ttc | pregnancy | birth after loss > Anyone using 17p/Makena?
Hi Eliza: Your question is very timely for me. I am now 16 weeks pregnant after having lost my daughter at 22 weeks. (I've written about 5 posts in the pregnancy section and, for whatever reason-- superstition, fear, guilt, paranoia-- have not posted them. As you can tell, I've been very anxious. So far, all is well, but I live in fear of the proverbial other shoe dropping. I am afraid that, once my happiness is out there in the world, it will be snatched away. But I digress...). I wasn't able to open your attachment, but I assume it discusses the recent astronomical price increase of the 17p shot.
By way of background, my preterm birth was not the "classic" one that typically warrants 17p in the future. I experienced bleeding for over two weeks prior to my water breaking. Ultimately, it was determined that I had an acute uterine infection, most likely from an amnio that was performed well over three weeks earlier. The infection likely caused the placenta to start abrupting, hence the bleeding. Complex circumstances aside, my high risk doctors still think that 17p would be a good idea and I agree.
When I heard about the insane price increase a week or so ago, I immediately called my insurance company and was told that "until further notice," 17p would still be covered for women who had experienced a previous preterm labor.
Yesterday, before filling down the prescription, my OB's office contacted the insurance company and was told that they'd cover $7.50 for the drug if from a compounding pharmacy (i.e. a generic) and 50% of Makena. Fortunately, they located one compounding pharmacy, Wedgewood Pharmacy in NJ, that is still making and sell the generic version. I spoke directly with Wedgewood. They told me that, as of now, they are still selling the drug and it is "flying off of their shelves." However, they realize that at some point, probably in the not so distant future, they will need to stop for legal reasons. Most compounding pharmacies have already stopped manufacture and sale. I am lucky because my doctor's office called in 2 vials worth (each vial holds 10 doses... so that will take me through 20 weeks, or until about 36-37 weeks). The cost was $125 per vial. I am happy to only pay $250 for the medication when the alternative would be an enormous and most likely prohibitive burden. (I have no idea how much a full vial is from Makena... I don't know if a vial is $1500 or each weekly dose is $1500...From the news articles I read, it sounded like $1500 was the weekly cost).
Eliza, do you think you could contact your OB to see if you could pre-order it from a compounding pharmacy while you still can? It may be worth it to lay out the money now rather than facing the unknown later.
The whole situation is truly sickening. I fear that insurance companies will decide to take their chances in dealing with the costs of a premie, rather than paying for the drug. The pharmaceutical company that makes Makena says that they'll help low income women. That's all find and good, but what about everyone else? It is all just an example of a monopoly gone amuck. Shame that March of Dimes supported this.
By way of background, my preterm birth was not the "classic" one that typically warrants 17p in the future. I experienced bleeding for over two weeks prior to my water breaking. Ultimately, it was determined that I had an acute uterine infection, most likely from an amnio that was performed well over three weeks earlier. The infection likely caused the placenta to start abrupting, hence the bleeding. Complex circumstances aside, my high risk doctors still think that 17p would be a good idea and I agree.
When I heard about the insane price increase a week or so ago, I immediately called my insurance company and was told that "until further notice," 17p would still be covered for women who had experienced a previous preterm labor.
Yesterday, before filling down the prescription, my OB's office contacted the insurance company and was told that they'd cover $7.50 for the drug if from a compounding pharmacy (i.e. a generic) and 50% of Makena. Fortunately, they located one compounding pharmacy, Wedgewood Pharmacy in NJ, that is still making and sell the generic version. I spoke directly with Wedgewood. They told me that, as of now, they are still selling the drug and it is "flying off of their shelves." However, they realize that at some point, probably in the not so distant future, they will need to stop for legal reasons. Most compounding pharmacies have already stopped manufacture and sale. I am lucky because my doctor's office called in 2 vials worth (each vial holds 10 doses... so that will take me through 20 weeks, or until about 36-37 weeks). The cost was $125 per vial. I am happy to only pay $250 for the medication when the alternative would be an enormous and most likely prohibitive burden. (I have no idea how much a full vial is from Makena... I don't know if a vial is $1500 or each weekly dose is $1500...From the news articles I read, it sounded like $1500 was the weekly cost).
Eliza, do you think you could contact your OB to see if you could pre-order it from a compounding pharmacy while you still can? It may be worth it to lay out the money now rather than facing the unknown later.
The whole situation is truly sickening. I fear that insurance companies will decide to take their chances in dealing with the costs of a premie, rather than paying for the drug. The pharmaceutical company that makes Makena says that they'll help low income women. That's all find and good, but what about everyone else? It is all just an example of a monopoly gone amuck. Shame that March of Dimes supported this.
March 25, 2011 |
Steph
Steph
Eliza,
I have been prescribed progesterone 17 P in an injectable form. I live in Canada and the pharmacist told me this drug was an astronomical price in the states versus here. My cost is $27 per week. He said it's a compound of 3 drugs so not many pharmacies make it.
The price difference seems absolutely ridiculous. I wish you could buy it here. I think you would need a prescriber with a Canadian license. The unfairness is cruel.
I have been prescribed progesterone 17 P in an injectable form. I live in Canada and the pharmacist told me this drug was an astronomical price in the states versus here. My cost is $27 per week. He said it's a compound of 3 drugs so not many pharmacies make it.
The price difference seems absolutely ridiculous. I wish you could buy it here. I think you would need a prescriber with a Canadian license. The unfairness is cruel.
March 25, 2011 |
diana
diana
It's a secondary treatment option for me, so I'm not terribly concerned yet. The biggest problems were caused by a damaged cervix for me, and the 17p is supposed to be precautionary more than anything (because I did in fact go through labor and they aren't 100% sure why - classic cervical incompetence is not generally accompanied by true labor).
I'm not sure if insurance companies will buckle or not - it is less expensive than an average NICU stay, but it's also not a guarantee against a NICU stay. I really think the only 2 things that will drop the price are insurance companies (including Medicaid) will refuse to play ball at that price. That is the biggest motivator, because that is the profit margin disappearing before their eyes. The other - and what I'm really hoping for - is that the Congressional committees being formed to investigate and/or an FTC investigation is launched that forces them to reduce the price.
I'm not opposed to recouping some R&D costs (though much of the R&D here was paid for by grants . . .) or a company making a profit. I am opposed to them being given exclusive manufacturing rights and being allowed to price gouge to the tune of 100-fold increase in price. It's disgusting.
I'm so glad you got those vials, Steph. That is excellent news for you. Compounding pharmacies have already been sent cease and desist notices with threats of lawsuits under patent laws by KV.
The thing that mildly amuses me is that if someone were to write this down and make a movie of it, it would be the most overly dramatic and cliched mess ever. Dead babies! Evil corporation! Greedy money grabs! Goverment lobbyists and cronyism! Only - it's real.
I'm not sure if insurance companies will buckle or not - it is less expensive than an average NICU stay, but it's also not a guarantee against a NICU stay. I really think the only 2 things that will drop the price are insurance companies (including Medicaid) will refuse to play ball at that price. That is the biggest motivator, because that is the profit margin disappearing before their eyes. The other - and what I'm really hoping for - is that the Congressional committees being formed to investigate and/or an FTC investigation is launched that forces them to reduce the price.
I'm not opposed to recouping some R&D costs (though much of the R&D here was paid for by grants . . .) or a company making a profit. I am opposed to them being given exclusive manufacturing rights and being allowed to price gouge to the tune of 100-fold increase in price. It's disgusting.
I'm so glad you got those vials, Steph. That is excellent news for you. Compounding pharmacies have already been sent cease and desist notices with threats of lawsuits under patent laws by KV.
The thing that mildly amuses me is that if someone were to write this down and make a movie of it, it would be the most overly dramatic and cliched mess ever. Dead babies! Evil corporation! Greedy money grabs! Goverment lobbyists and cronyism! Only - it's real.
March 26, 2011 |
eliza
eliza
I'm not currently using 17P as I'm not currently pregnant. But, I did use a compounded pharmacy version of it during my pregnancy with my first pregnancy. Unfortunately, I lost my daughter anyway. Most likely, I will have to use it in the future given my *now* history of premature labor and delivery. So, I'm following this issue very closely. Today, I came across a new article in the Washington Post (http://www.washingtonpost.com/national/fda-approval-of-drug-to-prevent-preemies-prompts-price-jump-from-10-to-1500/2011/03/04/AFmRo6qB_story.html?hpid=z3) that gives more information on what various professional and government agencies are doing about the abhorrant pricing of Makena.
March 29, 2011 |
Mandy S
Mandy S
FDA has announced they will NOT prevent compounding/specialist pharmacies from mixing 17P:
http://news.yahoo.com/s/ap/20110330/ap_on_he_me/us_med_premature_birth_drug
http://news.yahoo.com/s/ap/20110330/ap_on_he_me/us_med_premature_birth_drug
March 30, 2011 |
Anon
Anon
Eliza - I completely agree about the movie! If only it were the plot of a film rather than real life. I hope you will be able to track some down at an affordable price should it prove necessary (or to have as a precaution)
Steph - I am so pleased to read your news but I can understand the anxiety. I know that I found the end of the second trimester extremely tough after losing my daughter to preterm labor at 23 weeks. I'm so glad you have those two vials and I am hoping so very much that you will get to 36-37 week point.
It makes me feel so very sad that this price increase could place patients and insurers in a position where they are weighing treatment costs against those of a NICU stay. Having been through a relatively long NICU stay with my surviving daughter, it is not something that I would wish on any parent and, perhaps even more so, on any child. Whilst I appreciate that treatment with this drug is no guarantee, preterm birth can have absolutely shattering consequences for everyone involved. It seems wrong that a company should be looking to reap such enormous profits from its prevention.
Steph - I am so pleased to read your news but I can understand the anxiety. I know that I found the end of the second trimester extremely tough after losing my daughter to preterm labor at 23 weeks. I'm so glad you have those two vials and I am hoping so very much that you will get to 36-37 week point.
It makes me feel so very sad that this price increase could place patients and insurers in a position where they are weighing treatment costs against those of a NICU stay. Having been through a relatively long NICU stay with my surviving daughter, it is not something that I would wish on any parent and, perhaps even more so, on any child. Whilst I appreciate that treatment with this drug is no guarantee, preterm birth can have absolutely shattering consequences for everyone involved. It seems wrong that a company should be looking to reap such enormous profits from its prevention.
March 31, 2011 |
Catherine W
Catherine W
While the FDA announcement is good/welcome, there are still a lot battles to be fought. There is nothing preventing KV from suing compounding pharmacies that continue to produce 17p, and some are saying they will not continue for that reason (big corporation lawyers could tie them up for years). It is anticipated that KV will try this out in court if compounding pharmacies don't stop producing it. Their profit margin depends on this drug, given the recent troubles their company has faced.
Oh, and according to Washington Post, KV has just announced a price slash from $1500 per dose to $690 a dose as well as an expanded assistance program and a new rebate program for Medicaid states. Better, but still outrageous.
(link: http://www.washingtonpost.com/national/pharmaceutical-company-slashes-price-of-preterm-baby-drug-makena/2011/04/01/AFpP9hGC_story.html)
Oh, and according to Washington Post, KV has just announced a price slash from $1500 per dose to $690 a dose as well as an expanded assistance program and a new rebate program for Medicaid states. Better, but still outrageous.
(link: http://www.washingtonpost.com/national/pharmaceutical-company-slashes-price-of-preterm-baby-drug-makena/2011/04/01/AFpP9hGC_story.html)
April 1, 2011 |
eliza
eliza
I'm following this story quite closely, and am frankly quite horrified by the way much of this has unfolded.
(for those who don't know, a concise summary can be found here: http://www.stltoday.com/business/local/article_bda7ebe9-ee6c-5d8b-b4e8-09daf6399ede.html)
If you are on this treatment, is this affecting you?