Any 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.
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Best wishes. 
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
