Filling Heparin Prescriptions

[Judy777]

Hello! I thought I would start a thread for everyone that does the home instills and will be needing to get their Heparin prescriptions.

We can add the pharmacies that we have been able to get the Heparin from. I have called various pharmacies in my local area and they have been unable to order Heparin and did not know when they would be able to get it.

I just recently had my Heparin prescription refilled. The Heparin that I received was made by APP (American Pharmaceutical Partners, Inc.). What I have ran into is that I can no longer get the 2ml vial (40,000 USP Units) that is the dosage for my cocktail (40,000 units). The APP Heparin that I just got is a 1ML vial (20,000) in a package of 25. I would need 2 boxes to do the 40,000 units.

My local Walgreens was able to order Heparin.

If you can not find a pharmacy that can order Heparin you can use the following information to order from APP. On their web site they say that Wholesalers or Customers can oder Heparin by calling the number below.

APP: 888-386-1300
http://www.apppharma.com/ click on the link that says Heparin ordering information.


Hospira is also another company see below for contact info.

Hospira: 877-946-7747

Take care,

Judy

[ICNDonna]

Information about companies who sell anything are not usually allowed on the IC Network forums, but given the difficulty people are having obtaining heparin for instillations, I am leaving this one here for your information.

Thank you, Judy.

Donna

[Judy777]

Hi Donna!

Ok thanks for keeping the post up. I'm sorry about that!

[jen74]

I get my heperin from walgreens, thankfully I have had no problems getting it so far ( knock on wood)
Jen

[bunnykinb]

The uro's office is putting in a request for heparin to my medical group. The request will then go through my HMO. I was told that the heparin was covered under my medical benefits and that I didn't have to go through the pharmacy. My pharmacy plan doesn't cover the one you mentioned. I hope all goes well with my request.

Thanks.

[justice4j]

The company already mentioned advised my pharmacist to request a "drop shipment." I was told that takes 5 business days. They were very courteous and helpful when I phoned them.

[bunnykinb]

So how much is the heparin costing you? Just curious.

[sickofmybladder]

I am also going through Walgreens and so far (knock on wood) - haven't had much of a delay - but I do make sure to give them advance notice before I run out (they will let me call it in - 2 weeks before - and then I just don't pick it up until insurance will pay).

[bunnykinb]

My insurance is supposed to pay for the heparin but I haven't received any authorizations yet. I don't know if the insurance will have the supplier mail me the heparin or if it will go through the pharmacy.

[Judy777]

My Insurance company does not cover my Heparin I have to pay out of pocket.

Before the Heparin recalls I would pay $77 for package of 25 vials 4ml had 40,000 USP. Last month it was $98 for a 1ml bottle that only had 20,000 USP that was only 1/2 my dosage since I instill 40,000 usp of Heparin in each instill. I just called my pharmacy two days ago for my refill and it is now $180 for a pack of 25 vials that are 5ml I guess it's 50,000 USP. This is getting crazy the way the price has sky rocketed! I wont be able to afford them soon. I am going to only use them every other day or further if I can stretch it because the cost is so high.

Maybe I should go back to having them done in the Doctors office everyweek and have the Insurance company charged about $600 for each time and they can pay for it! I'm mad! I have called 7-10 different pharmacies to try and find the best price. Walmart/sams usually cheap they wanted $286 for 25 vials of 1 ml 20,000 usp. Other prices I got were around $180 and that was just for the 1ml vials. It seems baxter was the only one who made the 4ml vials because I have not been able to get the 4ml vials since the recalls.

Judy

[bunnykinb]

If the insurance comes back to say that I have to pay for it, the cost may be too much. I'll see. If the cost is outrageous like yours, it is an inconvenience going to the doctors to have the instill, but it sounds more cost effective. I have a $25 co pay each visit.

[Judy777]

I just got my Heparin prescription refilled. It was $193 for a box of 25 vials that are 5ml vials with 50,000 USP per vial. I will only need to draw out 4ml (40,000 USP) for my instill. Since the price has more than doubled I am going to do them only every other day or longer if I don't need it that frequently.

[justice4j]

Hi,

Has your prescription coverage changed? I'm sorry this costs so much. I have a few choice words for those making profits off the backs of IC and other patients who need medication. ******!**))_:cussing::rant:

[justice4j]

Judy,

Didn't see your first post. But, here's a book for you. I am reading it an am halfway finished. "How to Fight Your Insurer and Win" by The Insurance Warrior, Laurie Todd.

Laurie Todd fought her insurer for treatment for a rare cancer of the appendix. She successfully fought and MADE her insurer pay for the most beneficial treatments.

She speaks all over the country.

She not only won against her insurance company, but won her battle against cancer.

[justice4j]

I have a lousy BCC policy and I had to fight for 2 months to get them to cover Heparin. Then two years ago they tried to rescind the coverage and I had to fight another month for that.

My usual co-pay is $45.00 for 25 vials of 50,000 U/5cc Heparin. If I remember correctly, they somehow covered it under medical instead of pharm. I wish I remembered the details.

[justice4j]

I hit send too soon.

I haven't filled an Rx in over a month, so I don't know what the price is now that the supply is less than usual. I'm using Elmiron now that my uro changed my Rx.

[Judy777]

Hi Janet!

Thanks for the info. It does upset me that the rescue instills are one of the most helpful treatments and the Ins. Co. does not pay for the Lidocaine, Sodium bicarb or the Heparin. My last Ins. plan did pay for the Heparin but would not pay for the needles or the caths.

You won't beleive it, but in January I just changed health Ins. My Husbands work had a better plan this year. They were paying 90/10 and it was way less the my works plan. This plan was less money for the co pays for the other meds Elmiron, Lyrica etc.. and the monthly premium was a little less and I only would have had 80/20 coverage on my old plan. Bottom line I thought I would be saving money and getting more coverage. Now with the new plan not covering my Heparin I'm not saving money I am spending more. I only paid an $8 co pay for Heparin with the other Ins.

I learned to do the treatments at home to save money and it's way more conveniant to do them at home as often as you need them. Meanwhile the Doctors office charge the Ins. Co. like $600 to do a 10 second installation and I thought that was ricdiculous!

Judy

[justice4j]

Note from ICNDonna: It is important to discuss treatment options with your physicians. The information provided in this message is one person's opinion.

Judy,

Since you are in group coverage, you actually have a better chance of fighting for and getting Heparin coverage. Try Laurie Todd's book "How to Fight Your Insurer and Win." She has some great ideas for fighting for coverage.

If you're in a large group plan (over 50 insureds) you have a better chance. I would point out to them that by doing instillations at home, it is more COST EFFECTIVE for both the insurance company and you. You need to find out also what the INSURANCE is paying for Dr.'s visits beyond your $25 co-pay.

Also, see if your Dr. will increas your Elmiron quantity by 4 capsules a day so that you can do instills 2X a day with 2 capsule contents put into each liquid portion of the instill. If they pay more for Elmiron, it's a way of getting around having to fight them for Heparin.

If they stall on the increased quantity of Elmiron, have your Dr. write a letter stating you have "chronic, severe IC and that the dose your are prescribed is within the acceptable range for patients with severe IC." Before you do that, search for some journal articles by C. Lowell Parsons, M.D and I believe there is a transcript of an interview with him on this site where he says he prescribes Elmiron 300 mg. 2X a day for IC. You may know that Dr. Parsons was one of the principal researchers of Elmiron. If you are by chance in southern California, it might even be worth the trip to San Diego to see him. He just changed my Rx from Heparin to Elmiron b/c I can't get Heparin and I've not been doing as well the last 8 months.

Now, that would only get you 1 instill with the 2 extra capsules. But, you might find that one instill with Elmiron will keep the office instills to a minimum. I would also tell your Dr. that you have a cost concern. Sometimes Dr.'s will help you out in that way if you present all the facts when you ask for the increased quantity of Elmiron for instills, especially if you have a journal article printed out for them to back up the medical reason for your request.

I wish you good luck getting this solved to your satisfaction. It does take some time and a lot of tenacity. Some of my friends affectionately and with praise intended call me a "bulldog" because I like the challenge of insisting that I be given what I need.

I just got a $50 gift card from a pharmacy after I complained and rightly so, about 2 pharmacists who were not proficient enough in English to be doing their job competently. I explained that I was an RN and advised them that I had difficulty communicating with both of them, not because of accents but because a lack of understanding of the subtleties of English used in conversation. I actually called the corporate national office and the district pharmacy supervisor called me.

I also told them I felt that they were vulnerable to liability stemming from the lack of sufficient English proficiency of their pharmacists. I also informed them that I had no confidence in either of their pharmacists and since there was a community nearby of Hispanic immigrants that I could imagine that they would have more problems than I did, adding to the possibility of liability.

That liability line is good for a lot of situations. :woohoo:

Hope at least some of this was helpful.

[justice4j]

Note from ICNDonna: It is important to discuss treatment options with your physicians. The information provided in this message is one person's opinion and is not necessarily approved by the FDA.

Judy,

Don't let your insurance pull the "investigational" thing with you. Heparin and Elmiron, we all know, are standard and prudent practice in treating IC. Find a journal article for that as well.

You can do it! Your husband's HR may be willing to help you, but go there armed with your studies too.

Most employers are feeling the pinch of insurance benefit costs and want to make sure they are getting what they paid for in terms of their portion of employee insurance benefits.

If you win this in some way, you have the satisfaction of knowing that you prevaled not only for yourself, but another IC patient in the company that is having the same problem.

It's very satisfying to win what you are due.

[bunnykinb]

Did your insurance cover heparin instills if you had this done at the uro's office before doing home instills?

[Judy777]

My old Ins. plan did cover the Heparin instills in the Dr's office and they paid for most of my Heparin it was only an 8 dollar co pay. New plan does not cover Heparin and I am about to see what they pay on the office visit/instill that I just had done a couple of weeks ago in the Drs office.

Judy

[bunnykinb]

The dr had asked the nurse if I was bringing in my own heparin but she said no because the insurance wants a request for everything all at once when I can really do the instills 100% by myself.

[CathyKi]

Is there another drug we could use in my instill?

[L. Thomas]

So how much is the heparin costing you? Just curious.

My insurance has a co-pay of $5 for generic. I can also get a 90 day supply for all my routine meds if the Rx is written for "90 days as directed". That means I can get 90 1cc vials for $5. if my MD orders one a day.

[bunnykinb]

Isn't a 1cc vial tiny?

[CathyKi]

Can someone please tell me where I can get some heparin an if there is a different drug we could use in my instill? My pharmacist can't find any because of the recall.

[L. Thomas]

Abraxis is the manufacturer for the heparin my pharmacist found. He said it was hard to find one since the recall.

1cc is a very tiny vial. I know that Baxter had several strengths that came in the 1cc vial. They had a different color lable for different strengths. My instill is with 10,000 units and is in a 1cc vial.