Where are you from? I'm currently taking URSO (started in early January) and while it's making my numbers better...300s down from 900s it's still not where doctor wants it. He has me taking it 3 more months to see if it keeps dropping. If not he says we'll start Ocaliva at that point. He said sometimes it's hard to get insurance companies to cover it because its like $10,000 a month. While he may or may not be exaggerating I get the feeling its very expensive. I live in the US...Texas to be more specific. I'm wondering what it costs in other countries.
I just hope URSO works for me.
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marty102
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I am in the UK and the year I started itching - 2010 - and diagnosed (December that year) with PBC my LFTs were higher than normal but under 600. After starting the urso they did drop, my ALP to 278 and the ALT just under double normal range. This was 2 months (Feb 2011) on urso. My next checks a few months later showed these 2 to rise very slightly. June 2013 they were better than the original start on the urso but have since bounced up and down a bit but just having a glance as can access my results via my surgery online these days, the ALP is still under 300 just. I've always said to be OK with PBC from these results and as yet I've no other known symptoms except I still have the itch but it's not 24hrs a day like early days but confined to late at night (11p.m) and vanishes by 6a.m.
Being in England and under the NHS I as a patient only pay prescription charges (only take one medication, the urso) and when I go to dentist, treatment and same at opticians, etc. (Here in England if you are on any form of benefits you usually do not pay for prescriptions or certain basic dental treatments.
Like the US though anyone can take out their own health insurance and some employees (like my brother-in-law) have automatic cover (like BUPA that is one healthcare organisation) so they can take up private doctors and get seen far quicker than under the NHS usually (unless you are an emergency case of course). Though I have never taken out any form of private health insurance here, I think reading the information now, doubtful as I expect majority you have not to have a pre-existing condtion on applying.
I am in the UK. The URSO for me has brought my numbers down into the 100s but I have been on URSO since 2006. I see you are in Texas and I wonder if you are also in touch with PBCers.org who are based in Texas. I believe that they may have more information about help with costs in the USA. I understand that at the moment Ocaliva is very expensive. In England and Wales Ocaliva has only just been approved by our drug controlling body NICE. Due to the set up of the NHS we do not pay through insurance (unless privately taken out) however we have a system where we pay weekly or monthly to the Government our contributions. We also pay for our prescriptions unless exempted due to retirement age or ill health.
I found this link which talks about the cost in the USA:
Hi, I'm a pharmacy technician in Virginia and I can answer this one for you.
On the back of your insurance card there is a member services number...call it! Tell them the name of the medication and they will tell you what your do-pay will be. A lot of people think that the pharmacy is the one who sets the price of your prescriptions....NOT SO... it's your insurance company...we just collect the co-pay and bill your insurance company for the balance owed on the medication you picked up.
ASK your doctor for a "coupon or discount card" from the sales rep for the medication....if they have one it helps a lot! Also, call the company that makes the medication...a lot of times they will help cover costs....
I am starting Octavia today. It took my doctor 3 months of appeals to get it. Then they wanted a $100.00 copay. So my doctor intervened again and I am finally getting it...no copay.
You have to be your own medical advocate or you slip through the cracks. I live in PA by the way.
Also ... the request for it was sent and accepted immediately by MY insurance company so you may or may not have any trouble being accepted for it. I'd go ahead and have the doctor put in a request for it and have the leg work out of the way
I had to call my insurance company for other health information so while I was on the phone with them I asked if Ocaliva was covered on my insurance. She told me yes...but it had to be preauthorized and done through mail order. It's considered a 'level 3' med which means I pay 30% of the cost with a minimum of $125 up to a max of $375. Since I know this medication is crazy expensive my part would be $375. I sure hope URSO works because there is no way I can afford Ocaliva.
Ask your doctor about Fibrates. You can do a search this forum for "Fenofibrate" or "Bezafibrate" to read other`s experience and opinion on Fibrates. They should be much cheaper and can be benefit for some PBC patients. They are not off-the-shelf standard therapy for PBC. I think bezafibrate is not available in US.
My GI is connected to a company who supplies Ocalvia to patients who have no insurance or whose insurance does not cover it. You have to be approved. Most patients get it st no charge.
I take only Ocaliva. I live in TX also. My GI works with Interconnect to assist patients in getting it. I checked through Good RX & lowest price was $6,257 at Walmart. I get mine at no charge. Interconnect works directly with Intercept Pharmaceuticals to help those who have no insurance or their insurance won’t cover it. Check it out😊
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PBC and newly started Ocaliva
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