Caught between a rock and a

General General CIDP Discussion
1

I'm tired! Battling Insurance companys, doctors offices, Infusion centers and this disease is exhausting.

I do not know what to do. The short of it all: finally got the approval from my insurance to go ahead with the IVig. Met with the infusion center and they want $5000. (my yearly max out of pocket through my policy) for my first 3 months of treatment. Then in January I will have to pay another $5000 as that begins a new calender year on my policy. That is $10,000 for 6 loading doses. I payed $ 150. in copays for a week of treatment of Ivig in 2008 as a comparison. Same insurance company.

My plight: Obviously,$10000 is major obstacle to my finances. In my search to see what my options are I found out that I have a pharmacy plan that is part of my total Healthcare package. Through that Pharmacy plan I can order the IVIg for less than $300 per month for the 170 grams I am rx'ed .

The rub: finding a infusion center or Home care service that will accept another Pharmacy providing the IVig. My approved Infusion center will not, as they informed me that they are dispensing pharmacy and will only use drugs that are purchased through them.

I also have found out that the if I purchase the IVig through the pharmacy program, that it has a separate approval process, so I will need another approval. To have it infused I would have to go through Medical side of my policy, and that would require its own separate approval process.

My Dx office is like just pay, you do not want to go through the waiting time for the approvals ( in reality it is more of she does not want to have to do all of the administrative work that this will require, shes not the one having to come up with $10,000)

I have requested a case worker through my company's benefits manager. I am waiting to here back as she did not have answers when I spoke with her as to how to proceed.

I think I need a benefits coordinator to navigate all of this, it is way over my head.

Meanwhile the clock ticks and my condition suffers.

Any one have any suggestions?

Thanks

Charles

2

I got on SSI Disability, Medicare and Medicaid. That's what saved me. It sucked I had to quit working and my wife had to give up her career to qualify, but as we all know IVIG is EXPENSIVE. I get 14 IVIG infusions every month and without Medicare/Medicaid there is no way I could have paid for that. Maybe apply for those services if you haven't already. Good luck!

3

Have you tried solumedrol? IVIG did not work for me, but solumedrol did, pretty much anyway. Its vastly cheaper. Might be worth trying just for the price???

The second thing I recommend is getting old enough to retire and then getting medicaid. Let me tell you everybody, its wonderful! ANyone opposed to medicaid (or social security) IS NUTS!

Carl

4

This may help with money issues. The federal government restitution from negative reactions from “Health” injections. Call 1-888-■■■■■■■■ (toll free )for specific details excellent Lawyers -personal -confidential and very supportive.
Maglio christopher and Toale. (Lawyers .)

5

Your specialty pharmacy should have a contract with infusion nurses that a certified for ivig. Blue shield had infusion nurses that traveled to me when my insurance was primary. Social security disability eventually took over and Medicare became primary and I paid for a suplimental part d . In this case once I have met my suplimental deductables I have no out of pocket expenses. I did have to go to a hospital out patient infusion center. Because the medication is givin through I v the nursing staff is charged through the medication side.

Contact a local hospital that does infusions and speake to there staff.

6

Hi Charles,

Speaking as someone who has benefitted from early intervention of IVIG,it's crucial for your revovery your body gets a good soaking of the stuff as soon as possible.Your medics should just stick it in and you should not need to worry about money.You think I'm crazy,No,I just happen to live in the UK where none of this nonsence happens.All it does is creates stress which makes any illness worse.

So,Protest!

Set up a petition.Write to POTUS and to all your POTUS candidates.Ask them the same question.They work for you.

I would give them all a call.

Step 1-Find a campaign manager.

Step 2-contact Willie Nelson and Tommy Chong.

Step 3-stay medicated and listen to Woody Guthrie.

Good luck,

Peter

Good luck

7

I can't give you any specific advice because I live in Belgium, so our system is very different.But I do wonder if you can't get a GP (or a nurse practitioner) who is approved by your insurance to administer the IVIG to you. I don't yet qualify for IVIG in Belgium ( you essentially have to be wheelchair bound to qualify) but it's not like having surgery, so I don't know what the big deal would be. Of course the center wants to have the profit from the Rx too, but they're in health care, FFS, and they are supposed to be caring for you which includes making sure you don't go bankrupt just trying to stay mobile. You could always see if your insurance has an ombudsperson who can mediate with the infusion center so they'll accept you with an Rx obtained elsewhere. I'm sorry you have to go through this and I hope that if my suggestions aren't helpful that you at least get this sorted very soon so you can start your treatment. All the best to you.

8

I cannot offer any support, only sympathy. I live in England and have IVig every 12 weeks. I now appreciate our National Health system!! I hope you get sorted. I have been having the treatment for 2 years and my symptoms have improved. Good luck. I am sure something positive will turn up. Barb

9

Hang in there Charles. We're all pulling for you. In my experience, medical marijuana (cannabis) has been very effective in managing the pain of my CIDP. The syptoms don't go away, but they are much less of a problem. If you don't live in a state where medical marijuana is legal, well, there are ways. The prohibition of cannabis has made it widely available in the cash economy. If the AMA, Big Pharma, and your insurance company are your problems, you still have lots of friends who want to help you.

10

Thanks for the replies. Good information and I appreciate the kind thoughts. A little more background about me, I just turned 60, so my retirement benefits are not available as of yet. I am still working full time, and I don't think that Cidp has diminished my health to the point that I could receive disability. However, the weakness and fatigue in my legs is much worse than I have experienced in the past. Not much pain, mostly aching in my ankles, knees and hips,and balance issues.

My case manager is calling to confirm that my Nuero will approve my infusions being done at home. Then check which home infusion agencies are in network, and will accept drugs from my pharmacy plan. Lots of moving parts to coordinate to get this done. Not sure how long all of this could take, as nothing happens quickly.

I will try to get an appointment with my Neuro to review options. If I can get an appointment.

Thanks again

Charles

11

Hi Charles. I have same insurance issues. I have to pay 5000 in January each year. My out of pox maximum is 5000 as well. If you find any other ways around it let me know. I have 2 young kids. I had a great job but now on disability and I’m in my 40s. Trying not to have things seem different foru kids sake financially. So it is challenging!! Take care!!! Joanne.

12

Health care is a human right.You guys are having your fundamental rights breached.

13


Joanne, I am sorry to hear you are in the same mess. I had decided to do whatever needed to get the $5000 , but then I found out that would only cover my first 3 months,and another $5000 would be due in January. Knowing that I do have the pharmacy plan available, i wanted to at least explore the option. I had know ideal what an ordeal it would be to go this route.

I told my wife that I would give it a week to see if I could get any answers, or at least feel like it could be done in a timely manner. If not I will spend my energy on coming up with the $10K. It makes me so mad that if my Insurance company had not dragged its feet, and made me jump through hoops, my treatment could have been started in july, and it would have been in 1 calender year.


joanne said:

Hi Charles. I have same insurance issues. I have to pay 5000 in January each year. My out of pox maximum is 5000 as well. If you find any other ways around it let me know. I have 2 young kids. I had a great job but now on disability and I'm in my 40s. Trying not to have things seem different foru kids sake financially. So it is challenging!! Take care!!! Joanne.
14

Dear Charles,

Many pharmacies have special "programs" for people who cannot afford to pay the exorbitant prices they charge. For example, I had help with paying for Botox before I ended up with better insurance. I have another neuro-muscular disorder called Dystonia that requires Botox shots in my back and neck. At one of the support group meetings, someone from Allergen, who makes Botox, spoke to the group about contacting them if we could not afford to pay for the Botox. If you could get the name of the pharmaceutical companies who make some of the IVIG, it would be worth a try to see if they have a program to help you. Just an idea.

Jan

15

I thought if you were on SS disability you went on medicare after a year



joanne said:

Hi Charles. I have same insurance issues. I have to pay 5000 in January each year. My out of pox maximum is 5000 as well. If you find any other ways around it let me know. I have 2 young kids. I had a great job but now on disability and I'm in my 40s. Trying not to have things seem different foru kids sake financially. So it is challenging!! Take care!!! Joanne.
16

Charles, will your neuro approve home infusion? That is what I am getting, and it is less than half the price of getting it done at a facility. I sooooo understand in being in that tangled web of the insurance company. I had too go through 2 denials. I told the insurance company that they are making me sicker than what I already am. They truly tested my patience. I feel blessed that I found a neuro that told me he was 'taking it home", and that he did. Within in a month I had my schedule for my load in doses.

17

Also Charles, the home infusion company I am using has a financial assistance program that you can talk things over with. Yes, I had to have approval for the treatment itself, then another approval for the medicine.

I would certainly inquire about home infusion. To me, it's better than having to go a facility. You are in the comfort of your own home, and the price is much better. The nurses they have sent have been very, very thorough, not to mention very experienced. Plus, if you are having a bad day, you are at home and don't have to worry about getting home.

Please, tell yourself you are bigger than they are, and you deserve this to yourself. The more you can be your own advocate, the better off you are. I have learned that over the last 19 months.

18

Sorry for not being more timely in responding, but it has been a roller coaster ride. As of today , I am finally scheduled to receive my first loading dose starting next thursday. I received a call yesterday afternoon, that Caremark and Coram healthcare have approved my infusions. I will have my first infusion at my Neuro's office, and the next 4 doses at my home. This will be at a fraction of the cost that I was going to have to pay to have it done at the infusion center. The difference is this will be billed through my pharmacy plan instead of the medical plan of my insurance. What a blessing.

I have learned that you really have to advocate for yourself, answers often depend on you asking the right question, to the right person. Not everyone has your best interest in mind. I don't think it is malicious , they just want you to go the way of least resistance, which ultimately can mean at a much higher cost.

Thanks for the kind thoughts and support, I will update once I begin the infusions.

Charles

19

Joanne, prior to finding out that my pharmacy plan would cover my Ivig, i found that Gamunex-C has a Co-pay assist program. This was one of the brands my medical plan had approved. They will pay up to $2500 per rolling calender year towards your Ivig. These guys are so nice and helpful,and it is easy to enroll. If that brand is an option for you, it will cut your max out of pocket in half. Just goggle Ganunex-C copay assist program and it will have the info you need.

Hope this helps.

Charles

joanne said:

Hi Charles. I have same insurance issues. I have to pay 5000 in January each year. My out of pox maximum is 5000 as well. If you find any other ways around it let me know. I have 2 young kids. I had a great job but now on disability and I'm in my 40s. Trying not to have things seem different foru kids sake financially. So it is challenging!! Take care!!! Joanne.