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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Vancomycin Insurance Coverage

According to Wikipedia, Vancomycin was first sold in 1954 (obviously, I haven’t thoroughly researched vanco at this time). Why does this medication cost a small fortune when it has been around so long? I am so thankful that my son’s insurance covers the cost at this time, but I have this worry in the pit of my stomach that they could decline to cover in the future because the medication isn’t “clinically indicated” or doesn’t following an established treatment protocol. I picked up a 25 day supply of vanco and it cost me $4 with insurance (of course, my son’s deductible was met within the first month of this year). The pharmacist informed me that w/out insurance the medication would’ve cost $9967 for a 25 day supply. Can we write to a congresswoman or the manufacturer, Ani, to obtain lower cost for PSC patients? Certainly, Ani could use it as a charitable expense? My son went from stage 2/3 liver disease to no stageable liver disease within 5 mths of vancomycin medication therapy. What can be done to make this medication more accessible for those who can’t afford it? Definitely, more research trials will help to make the medication mainstream or at least out from beneath the shadows. Research trials are not abundant in the first place when your dealing with a rare disease! Curious, if anyone has ideas?

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I think the high price of pill form vancomycin is due, at least in part, to lack of demand. This is really only prescribed on label for C. diff GI infections and many hospitals prescribe a PO cocktail from IV vanco for their admitted patients due to cost of the pills. Low demand and short term / infrequent use is probably why there hasn’t been a lot of price negotiation.

IV vanco compounded for oral use is a lot more reasonable in price. The problem is that insurance companies are often a pain in the butt regarding anything that is considered a compound. Typically compounds are much more expensive than the alternative and this is the one exception where cost is reversed.

I think having a backup plan is a good idea. I previously used a vanco compound and will go back to paying $200 full price for the compound if my insurance starts to balk.

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Thank you so much for your response. I will purchase compounded Vanco if my insurance decides that they are no longer required to pay for an off-label medication. What/ if can be done to decrease the price of the capsule form? Would it be futile to draft a petition and obtain signatures in a plea to the manufacturer to provide the medication at a reduced price to PSC patients?

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One problem is that PSC is not on the label of vancomycin. Drug makers are prohibited from promoting off-label use of their drugs. I’m speculating that a discount to an off-label population is a risk a drug company is unlikely to take.

I guess the goal would be for the FDA to approve oral vanco for PSC. That way insurances can’t deny to pay. But this means FDA trials. I know some are being done, but it’s not fast enough for me…my daughter loses her insurance next year when she graduates college. Then we will be searching for insurance that will pay.

Joki,

How old is your daughter? If I remember correctly the insurance companies are required to provide IBD coverage until age 26. Will she make too much money to apply for Medicaid? Does Medicaid even cover vanco?

I have thought about getting the medication off the black market if I was desperate enough. Of course, I would have no idea how to do this. Not to mention there is no way to ensure the quality of the product or if it is even vanco for that matter. Someone suggested that I travel to a foriegn county and purchase the largest quanity possible. Another friend mentioned that he knows a foreign doctor that may be able to get vanco.

It is horrible that we have to have these difficult conversations. I am sure you read JTB’s suggestions about compounded vanco. Liquid vanco is supposed to be cheaper than tablet form. Of course, the problem is that not all vanco is created equally as far as oral bioavailability.

If my insurance refuses to cover vanco, I will most certainly write a letter to Ani begging them to provide my son with medication. If they refuse, I planned on contacting a journalist. It may all be futile but I would try.

We need to fast track the process. The FDA recently fast tracked intranasal ketamine. Why can’t we fast track Vanco? Does the FDA need contacted?

Hopefully, something will happen soon! I hope so quickly for your family.

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Hi, to answer your question, my daughter in 21, and college has the BEST insurance because it just covered students who are about 20 and healthy and rarely see doctors. But when she graduates, it’s over. And while, yes, she can be on my insurance, mine won’t cover vanco. Hopefully she will find a job with good insurance but if not, we will have to get her separate insurance, and I’m sure expensive, to cover the $7,000 a month charge. And I too have thought of all the options you suggested but she has a year left so we are safe for now. It was such a challenge to even get vanco, that hopefully getting insurance that will cover it, won’t be so as big of a challenge. We will see.

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Hi! As previously mentioned, if your insurance doesn’t cover vanco pills, simply buy liquid vanco. 1000 mg/day of Firvanq costs about $400 and it’s the exact same substance. There’s some evidence that generic vanco pills aren’t as effective as brand name pills, but this doesn’t apply to liquid vanco. Also, keep in mind that vanco is a FDA approved drug, otherwise you wouldn’t even be able to get a prescription for it. :slight_smile:

I don’t think there is any propect of FDA approval of Vanco for PSC simply because Vanco is no longer covered by patent protection. There is no incentive for a drug company to absorb FDA trial costs when, upon approval, they will have no patent protection to recover their costs.
Without being too political, we all need to consider how important drug pricing and insurance coverage is to us.

Actually, vancomycin is expensive to make. It is cultured from a fungi. Because it is generic the margins are slim. CutisPharma, which has a new oral vancomycin kit Firvanq, is for now donating its product for all PSC clinical studying using vancomycin.
I also am thankful every day that my insurance covers it for my daughter and that she responded. And I am thankful for Dr. Kenneth Cox who discovered this treatment!

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To Joki AND anyone needing help paying for your medications:
Joki- once your daughter graduates, if possible, get her on your insurance even though it doesn’t cover the Vanco. Then have her apply for state Medicaid; she can do this either through the closest office to you, or she can go online to;
healthcare.gov
This way she would have your insurance as her primary insurance & Medicaid as her secondary insurance, which should equal ZERO payments seeing her Dr’s, labs, scans, procedures & any hospital visits and/or stays. My son has been on Medicaid since he was 1st diagnosed at age 17, he’s 20 now, and it has paid for almost everything in full! I don’t know if it covers Vanco since he’s never taken this medicine. He does have PSC but it’s “Autoimmune Schlerosing Cholangitis” without UC or IBD. Because his PSC is brought on by the autoimmune disease he is taking a Rx called “Azathioprine”, (which shuts down the immune system so his body will stop attacking his liver). AZA is also VERY expensive & we couldn’t afford it even after insurance paid their part. He goes to Vanderbilt Hospital in Nashville. The Vanderbilt Pharmacy had us apply for a “Rx grant”. Once he was approved for the grant ANY meds that his Vanderbilt Dr’s prescribe are FREE!

HELP W/AFFORDING YOUR RX’S (USA ONLY)
2nd POST ADDED, RIGHT AFTER THIS ONE, W/EASIER TO READ “SUGGESTIONS”. SORRY!!
•Apply for State Medicaid; check & see if you are eligible for coverage. Either apply through your local office or online at healthcare.gov
Don’t just assume you make “too much” and therefore won’t be eligible for Medicaid, it never hurts to try!!

 •If your doctor is part of a large hospital or organization, for example; my son's GI/Liver Dr works at Vanderbilt Hospital, (Nashville),  the onsite pharmacy offers grants that make your Rx's FREE if you are eligible.

 •Other large pharmacy's such as Walmart, CVS, Walgreens, etc. are in such heavy competition with each other that they now offer all kinds of programs; from small discounts to FREE medications. You just need to ask to speak w/the pharmacist and ask her/him about discount medication programs they offer.

 •My last suggestion....try GoodRx.com

Now, I’m pretty sure they DO NOT cover Vanco, or Azathioprine, but they do help with soooo many other Rx’s. (think about ALLLL the other Rx’s you take when side effects of PSC pop up…nausea, itching, pain, etc.) For example; I take Lunesta (a sleeping pill that my insurance doesn’t cover), and in my little area of Tennessee, this could cost me $350 a month! But, when I use my GoodRx coupon at my Kroger Pharmacy, it only cost me $16.00!!! (Even w/the same Rx., prices vary; w/my GoodRx coupon this exact Rx costs $174.00 at Walmart)!!

*I’m really sorry for the long post, but I truly hope at least one of these suggestions helps someone!
Take care!
Lisa
PS- Joki, congratulations to your daughter on her (upcoming) graduation!!!

Sorry!! It looks like my response post, above, “stretched out” my suggestions on how to help afford Rx’s. Here’s a much easier way to read it:

HELP W/AFFORDING YOUR RX’S (USA ONLY)

-Apply for State Medicaid; check & see if you are eligible for coverage. Either apply through your local office or online at healthcare.gov
Don’t just assume you make “too much” and therefore won’t be eligible for Medicaid, it never hurts to try!!

-If your doctor is part of a large hospital or organization, for example; my son’s GI/Liver Dr works at Vanderbilt Hospital, (Nashville), the onsite pharmacy offers grants that make your Rx’s FREE if you are eligible.

-Other large pharmacy’s such as Walmart, CVS, Walgreens, etc. are in such heavy competition with each other that they now offer all kinds of programs; from small discounts to FREE medications. You just need to ask to speak w/the pharmacist and ask her/him about discount medication programs they offer.

-My last suggestion…try GoodRx.com
Now, I’m pretty sure they DO NOT cover Vanco, or Azathioprine, but they do help with soooo many other Rx’s. (think about ALLLL the other Rx’s you take when side effects of PSC pop up…nausea, itching, pain, etc.) For example; I take Lunesta (a sleeping pill that my insurance doesn’t cover), and in my little area of Tennessee, this could cost me $350 a month! But, when I use my GoodRx coupon at my Kroger Pharmacy, it only cost me $16.00!!! (Even w/the same Rx., prices vary; w/my GoodRx coupon this exact Rx costs $174.00 at Walmart)!!

Happy, healthy days!
Lisa ; )

Hi Lisa, I just read your post and Ill certainly be looking into Medicaid when my daughter graduates in the spring. With.a monthly vanco bill ot $7,000 without insurance, Ill be looking into everything! Thank you so much for reaching out. All great suggestions! Best, Joanne (Joki)

I don’t have any personal knowledge of the following organization, except stumbling on them during web searches, but it seams they have a mission to promote and garner acceptance of Vanco for PSC - and may have made some headway for which it may be more efficient for you to lend support rather than go it alone . just a thought … http://childrenspsc.org RJM