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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsAny ideas on how to afford a drug that costs $1000 / month?
Last edited Wed Oct 7, 2015, 05:46 PM - Edit history (1)
I need a little brainstorming from the community. My husband is on dialysis and is having issues with his phosphorus for almost one year. In order to bring down his phosphorus, his doctor prescribed phosrenol. Unfortunately, phosrenol costs $1000 per month and my husband's drug plan from work won't cover it until my husband tries and fails on 3 other alternatives. A lot of drug plans are quietly forcing people to try cheaper alternatives before they pay for the really expensive one. So they are starting hubby on phoslo. It seems to have some effect...don't know if it will do the trick. Hubby's phosphorus levels went from 8.3 to 7.9. Still way too high but are waiting if Phoslo can bring it down.
I am really concerned about this policy of trying 3 drugs before you get the drug you need. Hubby is doing well on dialysis except for phosphorus. For those of you not in the know about phosphorus levels, it is very necessary to bring down phosphorus as high phosphorus levels damage the heart. Dialysis patients often die from heart failure and the risk goes up as time on dialysis increases. And that day is coming soon.
We have really good doctors -- experts in their field and I want to do what the doctors want. We have made it this far so good and we know they prescribe a drug for a reason. Hubby is very delicate with many other health issues so we really want to toe the line.
Thought about getting Medicare Part D to cover drugs. On Medicare D, phosrenol costs $250/ month. Right now hubby has Aetna and cvs/Caremark from work being primary and Medicare secondary. The insurer at the dialysis unit told us not to sign up for Medicare part d as it would flip our insurances such that Medicare would be primary and Aetna would be secondary. Hubby would fall into the donut hole and this would not be cost effective.
Looked around on Internet and found Us based discount for phosrenol for $800 per month. Looked at some overseas pharmacies and saw $400 in Europe. I am very uncertain about buying medicine over the Internet as we just can't fool around and get a bad formulation. This is just for the starting dose...lord knows what the costs would look like if hubby needed more. Our income is way to high to qualify for low cost insurance programs offered by drug companies.
Also, I need to plan for the future. Hubby went on dialysis in December. His thyroid cancer had a recurrence in January and he got renal cancer in April. Fortunately, these cancers did not require chemo or radiation. Just surgery. I am afraid going forward he may need some very expensive medication. I really don't want to monkey around with trying three different drugs. What to do?
I am open to any good ideas.
Earlier I had posted for an indiegogo campaign to raise money for a flight to Kentucky for a transplant as the waiting list is much shorter (18 months vs 5 years). Our campaign went nowhere as I am really not the person to do it. The whole issue of asking strangers for money is way too humiliating and too emotional. It took a huge effort to do what little I did. Also, it would take many rounds of funding. We did sort out getting my husband' s flight paid for as an acquaintance put us on to angel Medflight which takes insurance. He is precertified and Angel Medflight works with attorneys to make sure the insurance company pays up.
mY husband is now on 2 lists: one in Kentucky and one in Philadelphia. Because of the cancers, hubby is off the active list, but still accruing time. If nothing else happens, he will be back on the lists at the end of next year and will move to the top of both lists as he accrued enough time for both hospitals. Doesn't mean he will kidney as their are many people waiting. As his health deteriorates, he will become less and less eligible.
So, in conclusion my "ask" is this, does anyone know how to pay for expensive drugs without going bankrupt? We can do appeals to the insurance company. I am well versed in that. /sarcasm. Is there any good regular supplemental programs that cover drugs?
Also, once again, is there anyone who can donate a kidney? It won't happen until end of next year as there is a mandatory wait period because of cancer. I am hoping hubby's heart won't give out and he doesn't have a stroke. Our insurance company would cover all costs as dialysis is horrifically expensive ($100,000/year). There is a bunch of testing that needs to be done and the hospitals have a process to make sure you are very certain you want to do it. It takes several months. It would be truly the gift of life. People who donate say it is one of the best things they have ever done. Over at www.kidneymitzvah.com, there are a lot of stories from donors and patients. We would be eternally grateful.[link:http://www.kidneymitzvah.com|
Thanks everyone for listening.
seaotter
(576 posts)cap
(7,170 posts)Going from $1000/ share to $6000/share.
I wonder why
Best wishes.
MineralMan
(146,192 posts)assistance program. If you qualify, you might be able to save a lot.
https://www.shire.com/patients/patient-services/shire-cares
cap
(7,170 posts)Although we won't have much if we don't sort things out... We may eventually get there...if not with phosrenol but with something else. Just don't want hubby's health to get compromised in the process.
haele
(12,581 posts)Maybe not until January, but even though our income is considered "too high" and since we have "good insurance" and an HSA, most of these companies have a window at the beginning of the year that the doctors can apply for patients who are above the assistance level but for whom paying for the drug will still be a hardship.
My husband's doctor was able to get him on a Humira plan from Abbott instead of us having to come up with $1200 a month for the first three months to reach our $3K ExpressScripts deductible. It now only costs us $300 total for the year every January.
Good Luck!
Haele
I was on a drug that cost $900 a month but I found a three month supply from a Canadian pharmacy for $130.00.
Try:
http://www.onlinecanadianpharmacy.com/tier/product.aspx?DrugName=Fosrenol&Generic=no&Dosage=250mg
haikugal
(6,476 posts)cap
(7,170 posts)But hubby takes 1000 mg so the cost per month is $429. If it were the only drug on our list we could swing it but he is on multiple drugs so our total monthly drug bill is much higher.
ryan_cats
(2,061 posts)I'm sorry to hear that. There are other viable solutions in this very thread.
I searched and couldn't find the 1 gram size cheaper.
I hope he as well as you get good news soon.
Ghost in the Machine
(14,912 posts)My son gets a medication that his insurance doesn't cover and we used this. You can download the app on your smart phone, or get a card sent to you. It will compare prices with several pharmacies in your area and show you the cheapest, along with the others.
My son's medication was only $33.00, but with this app it only costs $8.19!
Good luck to you and yours...
Peace,
Ghost
cap
(7,170 posts)But on this site it is running over $800/month
Ghost in the Machine
(14,912 posts)I have read that you can contact certain drug manufacturers and they can help you out with discounts, coupons, or some trials/samples...
That's all I've got, sorry I couldn't help more.
Peace,
Ghost
Response to cap (Original post)
frizzled This message was self-deleted by its author.
cap
(7,170 posts)Although it frosts my chaps to know that the ingredients are not expensive.
Response to cap (Reply #14)
frizzled This message was self-deleted by its author.
cap
(7,170 posts)mY dad was a chemist. oNe time I had anemia and he gave me the active ingredient, iron in a glass of water. It tasted nasty and did not do the trick.
Can not take a chance with hubby.
I know you mean well.
bkkyosemite
(5,792 posts)It cost $1254 for three month supply (in the Medicare D donut hole). Got the same company out of Canada from Canada Drugs online for $152.88 but the fillers were different (in active ingredients). Then I called company in U.S. and I said I cannot afford it and do not have income low enough. They said they had a discount program for those on Medicare and I paid $150. for three month supply. Funny they did not let anyone know unless you called them. Call the company who makes it call CanadaDrugs . com etc. and ask if the company is in Canada too.
cap
(7,170 posts)On Canada drugs online it is $383/month. I will try and call drug company, shire and see what happens.
Thanks so much.
Comrade Grumpy
(13,184 posts)cap
(7,170 posts)I am thinking a stint in G'tmo.
mercuryblues
(14,491 posts)also contact the manufacturer. They will almost always provide a discount.
here is a link for details on one such program.
https://www.shire.com/patients/patient-services/shire-cares
cap
(7,170 posts)check out the other link?
I would suggest you call your Dr and let him know how much it costs per month and ask for something else.
I would not doubt that he prescribed this after a pharma rep wined and dined him. Here is a link to check out
https://projects.propublica.org/docdollars/
cap
(7,170 posts)Checked them out. One doesn't take any money and the other received a whopping $72 for a medical device.
His main kidney Doctor has called insurance company and no luck. Must try cheaper alternatives first.
For my husband, it is really important to take the medicine prescribed. Even with generics, sometimes there is just too much. Of a difference. He is trying th cheaper alternative, phoslo. we shall see if it does the trick.
Because my husband is so delicate, I want the first line treatment and not go through several trials of other drugs .
Thanks for thinking of us.
cap
(7,170 posts)We make too much money.
Marrah_G
(28,581 posts)cap
(7,170 posts)cap
(7,170 posts)sharp_stick
(14,400 posts)probably have to wait for the insurance company but the manufacturer has some good copay assistance.
http://www.fosrenolcopay.com/Default.aspx
If you can get your Doc to give him the free trial and show that it does the trick sometimes your insurance company can be persuaded to skip the try a bunch of other stuff first.
cap
(7,170 posts)He has had samples from doctors office before they moved him onto foslo.
Thanks
cap
(7,170 posts)Don't know if it would work for Canadian pharmacies. Even getting a $150 discount from a discount American pharmacy would bring down cost to $600.
Thanks a lot for thinking of us.
sharp_stick
(14,400 posts)Try giving Shire Canada a call: Call: (800) 268-2772
Or an email: medinfoglobal@shire.com
If you get the sample and your doctor finds out that it's more effective than the others or medically necessary you should have a pretty good case to convince your insurance company to cover.
Good Luck.
Not in Canada ... Was thinking of ordering from Canada .
Doctor_J
(36,392 posts)cap
(7,170 posts)Hubby is of Italian descent . It will take one year to get it.
Sad isn't it that US citizenship can't take care of us.
jeff47
(26,549 posts)Which, depending on the price of the medigap plan, may make Medicare-D a workable option.
cap
(7,170 posts)But which policy has good drug coverage
jeff47
(26,549 posts)pugetres
(507 posts)Is your husband taking 1000mg with meals for a daily total of 3000mg? I'm retired now but I think I recall seeing that sort of medication ordered with meals (3 times a day).
The last option at that link is for 500mg tablets - 90 count. Ordering two of those each month would cost $210 plus the shipping.
I'm only ever charged $10 for the postal air service for my medications. I also get a 3-month supply so I'm only paying the shipping 4 times a year. And, the pharmacy has a loyalty program so my medications get a tiny bit cheaper each time I reorder.
I hope you get something worked out.
cap
(7,170 posts)Because of quality control.
The 2 500 mg for $210 is from India. hUbby is fragile and is on a fistful of medicine as it is. Wouldn't know if the drug would be pure and if not how it would interact with other meds.
Thanks for trying
pugetres
(507 posts)is what it is advertised to be. But, I understand the fear. The US pharm industry has done a great job convincing people that it is a risky proposition. Again, I hope you work something out for your spouse.
cap
(7,170 posts)It's liability....if a major us or European manufacturer with a subsidiary in the us sells a drug that is not what it is advertised, we can sue easily. Indian manufacturers without a us presence, not so easy.
It's why hubby doesn't go to India for kidney transplant, medical malpractice is not what it is in the US. We have already been through one very surgery.
Thanks for trying to help.
TygrBright
(20,733 posts)We are probably going to see people committing crimes so that they can be put in jail, then suing that system to provide them with the meds they need, more and more often...
NOT a suggestion for you and your husband, sorry, just a comment.
There are some good suggestions in this thread, and if no one else has made it yet, I would add calling your congresscritter's constituent service rep, see if they can get you linked to any affordability programs. At least it will put your problem higher on their radar...
sadly,
Bright
cap
(7,170 posts)Using Medicare/Medicaid .
I know we are both just joking.
Flying Squirrel
(3,041 posts)cap
(7,170 posts)Thanks any how
Yo_Mama
(8,303 posts)What dosage did they prescribe?
Yo_Mama
(8,303 posts)$130 at northwestpharmacy.com
Generally they start with three (1,500) mg a day and keep testing, and probably the needed dose will be between 1,500 mg and 3,000 mg a day. So that would be between $130 and $260 a month.
Sometimes if the doctor appeals and shows that the prescribed drug did work but a covered alternative did not you can get it through.
cap
(7,170 posts)I would have to inquire at northwest pharmacy about the generic. Did not know about generic prescription. Also I will have to check to see if it comes from India. Don't want to use Indian drugs because husband is fragile.
My understanding is that they want him on a high dose of 1000 mg 3 x a day. He had been using Renvela but it hasn't dropped the phosphorus.
We are the appeals process as well as an alternative, phoslo.
Yo_Mama
(8,303 posts)If you used the generic chewables 500 mg @ $90 for 90 you could get 3,000 mg for $180 a month. He just takes two at each meal.
It should work.
You would have to contact the place to get the company, but I am sure it is an Indian firm. Generally, all the ones with LTD are Indian or Bangladeshi.
The US-approved version, Fosrenol, was filed by Shire. On the drug app, it says that the manufacturer for the oral chewables is Patheon in NC, but Patheon is a shell company, it appears, that was set up in 2014.
http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=f10776b2-2c25-4343-aabe-68f302e5cb54
http://www.bizapedia.com/nc/PATHEON-MANUFACTURING-SERVICES-LLC.html
It is really a Patheon Inc. division. Patheon Pharamaceutical Development Services is a contract manufacturer for pharmaceuticals.
http://www.yellowpages.com/greenville-nc/mip/patheon-manufacturing-services-772351
A German company makes the powdered form, and probably provides the powder to the Patheon contractor who makes the chewables.
ProgressiveEconomist
(5,818 posts)at http://www.rxassist.org/search .
Each manufacturer has its own programs, often both for insured and underinsured patients, as well as for the uninsured.
Eligibility rules differ by program, so it's worth checking multiple programs if you are taking multiple costly medications.
cap
(7,170 posts)Mentioned above.
orpupilofnature57
(15,472 posts)REP
(21,691 posts)Sorry I can't help with the kidney. I'm B- so when I become Stage IV, I'll be listed because my wait time is expected to be "yeah, right." Additionally, I have primary idiopathic FSGS and two other diseases present, but FSGS shows up in the donor kidney as they're stitching it in. I wil be buying a home hemodialysis unit if/when I need dialysis as my survival will be better with daily dialysis.
Try posting another GoFundMe. An open round trip ticket isn't that much and multiple listings will give you a better chance. Good luck!
Hope you can stave off stage 4 kidney disease.
riderinthestorm
(23,272 posts)She had her double transplant within 6 weeks of getting on the list in CA.
Sometimes being a rare type works to your advantage.
Good luck
cap
(7,170 posts)And O is the universal donor. Blood type O has one of the longest waiting lists. hOwever, he will take any donor. There is the UNOS paired match program that swaps around all the kidneys until Everyone in a chain is matched up. Also, Columbia Presbyterian has their own matching program where if you can find a donor they will match you up even faster.
If anyone thinks they know a donor, please spread the word. We are looking for a Good Samaritan.
Thanks.
riderinthestorm
(23,272 posts)Act_of_Reparation
(9,116 posts)Medicare Part D is like the ACA health plans. The government subsidizes independent insurers to provide pharmacy coverage to seniors or the disabled at a discount. There are literally hundreds of plans, and each plan has its own formulary. Just because one Medicare Part D plan covers phosrenol at $250 doesn't mean they all will, so if that's the route you want to take, please pay very close attention to the formularies when you sign up for a plan.
Additionally, the formularies should tell you whether or not a medication requires prior authorization for coverage. Part D plans aren't much different from standard employer plans in that for many expensive drugs, patients will be required to try cheaper alternatives or have a physician justify the prescription before the drug will be covered.
ladyVet
(1,587 posts)Yes, you read that right. 2K a day for medication. It's some sort of cancer drug he needs for his bone marrow disease. His doctor got the company that makes the pills to give them to him. I don't know how they worked it out, but it costs my parents nothing for him to get this medicine, which is keeping him alive.
My father had insurance through his work at the time, but he has since retired and my parents only have Medicare now. The pills still come, and are still free.
You might talk to your doctor and see if the company that makes the drug will work something out. From what I understand, this is common, for drug companies to have programs for people who can't afford medications that are super expensive.
Vinca
(50,170 posts)I've been thinking about those super expensive drugs people require to stay alive and come to the decision I'll have to face the end if I'm in such a position. Average people can't afford to stay alive anymore. The only thing I would try would be getting them from a country that cares about its citizens and offers them at an affordable price. My husband got prescriptions from a Canadian pharmacy once and was happy with the experience. They even called him on the phone when there was some confusion about the order.
But the online Canadian pharmacies are way too expensive. This is not the only very expensive drug we will need . Cancer drugs can be very expensive too. It is the way many insurers are going....make you delay taking the drug of choice as long as possible. The less you use an unprofitable medicine the more money they make.
Vinca
(50,170 posts)CBGLuthier
(12,723 posts)My wife's medication jumped from reasonable to over 500 a month. Fortunately we were planning a move anyway and the country we moved to has affordable health care. Not even socialized or anything just not a bunch of greedy assholes getting rich on misery and sickness. I include the doctors too.
cap
(7,170 posts)Sad isn't it. USA: No home for the old and sick.
Le Taz Hot
(22,271 posts)When my husband was out of work for 3-1/2 years we had NO money for my $300-a-month asthma medication. I scraped together money to go to the doctor and she told me about the program. I got online, printed out the application, filled out my part then gave it to my doctor who filled out her part and attached a copy of the prescription. I got a year's supply of Advair for free. I think it's called the "Patient assistance" program and it literally saved my life.