Disappointed; ins. denied Gilenya

[readingteacher]

I was excited about the prospect of starting a different DMD. My neuro suggested I try Gilenya, last fall. Had all of the lab tests done, as well as an EKG and an eye exam. Too many infections during the fall semester made us hold off. My neuro even had me have blood work done to check out my immune system.

Finally, the decision was made to go ahead and try to get me in the process of starting Gilenya. All that was needed was for my insurance to approve it. From what I understood, it was about the same cost as Copaxone, so I didn't expect any problems. Silly me!

At the same time that they were giving me a hard tim about switching to a twice daily dose of Provigil (had also decided toing fwer go back on that), I was excited to get a welcome letter and package from Novartis about Gilenya. It said I was still in the insurance approval stage.

I was surprised, after that to receive a letter from my insurance company denying it. My neuro's office told me they would appeal. The appeal was also denied. Their reasons? First, they claim that I have to try 2 different injectable DMDs before being allowed to take an oral type. Why?? If it has a record of patients having fewer flares, than injectiond

[MarkLavelle]

First, they claim that I have to try 2 different injectable DMDs before being allowed to take an oral type. Why??

That's not a claim -- it's their requirement. Unfortunately, insurance companies alone decide which meds they will pay for, and don't have to justify their decisions to anyone.

The insurance companies don't pay 'list price' for drugs, so I would guess that yours gets the older injectables for significantly less than Gilenya....

[polopuppy]

I would suggest that you now write an appeal. The physician appeals are not often very effective. i am on IVIG and it was being covered by my HMO without any issue. My employer dropped our HMO and went to a self-funded PPO plan. The PPO immediately refused to pay for the IVIG.

My neuro submitted several appeals but they were not approved. I followed the appeals process and became a thorn in the insurance company's side. After three months, they approved my appeal. Here is a link from the IVIG magazine callled IG Living which has a great article on how to write an effective appeal.

It is a great deal of work but worth it. Most times, it gets approved. Good luck.

http://www.igliving.com/Assets/IGL/F...Full-Issue.pdf

[MSer102]

That's not a claim -- it's their requirement. Unfortunately, insurance companies alone decide which meds they will pay for, and don't have to justify their decisions to anyone.

The insurance companies don't pay 'list price' for drugs, so I would guess that yours gets the older injectables for significantly less than Gilenya....

Not only do the injectible medicines probably cost less for your insurance company, they don't have a lot of the other costs that Gilenya has. So there is no way that Gilenya costs the same as Copaxone.

With Gilenya your insurance company has to pay for an EKG and maybe a chicken pox virus blood test. They have to pay for an eye exam. They have to pay a doctor's office to monitor you all day for your first dose. None of the injectible medicines have those extra costs. If you develop heart problems or breathing problems there can be expensive specialist care for those. If you develop macular edema there will be expensive specialist care for that. Those things aren't a risk for the injectible medicines.

Your insurance doesn't care that Gilenya is somewhat more effective in reducing flares for MS than the injectible DMD's are. Their job is to cover MS care at the lowest overall cost and the injectibles are cheaper all around. So if your doctor's appeal was based only on Gilenya being more effective then I can see why your appeal was denied.

Their requirement is that you prove to them that the injectibles aren't an effective treatment for you. So it sounds like your appeal would have to show specifically that Copaxone wasn't working for you, not just that your doctor thinks Gilenya would be better. And your insurance requires that you do that for another injectible. So unless you can prove in advance that you can't take an interferon you'll have to go through it just to meet their requirement. (That sucks.)

As a side note, if your already having a lot of infections, Gilenya might make that even worse, so that's another expense for you and your insurance that Gilenya can add.

Even if you tell your insurance that they've already paid for an EKG and an eye exam that still doesn't reduce their potential costs of treating serious side effects from Gilenya that the interferons rarely have. I can't think of anything you or your doctor can say in an appeal that overrules their requirement for another injectible.

Have you checked with Gilenya to see if you qualify for their assistance program?

[polopuppy]

Ask your insurance company to provide you with the policy stating that a patient must fail 2 injectable medications. You want the written policy in document form with the date that the document was created. They could just be making this up to suit your situation.

The trouble with insurance companies and these expensive drugs, is that they will tell you whatever they think will discourage you from pursuing things further. You will hear a different story every time you call and each story will be a bunch of hogwash.

Gilenya may have some monitoring tests that need to be done but that is true for interferons too. Some of the tests required for Gilenya are inexpensive. An EKG is less than a $100 and the test for varicella is only required if a patient has not had chicken pox or had the vaccine.

I know a couple of people that are taking Gilenya. They were given their first dose, after an EKG and sent back out to the waiting room. A nurse called them in every hour to take their HR and BP. After six hours, they had a second EKG and were sent home. That was it, no special or expensive monitoring.

I agree that your infection issue could be a problem with Gilenya but it could be on an interferon also. You did not say why you are going off of Copaxone. Is it by choice, increased lesions, neuro's suggestion?

If you are able to make a good case to the insurance company for the Gilenya, you should try. If you have been having increased relapses requiring IV steroids, hospitalizations, frequent MD appointments, etc you need to point that out. You can make the point that you will save them money if your MS stabilizes on the Gilenya.

This was the tactic I used to fight my appeal and it worked. Good luck with whatever you decide.

[readingteacher]

That's not a claim -- it's their requirement. Unfortunately, insurance companies alone decide which meds they will pay for, and don't have to justify their decisions to anyone.

The insurance companies don't pay 'list price' for drugs, so I would guess that yours gets the older injectables for significantly less than Gilenya....

Yeah, I definitely used the wrong wording (they claim), but I was upset at the time. After I had been through a few flares that were a bit too close together; my neuro thought it was time to consider an alternative treatment. That was after an exacerbation last July.

I started the process of blood work, EKG, and eye exam last fall (October). Admittedly, I became concerned about having frequent infections, later in the fall, and we held off pursuing Gilenya until I had a chance to recover. My neuro even had my immune system checked (Immunoglobulin ?). It was not low enough, he said, to be of concern.

After being turned down twice by my insurance company, I gave up. I have agreed to try Betaseron. The first of it, a "complimentary" package via my neuro's request, arrives on Tuesday. Actually, it would be great if that works well for me. I really don't want to have to go through any more exacerbations just so I can get on Gilenya. I just want to have a year or more of better health than I have had in the past few years. I want to be able to function within the limitations I have; not get worse or have more exacerbations that put me in the hospital or keep me from being able to do anything.

Praying that the next few months will be better; and that I will be better able to function as a wife and mother for at least a year or more.

Sherry

[tspaulding]

Not only do the injectible medicines probably cost less for your insurance company, they don't have a lot of the other costs that Gilenya has. So there is no way that Gilenya costs the same as Copaxone.

With Gilenya your insurance company has to pay for an EKG and maybe a chicken pox virus blood test. They have to pay for an eye exam. They have to pay a doctor's office to monitor you all day for your first dose. None of the injectible medicines have those extra costs. If you develop heart problems or breathing problems there can be expensive specialist care for those. If you develop macular edema there will be expensive specialist care for that. Those things aren't a risk for the injectible medicines.

Your insurance doesn't care that Gilenya is somewhat more effective in reducing flares for MS than the injectible DMD's are. Their job is to cover MS care at the lowest overall cost and the injectibles are cheaper all around. So if your doctor's appeal was based only on Gilenya being more effective then I can see why your appeal was denied.

Their requirement is that you prove to them that the injectibles aren't an effective treatment for you. So it sounds like your appeal would have to show specifically that Copaxone wasn't working for you, not just that your doctor thinks Gilenya would be better. And your insurance requires that you do that for another injectible. So unless you can prove in advance that you can't take an interferon you'll have to go through it just to meet their requirement. (That sucks.)

As a side note, if your already having a lot of infections, Gilenya might make that even worse, so that's another expense for you and your insurance that Gilenya can add.

Even if you tell your insurance that they've already paid for an EKG and an eye exam that still doesn't reduce their potential costs of treating serious side effects from Gilenya that the interferons rarely have. I can't think of anything you or your doctor can say in an appeal that overrules their requirement for another injectible.

Have you checked with Gilenya to see if you qualify for their assistance program?

I have been on Gilenya for over a year and I am under my hubby BC/BS plan here in VT, they covered the med no problem. Insurance did not cover the eye test for macular edema, my eye doctor tried. I paid for that and was glad to know my eyes are healthy. Gilenya has been paying my copay for over a year not sure for how much longer. Tasha RRMS dx 1995

[onlyairfare]

Novartis offered to reimburse me for the cost of my eye exam. Since it was time for my routine exam anyway, I had only a small co-pay and the rest of the bill was paid by my insurer.

Most states require the insurance company/your company's HR department to provide you with a "benefit plan design" and then further policy details about a denial of coverage if you request them. Most of the time, that includes a copy of a policy requiring failure of two injectables before they would cover Gilenya. So I'd agree with the poster above, ask to see the policy.

If you have any doubts, check with your state insurance commissioner to see if this requirement/restriction is allowed. Insurance companies cannot just make up any rule they want - they have to obey the laws and regulations to be licensed to sell insurance in a given state.

Meanwhile, good luck with the beta, and here's hoping you don't need to switch to yet another DMD!

[readingteacher]

Tasha,
I am also under my husband's insurance (also BC/BS), here in central Pa. Did you start out with Gilenya, or were you on an injection before?