04. Had a couple of whopper strokes in '09. So, I'm on disability, do have Medicare Part A & B. At the time I first went on SSDI, I did not opt for Part D, as the cost-benefit analysis didn't make any sense. (I use a discount drug card for my other meds) Last April, the dr. wanted me to go on the Sovaldi, Rib, Interferon treatment immediately. My AST is slightly elevated (33). My RBC (5.15), hemoglobin (15. and hematocrit (47.2) are all slightly elevated. I have diminutive esophageal varices and portal hypertensive gastropathy. My viral load was at 11,000,000 in April. An abdominal MRI showed mild changes of chronic liver disease without advanced changes of portal hypertension. However, without a scan, the dr. still classifies me as stage 4, cirrhotic. I had such a nasty time with the interferon/rib. I finally got the dr. to give accurate stats on SVR for someone with my specifics (I'm 63, previous null responder, etc.) which were 70% SVR, 30% relapse rate. So, I opted to wait until the fall or beginning of the year for the sovaldi/ledipasvir combo pill. I have no tangible assets, as the past medical go-rounds wiped me out...no house, no car, nothing. I make a tad too much on SSDI to qualify for Medicaid or other assistance. My question is: Do I sign up for a Part D plan (where I would have to pay a penalty with each premium for not signing up when first enrolled and would, in some instances, increase the costs of my other meds) during open enrollment in Oct.? Or, do I count on the various prescription assistance programs when he writes the scrip for the new wonder drug? I'm so confused.

[Mike]

Hi Diamondd,

This a tough but great question. I would run 2 tracks.

Number 1: Contact the Part D insurer and check their formularies (what drugs are covered). You can talk to the pharmacy that  handles the provider's prescription service and ask if the drugs are/will be  covered.

There are numerous Part-D insurers, such as Humana, WellCare Health Plans,  WellPoint and so on. Each company may have different formularies, so a "no" from one doesn't necessarily exclude another.

Number 2: Contact the patient assistance programs and tell them your situation. I'm sure they will have experienced this scenario and can give you advice.

Since Sovaldi is the main component of this treatment, I would contact Gilead and speak directly to a customer service rep. He or she may be able to give you guidance and direction.

You have until the end of October to do your research and determine the best option, should you choose to go with Part-D.

Given to the cost of these new drugs, however, and insurers reluctance to cover them, you should apply for patient assistance now, so you can beat the influx of new patients doing the same thing in October.

Best wishes, Mike

[diamondd]

Thanks for the reply, Mike. I really do appreciate it.
Since I'm banking on the new med, which the FDA hasn't even approved yet, do you think Gilead would put me in the pipeline?
And, since this med won't be on any of the Part D formularies, would they still give me any info?
I guess Gilead is the place to start.
I keep looking for clinical trials, as I have friends in a variety of locations, but there just doesn't seem to be any that I fit. I wish my dr. had told me two years ago that I had to be proactive about the trials...I thought he would be looking for ones that fit. Oh well.
Thanks again.

[diamondd]

FYI: Gilead says that you can't start the process until the new drug has been approved and a prescription written. She also indicated that I would have to sign up for a Part D provider prior to them considering the application for support.
Since providers won't add to their formularies until Jan. '15, the process seems exceedingly frustrating...and expensive. I'm not sure where I can cut my budget for the additional premium charge, but I guess I'll have to figure something out.

[Mike]

Hi diamondd,

Is there a particular reason why you're waiting for the one pill protocol? It is simply  two meds put in one pill.

Sovaldi and Olysis (S/O) is available now, and it is well tolerated and effective (no INTF or RIBV).

Alswo, I completed a course of SOL+INTF+RIBV in April, and have achieved an SVR12 (cured). It wasn't much fun, but a lot better then the 48 weeks I did in 2001.

The reason I ask is you can get a script for either now, and 'shop' it around. This will allow to to see how the insurers  react and help identify your options.

You've already done a little research, and it seems that you'll have to get Part-D coverage if eligible. One option is to get the Part-D coverage during treatment and drop it once you're done.

The point is: It'll take a little effort on your behalf; but you should be able to find a clear path that will work for you.

Let us know what you find out, as there are many folks experiencing the same barriers, and together we can all learn how to knock these barriers down.

Best wishes, Mike

[diamondd]

After doing a total of 72 weeks over a two-year time span in '02-'04, being a null responder for each, and having it be one of the worst experiences in my life, I was extremely hesitant about going through that route again, even with Sovaldi. Additionally, there was the 70% SVR and the 30% relapse rate, which my dr. had finally told me.
I asked about the off-label combo, and my dr. wasn't willing to do it. They said they were only prescribing it for one person at that time, and it was someone who was pre-transplant and in very dire circumstances health-wise.
I've researched the chances of SVR for someone in my specific situation, and the one-pill combo seemed to have the best odds (over 90%). I realize the data is from a small pool of patients, and I still can't get a good relapse stat, but all in all, the odds seemed best with it.
His biggest concern was my liver becoming decompensated sort of spontaneously, which he said occurs in 8-9% of patients.
So, playing the odds and looking at my numbers, it seemed worthwhile to wait another few months.
I've had the dragon for 40 years, and I'm so looking forward to eradicating it. Some days, the symptoms are overwhelming.

[rainbowray]

Hi Diamond,
I'm kinda in the same boat as you, Gen 1B. My doctor did not want to try Olysio either. The off label was his reason, but I suspect other.
I hesitated but went for sovaldi/ribavirin combo. I am now undetected since 3 weeks which makes for a great chance of SVR. The difference in treatment is the solvaldi, it is the changing force. The side effects are not bad, I have not missed a day at work for 6 weeks. The treatment is for 24 weeks for 1B. Since you are stage 4 you are very advanced. I was stage 3 bridging so I got treatment to put the virus asleep for several months. My liver is resting and healing, as pain is subsided substantially.
If by chance the virus returns next year, I will then do the new drugs.
I believe you should not wait, If you decide to go solvadi/riba and your doctor refuses, get another doctor. Waiting just allows for permanent damage that no treatment will rid. Your insurance cannot refuse sol/riba, you are interferon intolerant. My opinion is to not wait, I seen too many in your stage go down quick.
I'm not trying to put a scare on you, but this virus does not play games when advanced, and it will escalate quickly if it wants to.
Hoping the best for you.

[diamondd]

Howdy Rainbow:
First off, thanks for your response.
One thing that has always puzzled me is that my doctor made the stage 4, cirrhotic diagnosis strictly from an endoscopy that he did which showed diminutive esophageal varices (stage 1). I have not had any fibroscans. My last biopsy was in 2000, which showed minor fibrosis. My labs have been good, except for the last viral load (11,000,000).
Anyhow, after reviewing the SVR stats for my specific condition (63, null responder, etc.) and discussing the big picture with a nurse practitioner in his office, I decided to wait. SVR seems to decrease (from 70%) without the interferon, and the relapse rate is pretty high.
One of the factors in my decision was not have any prescription drug coverage and no tangible assets. Zip, zero, none.
So, I want it gone and gone for good. Since it was only going to be a couple of months until the new combo pill was on the market, and it had better SVR rates, that's the route I chose.
Yeah, I don't care for this doctor, although his reputation is great. We just don't communicate well. I mean, he leaned over me as I was in the recovery room, coming off the endoscopy drugs, and said, "You have cirrhosis, stage 4," and walked away. I called him back several times to get some clarity on that one.
My labs have been good over the past few years, other than polycythemia, aka thick blood. I think there's a definite correlative, if not causal link to the strokes I had and chronic hep C.
If a clinical trial came up somewhere in the country that looked good, like the AbbieV stuff, I might jump on it. I just haven't researched their new drugs thoroughly.

[rainbowray]

Diamond,
Does your insurance cover the fiboscan, or fibrosure blood test? If so be assertive and get one. They are just as conclusive as a biopsy and not invasive. That way you are more sure of your condition which plays to your decision. If my insurance did not cover the fibroscan, then I would have to pay $200.00, which is worth it to me.
I was fortunate to get both, and both were in agreement to my liver's condition.
sovaldi/ledipasvir is definitely a better treatment and if I could get it, I would too but I'm taking a preemptive approach, weaking the opponent before it gets too strong.
I refused all interferon treatments, 6 times by 6 different doctors. All said they cannot be my Dr. Ok with me, but I felt now is not anymore time to wait.
Praying you make the correct decision.