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Insurance, Finances, Disability, Veterans Benefits Your finances, insurance, job issues, and veterans benefits

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  #1  
Old Fri Mar 28, 2008, 03:35 AM
DomesticDeeva DomesticDeeva is offline
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Location: Washington
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Unhappy Neupogen/Neulasta - BC of Idaho Maxed RX Benefit :(

I have exhausted all means of finding financing to cover the cost of this expensive injection drug. Our daughter requires daily injections of neupogen or weekly injections of neulasta which is even more costly. This drug is just one in her immunosuppressive drug therapy, but it's the most costly. Blue Cross of Idaho has an annual $3000 maximum pharmacy benefit and they refuse to bill this injection drug under our major medical benefit (and we have already met our annual plan RX benefit.) We are yet to qualify for any state assistance and nor for any pharmaceutical company financial aid programs nor for any social security or local finance aid programs. I have had to quit my full time job to take care of our daughter full time and my husband's income is just above the annual wage incomes that are set for any financial aid programs. We are filing for bankruptcy this month and all of our credit cards are maxed. None of the Canada online drug companies sell Neulasta for less than $3500 per vial. Has anyone else run into this problem and if so, do you have any suggestions for us? The social worker at our daughter's hospital as well as the Dept of Health and Social Services as well as Blue Cross have been unable to suggest any other alternatives.
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Shana & Matt, parents to daughter, age 11, diagnosed Very Severe Aplastic Anemia Feb 2008 (at age 10); currently undergoing immunosuppressive drug treatments.
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  #2  
Old Fri Mar 28, 2008, 10:03 AM
Marlene Marlene is offline
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Have you taken a look at the Finance, Insurance,etc section/folder. You may find something there to help you or you even send a private message to a member who was/is in a similar situation who may not be checking the formum regularly.


So sorry you are having problems with BC. You certainly do not need the added stress.

May I ask how low her white count and anc are?
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Sat Mar 29, 2008, 02:27 AM
DomesticDeeva DomesticDeeva is offline
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Thumbs up ANC and WBC

Hi Marlene,

Thank you for the suggestion. I appreciate it! Haylee's ANC has been as low as 2 and as high as 350 from Feb 14th, 2008 (her date of diagnosis) to now. It continues to fluctuate although it's been at least 90 and higher from March 10th to now. Her WBC has been as low as 0.4 and more recently has trended around 3.0 to 4.0 since March 10th.
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Shana & Matt, parents to daughter, age 11, diagnosed Very Severe Aplastic Anemia Feb 2008 (at age 10); currently undergoing immunosuppressive drug treatments.
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  #4  
Old Mon Mar 31, 2008, 11:00 AM
sandra sandra is offline
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Neupogen

Actually, I would not be too worried about Neupogen. This treatment is controversial, many AA specialists (including Dr. Shimamura) shy away from it except in cases of ongoing overwhelming infections. There are quite a bit of articles that point to increased risk of secondary malignancy (MDS or AML) with prolonged use.

From your description your daughter seems to be doing well. If I were you, I would concentrate my energy for securing enough cyclosporine. That is also an expensive drug, and she might need it for quite a while. If she does very well and platelets go to about 100k or over, you can consider tapering cyclosporine very slowly (8 - 10% every month).

Cyclosporine (Neoral) is made by Novartis, I read somewhere that the company itself has some form of assistance program, you might need to dig through their website.

All the best to Haylee,
Sandra
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  #5  
Old Wed Apr 2, 2008, 01:41 PM
Marlene Marlene is offline
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I would have to agree with Sandra on the Neupogen. John did very well living with an ANC of .7 -.9 for long time. You can pretty much fight off most things once your ANC reaches .5. You can alway add it in if the need arises.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #6  
Old Tue Jun 3, 2008, 02:43 PM
jmlmowery jmlmowery is offline
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Location: St. Louis, MO
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free neupogen

Hi-
Contact the Severe Chronic Neutropenia Registry. They are housed at the U. of Washington They also have a website and you can find it by googling their name. They have access to neupogen for needy patients. Don't hesitate to contact them.They will help.
Joan
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  #7  
Old Tue Jun 3, 2008, 02:49 PM
jmlmowery jmlmowery is offline
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Location: St. Louis, MO
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controversy over neupogen

Firstly, I want to say that my daughter has been taking low dose neupogen for over 2 years. Without it her neutrophil count is zero.
I would agree that it should be used sparingly but if the patient is going
to have lifethreatening infections without it you realy don't have much choice.
I also think many physicians are becoming aware that smaller doses will do the job with less threat to complications.
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  #8  
Old Thu Jun 5, 2008, 09:12 PM
Wendy Beltrami Wendy Beltrami is offline
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Blue Cross......... ugh

Hi To Haylee's mom-

I soooo feel your pain. We are having the same fight with Blue Cross here in Calif. Do you have a Blue Cross Case Worker? You might want to ask for one to help you. Our son got many shots of neupogen while he was in the hospital getting transfusions or in the procedure center getting transfusions and I am hoping those might be covered by our major medical. So far, they were initially declined and more info was requested from his physician. All the shots he got in the doctor's office were turned down flat.

I have not yet tried contacting Amgen directly to ask for help through their patient assistance program because for now, we have stopped the neupogen. Although he responded very well and very quickly in the past, he is currently not responding to the neupogen, even at increasingly higher doses. He is going for another BMA & B in a few weeks, and the doc wanted him to be off of neupogen for 4 weeks or so prior to the BMA. Being under treatment for neupogen at the time of a BMA & B can cause marrow to show changes that may not be truly indicative of the current status of the disease.

I have battled with Blue Cross in the past trying to get Exjade for a price that humans can afford and had no luck. I went directly to the drug company (Novartis) and hassled with them for months and months but finally was able to get it for $300+ monthly. Still expensive but at least possible. If you are declaring bankruptcy, etc. I'll bet you can qualify for the Amgen patient assistance program.
http://www.amgen.com/patients/assistance.html

There is a telephone number there too. We had to actually go so far as to send Novartis our tax return. They kept denying us over and over but I didn't give up. The Exjade Blue Cross price was over $2100 per month so I feel pretty good about getting it for $300.

Don't give up! Make sure you let them know that the cost of Neupogen is only ONE of many medical expenses when caring for your daughter. However, if her ANC is 500 or better, you might want to just let it ride since the risk may not outweigh the benefit.

Wendy B.
mom to Grant
dx 12/4/98 AA
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  #9  
Old Fri Jun 6, 2008, 12:03 PM
jmlmowery jmlmowery is offline
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Wendy

Again-should you need neupogen again, I would suggest that you, too, contact the severe chronic nuetropenia registry. Ther phone number is 206-543-9749 or you can email the director at boyard@u.washington.edu.
They are extremely helpful in assisting patients getting neupogen at no cost.
Joan
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  #10  
Old Thu Sep 18, 2008, 07:53 PM
DomesticDeeva DomesticDeeva is offline
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Exclamation Thank you

Thank you so much to everyone who has responded to this thread. Your insight and experience has been very helpful. The case worker at Sacred Heart Children's Hospital in Spokane (Karen Gordon) was a huge help to us. She was able to get the hospital's pharmacy enrolled in Amgen's (mfgr of Neupogen) Pharmacy Replacement Program. We just barely qualified financially for this program and were able to get four vials per month (now that Haylee takes weekly injections instead of daily) free of charge and Amgen replaces the vials to the pharmacy. This has been a huge blessing for us. However, keep in mind, should anyone be participating in this program, that if you are also attempting to qualify for state financial aid, Amgen will remove you from the program if you do actually qualify for any type of state aid. Also, the pharmacy will typically not inform you of this until it actually happens. This happened to us right around the time state aid disqualified our status based on my husband's small increase in income even though we were still not able to afford all of Haylee's meds and there was no change in our maxed-out pharmacy benefit. Long story short, many phone calls and emails later, we were able to get back on the Amgen financial assistance program.
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Shana & Matt, parents to daughter, age 11, diagnosed Very Severe Aplastic Anemia Feb 2008 (at age 10); currently undergoing immunosuppressive drug treatments.
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