Ocaliva financial assistance: Had blood work... - PBC Foundation

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Ocaliva financial assistance


Had blood work yesterday and my ALP continues to be over 500 (original diagnosis 2 years ago). At my Nov. Dr's appointment I was told if ALP didn't improve Dr. would add another med, probably Ocaliva. Can anyone please share their experience getting financial assistance (United States) to pay for this medication. I am on medicare but even with private insurance the cost would be about $20,000 per year. Did your Dr.'s office help you get assistance or did you need to do this by yourself? Thanks in advance.

11 Replies

Hi there

They are starting a clinical trial soon I think in the us. It's called seladelpar. I have been on it a year now and showing very positive results. May be worth mentioning to doctor.

kp1234...hello. I take Ocaliva and yes I have assistance. My dr contacted them and I’m pretty sure your dr will have to do the same. I was allergic to Urso & he had to submit a form stating that it was necessary I take ocaliva. It is through Interconnect Support. Hope that helps 😊

In the UK. I was on Ocaliva for a year and made no difference at all to my APL levels so I was taken off it. It may work for some but not a miracle cure for all.


I'm in the US. Have been on Ocaliva for 2 weeks as an addition to Urso. Bought through CVS Specialty Pharmacy in PA. They took care of my private ins approval and assistance so I didn't have to contact my Dr. I could never afford The outrageous cost otherwise. The pharmacy has been extremely helpful. A nurse calls periodically to see how I'm doing and offer hints on how to manage. I itch occasionally and doesn't seem to be any different since starting Ocaliva. Acidic foods seem to trigger itching. It will be a few months before I'm tested again.

The answers so far to your question are not considering the fact that you are on Medicare and no doubt have a 'Part D' prescription drug plan.

If your doctor does the required request and Interconnect (the pharma company) approves and works with your insurance, the most you can get is assistance with the copay. So let's say this happens and you qualify for a $0 copay situation. You still have to keep the so-called Part D 'donut hole' [the coverage gap] in mind. Every time you get the prescription filled, the total cost of the drug is counted toward putting you into the donut hole, even tho you have a $0 copay; and being in the donut changes your copay/coinsurance out of pocket expense for ALL your prescriptions. So what, you might say?

Well, having just gone through this process with my wife's doctor, her Part D Plan and CVS Specialty, I have actual numbers which I hope will clarify the issue from a Medicare perspective.

My wife's plan classifies Ocaliva as a Tier 5 Specialty drug; her plan is Express Scripts Medicare Saver, which currently offers the best comparative price support for Ocaliva among all the plans. So the following numbers are a best case scenario at the moment (your cost will vary somewhat per your particular plan's deductible, if any, and Tier classification of your prescriptions; but what I'm giving here is going to be in the ballpark):

Retail cost for a 30 day, 5mg tablet supply of Ocaliva is $6522. Even if you assume a $0 copay situation, this number IMMEDIATELY moves the donut hole meter over the $3820 "total drug cost for the year" threshold that applies to all Part D plans, thus putting you in the donut hole. And THAT dramatically increases your out-of-pocket for ALL your other drugs. In my wife's case, for example, her Ursodiol would move from a $12 copay to $340 copay for a 90 day supply; and she is taking other drugs which would be similarly affected. In our case, the situation is even worse, because we didn't initially qualify for $0 copay (we have around a $30k per year income). So for us, the assisted copay for the first 30 days of Ocaliva would come to $1930; $1396 per 30 days supply while in the donut hole; and $322 per 30 days supply in the final 'catastrophic coverage' phase, which you enter after you are $5100 out of pocket for the year. And that's just Ocaliva; as I said, all other prescription costs increase once you enter the donut hole. In our case, the result under Medicare would be an estimated $9K minimum in out of pocket expense for this year (assuming she started on Ocaliva in June).

And that's just the start of it. You have to also consider: how long will your Ocaliva assistance last? What happens in November, if you decide you need to change to a different Part D plan? If you stay with your current plan or change, what happens if your prescriptions change to different Tier classifications? How will such changes impact the deal you have for the $0 copay?

You have to research all of this and more, and most importantly, you have to know how to assess prescription drug costs per your particular Part D plan, considering the donut hole issue that impacts ALL Part D plans. In our experience, the doctors and their staffs typically don't have a clue as to how the Medicare system actually works in terms of cost. (I don't mean that as a criticism; after all, I want my wife's doctor to be a liver expert, not a government bureaucrat.)

All this said - I would urge you to start by frankly stating to your doctor that you cannot afford this drug (if that's the case). Any assistance you get from there has to begin with the doctor then making calls and/or writing the justification that puts the wheels of assistance in motion. But be warned - to the best of my knowledge, the best you can do is qualify for a $0 copay situation; a situation that does NOT exempt you from the donut-hole impact on your finances. There MAY be some sort of poverty line exception where the system agrees to give you the drug outright, but if there is such an exception, I have no knowledge of it.

I hope I haven't overwhelmed (or discouraged) you with all of this, but the Medicare system is what it is, and believe me, there is nothing but disaster lurking where the decision making of all those involved in you healthcare is based on assumptions vs knowledge of that system.

Thanks for the replies. My Dr. is affiliated with the Regional Medical Center /Medical College for the state I live in. I'll hope that there are some insurance experts on staff. I'm 68 and still substitute teach (almost full-time). I hope I don't have to quit -- but I also don't want 1/2 (or more) of my pay to go toward medications.

gwillistexas in reply to kp1234

Please ask your dr himself, to contact Interconnect. I reference to the above post, I do not live in poverty. I make a nice income but simply could not afford Ocaliva. Interconnect takes into consideration that you have necessary expenses such as mortgage, cars, etc. you would be asked to fill out a form which asks for your household income & how many people live in your home. They assist those who have no insurance and those whose insurance doesn’t cover much of the drug. I pay nothing. I will start Medicare in July & I did not take Part D. I’ve been advised against it from others. I am checking into SilverScripts drug plan. Best of luck to you 😊🙏🏻

joe4san in reply to gwillistexas

To clarify - Part D plans are the only option for people who choose "original Medicare" (vs. a Medicare Advantage plan) as their insurer. That is our situation and so my advice springs from that fact.

Perhaps the drug plans available to Medicare Advantage customers are better; I don't know. But, FWIW, we chose original Medicare because it was the only way to get Medigap supplemental plans that cover the total 20% of expenses (after Medicare approves the care and pays for the initial 80%). Given our health issues (PBC and breast cancer), we have never regretted that decision. Cancer care alone ran in excess of $100K, and ongoing PBC care is costly.

gwillistexas in reply to joe4san

I have regular Medicare A & B. I have Cigna Plan F which picks up immediately what Medicare doesn’t pay.

gwillistexas in reply to joe4san

But of course that’s not drug coverage. I understand that.

The Assistance Fund covers my Urso. Perhaps it would cover Ocaliva too. Contact tafcares.org.

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