Fighting Anthem over monthly infusions
March 8, 2023 11:05 AM Subscribe
My wife receives monthly infusions for MS. She is now on long-term (non-SSDI) disability and as a result is on my health insurance. This has resulted in an undesirable change in her infusion provider and we're trying to get back to our original provider.
My wife's MS is held in check by monthly infusions of Tysabri, a drug which is kind of the gold standard for MS treatment which works wonderfully for her. Nonetheless, she's had to go on long-term disability. There is a law firm working to get her onto SSDI, which will obviously change the answer to any insurance question once she's Medicare-eligible, but for the present and near future, she's on my insurance. Her previous insurance, through her workplace, was Aetna. Mine is Anthem/BCBS.
I work for a major campus of a state university, which, among other things, has an extensive and well-regarded medical program. Most of my wife's medical care was already through our university's associated medical care programs (her PCP is at University Primary Care; her MS specialist is at the University Hospital, etc.). Under Aetna, her infusions were provided through the university's hospital outpatient care center (which has an infusion-specific clinic. With all this in mind, when I brought her onto my insurance, I elected to change to a two-tiered EPO plan: one where she gets extremely good coverage from University health providers ("Tier 1" in their plan language), and pretty good coverage from Anthem's broader network ("Tier 2").
Shortly after we put her on my insurance and the paperwork was reprocessed for her new insurance, the MS clinic received instructions to transfer her infusion care from the University's outpatient center to a dedicated infusion center (specifically Option Care, which I am given to understand is a large national infusion-center chain). My original concerns were financial: if they're forcing us to a Tier 2 provider, with lesser coverage, when a Tier 1 provider exists, the difference should be on them. I started the process to apply for a network exemption gap, but that stalled out because when I started it, she wasn't even a client of Option Care; I'll be circling back to that if we receive a bill indicating more than the Tier 1 flat copay, but for the time being the financial aspact is secondary. However, as part of working up this appeal I learned that Option Care is the only Anthem-approved infusion center within 70 miles.
But the real issue at this point is that, to put it bluntly, Option Care is simply not as good at this as the University Outpatient Center. She documented particular issues of medicine administration (gravity drip vs. UOC's electronically moderated feed pressure; more painful insertion and less comfortable placement of the needle; being left alone during the process instead of having a staff monitor), and a few cleanliness concerns (there was blood, some of it hers, which was on infusion apparatus and was not cleaned immediately). There's also lack of confidence on the part of her support team: the MS clinic, with the change over, has instructed prednisone infusions as well as a safeguard against a bad reaction. She hates being on prednisone and has never had a bad reaction to Tysabri, so this change seems to indicate that the clinic's caution is born of distrust that Option Care will administer the Tysabri correctly. So there are a lot of reasons she does not want Option Care. She talked to the MS clinic and they told her that they've tried to get insurance companies to move their patients away from Option Care with no success.
She's very unhappy about all this. In the big picture, short-term pain and discomfort once a month is better than not getting her drugs at all and this is the best spin I can put on it to her but even though this is not a hugely bad situation it is another element of a large range of pains and inconveniences and unpleasantnesses she has to go through. Chances to actually take something off the list of pains and troubles she has are rare and it would be good to have a win here. Is there any hope for us?
My wife's MS is held in check by monthly infusions of Tysabri, a drug which is kind of the gold standard for MS treatment which works wonderfully for her. Nonetheless, she's had to go on long-term disability. There is a law firm working to get her onto SSDI, which will obviously change the answer to any insurance question once she's Medicare-eligible, but for the present and near future, she's on my insurance. Her previous insurance, through her workplace, was Aetna. Mine is Anthem/BCBS.
I work for a major campus of a state university, which, among other things, has an extensive and well-regarded medical program. Most of my wife's medical care was already through our university's associated medical care programs (her PCP is at University Primary Care; her MS specialist is at the University Hospital, etc.). Under Aetna, her infusions were provided through the university's hospital outpatient care center (which has an infusion-specific clinic. With all this in mind, when I brought her onto my insurance, I elected to change to a two-tiered EPO plan: one where she gets extremely good coverage from University health providers ("Tier 1" in their plan language), and pretty good coverage from Anthem's broader network ("Tier 2").
Shortly after we put her on my insurance and the paperwork was reprocessed for her new insurance, the MS clinic received instructions to transfer her infusion care from the University's outpatient center to a dedicated infusion center (specifically Option Care, which I am given to understand is a large national infusion-center chain). My original concerns were financial: if they're forcing us to a Tier 2 provider, with lesser coverage, when a Tier 1 provider exists, the difference should be on them. I started the process to apply for a network exemption gap, but that stalled out because when I started it, she wasn't even a client of Option Care; I'll be circling back to that if we receive a bill indicating more than the Tier 1 flat copay, but for the time being the financial aspact is secondary. However, as part of working up this appeal I learned that Option Care is the only Anthem-approved infusion center within 70 miles.
But the real issue at this point is that, to put it bluntly, Option Care is simply not as good at this as the University Outpatient Center. She documented particular issues of medicine administration (gravity drip vs. UOC's electronically moderated feed pressure; more painful insertion and less comfortable placement of the needle; being left alone during the process instead of having a staff monitor), and a few cleanliness concerns (there was blood, some of it hers, which was on infusion apparatus and was not cleaned immediately). There's also lack of confidence on the part of her support team: the MS clinic, with the change over, has instructed prednisone infusions as well as a safeguard against a bad reaction. She hates being on prednisone and has never had a bad reaction to Tysabri, so this change seems to indicate that the clinic's caution is born of distrust that Option Care will administer the Tysabri correctly. So there are a lot of reasons she does not want Option Care. She talked to the MS clinic and they told her that they've tried to get insurance companies to move their patients away from Option Care with no success.
She's very unhappy about all this. In the big picture, short-term pain and discomfort once a month is better than not getting her drugs at all and this is the best spin I can put on it to her but even though this is not a hugely bad situation it is another element of a large range of pains and inconveniences and unpleasantnesses she has to go through. Chances to actually take something off the list of pains and troubles she has are rare and it would be good to have a win here. Is there any hope for us?
Would a letter from PCP help here? Or does this have to be appealed through whatever process they have?
posted by kschang at 12:30 PM on March 8, 2023
posted by kschang at 12:30 PM on March 8, 2023
Apologies for somewhat of a sideways answer: I receive treatments for something that some insurance companies deny. I belong to some facebook groups of other patients. These groups are a great source of appeal letters that others have written to get insurance to change course. Some people have documented that some insurance companies will deny-deny-deny until 3rd or 4th appeal. Keep at it!
So my answer is to continue appealing; look for groups of other patients who are getting those treatments (facebook, reddit, etc.) and see if you can get advice there; if at all possible, get her physician to weigh in on the appeal with tangible benefits of your preferred location.
Lastly, is there any recourse with the maker of Tysabri? It's in their best interest that your wife is happy with their product. They may have a patient liaison who can help with this - they may even be able to help with the appeal process. (For the treatment I'm on, I have a direct contact at the drug company who helps ensure that everything goes smoothly for me.)
posted by hydra77 at 12:30 PM on March 8, 2023 [4 favorites]
So my answer is to continue appealing; look for groups of other patients who are getting those treatments (facebook, reddit, etc.) and see if you can get advice there; if at all possible, get her physician to weigh in on the appeal with tangible benefits of your preferred location.
Lastly, is there any recourse with the maker of Tysabri? It's in their best interest that your wife is happy with their product. They may have a patient liaison who can help with this - they may even be able to help with the appeal process. (For the treatment I'm on, I have a direct contact at the drug company who helps ensure that everything goes smoothly for me.)
posted by hydra77 at 12:30 PM on March 8, 2023 [4 favorites]
Check your insurance for "continuation of care" benefits. Example from a CA university: Anthem Blue Cross Continuity of Care/Transition of Care Request Form
posted by Iris Gambol at 1:23 PM on March 8, 2023
posted by Iris Gambol at 1:23 PM on March 8, 2023
FWIW, about 10 years ago I had an issue with Anthem refusing to cover my wife's blood test strips. (She is #t1d). They only covered one brand (where they were getting a kickback most likely) and that brand was not the brand that worked with the meter that talked to her insulin pump. They were dismissive of all of our appeals, right up until I filed a complaint with the state insurance commissioner. Two weeks after that, I got a call from the Commissioner's office telling me they would be covering the test strips.
So insurance commissioner may be a route you can go.
posted by COD at 2:33 PM on March 8, 2023 [7 favorites]
So insurance commissioner may be a route you can go.
posted by COD at 2:33 PM on March 8, 2023 [7 favorites]
Aside from the above, an immediate action is that you can report health care facilities for violations in standards of care. You can anonymously report infection control issues and so forth. The reports should not be disclosed. Here the first place would be the department of public health. Your state may differ. It might get some improvements in standards of care. It might not. However, It is a thing you can do.
posted by AlexiaSky at 3:12 PM on March 8, 2023 [2 favorites]
posted by AlexiaSky at 3:12 PM on March 8, 2023 [2 favorites]
Neurologist here, though not an MS specialist. As soon as you said Anthem, my heart sank. They are THE WORST. (I mean, all insurance companies are bullshit about stuff like this. But Anthem, specifically, is THE WORST. I will spare you the stories, but seriously. THE. WORST.)
It sounds like this has been a recurring issue in your area (to the point where the MS clinic has tried and failed for other patients). There is no "next step" if the peer to peer fails. Biogen, makers of Tysabri, do have a patient assistance program, but generally that's for uninsured or underinsured. Still, could be worth a try.
there was blood, some of it hers, which was on infusion apparatus
Oh, hell no.
posted by basalganglia at 3:33 PM on March 8, 2023 [6 favorites]
It sounds like this has been a recurring issue in your area (to the point where the MS clinic has tried and failed for other patients). There is no "next step" if the peer to peer fails. Biogen, makers of Tysabri, do have a patient assistance program, but generally that's for uninsured or underinsured. Still, could be worth a try.
there was blood, some of it hers, which was on infusion apparatus
Oh, hell no.
posted by basalganglia at 3:33 PM on March 8, 2023 [6 favorites]
I know that Anthem is leading the charge among insurance companies to get patients away from "hospital or hospital-adjacent" services when a standalone option exists locally, such as imaging centers and (unfortunately) infusion centers.
posted by kuanes at 3:41 AM on March 9, 2023
posted by kuanes at 3:41 AM on March 9, 2023
I've had success with similar issues (getting prescriptions approved) by talking to someone senior and knowledgeable in my wife's university benefits section. Maybe there's a way you can go to the hospital infusion center rather than jiffy lube and pay the difference. Maybe they'll have other ideas. I wish you and your wife the best of luck.
posted by gerygone at 12:47 PM on March 9, 2023
posted by gerygone at 12:47 PM on March 9, 2023
I work in the non-profit insurance field, mainly medicare and medicaid. With a chronic condition like MS, and on regular infusions, your wife should have a Nurse (RN) Care Manager at Anthem who can help smooth out some of the bumps in this transition. If she doesn't have one yet, she can get one by calling the member services/customer care line on the back of the membership card and specifically stating that she has a chronic autoimmune condition and is in regular treatment, and would like to speak to her care manager. If she doesn't have a name for that person, they will either give her an email address to use to reach the general Care Management team or forward her to the Care Management on-call line.
Seconding that she should be able to just decline the prednisone; my doc always ordered it with my home infusions, and this was fine for me (I actually appreciated the brief break from knee pain) but I was also able to say no to it once Covid hit and I lost all traces of willingness to be immunocompromised. It's probable that your wife's MS clinic recommended the prednisone because they knew she would receive less monitoring at the new facility; the prednisone would provide a buffer if a reaction started and wasn't immediately noticed.
Have you and your wife considered the possibility of doing these infusions in the home? Weirdly, insurance companies seem to prefer that to sending patients to facilities; it turns out to cost more to staff a facility than to ship out medications and send around a visiting nurse to administer an infusion. I'm not sure how long your wife's infusions take - mine were 4-5 hours a day, two days in a row, once every 5 weeks, and my insurance company leapt at the opportunity just send a lady to my house instead of the facility route. This is another reason to ensure that your wife talks to a care manager - they are excellent at offering this kind of alternative when it is available, and at addressing concerns about facilities when they're made aware of them.
Best of luck - infusions are generally a misery, and I completely sympathize with the desire to make everything around them as un-fussy and painless as possible!
posted by invincible summer at 2:06 PM on March 9, 2023
Seconding that she should be able to just decline the prednisone; my doc always ordered it with my home infusions, and this was fine for me (I actually appreciated the brief break from knee pain) but I was also able to say no to it once Covid hit and I lost all traces of willingness to be immunocompromised. It's probable that your wife's MS clinic recommended the prednisone because they knew she would receive less monitoring at the new facility; the prednisone would provide a buffer if a reaction started and wasn't immediately noticed.
Have you and your wife considered the possibility of doing these infusions in the home? Weirdly, insurance companies seem to prefer that to sending patients to facilities; it turns out to cost more to staff a facility than to ship out medications and send around a visiting nurse to administer an infusion. I'm not sure how long your wife's infusions take - mine were 4-5 hours a day, two days in a row, once every 5 weeks, and my insurance company leapt at the opportunity just send a lady to my house instead of the facility route. This is another reason to ensure that your wife talks to a care manager - they are excellent at offering this kind of alternative when it is available, and at addressing concerns about facilities when they're made aware of them.
Best of luck - infusions are generally a misery, and I completely sympathize with the desire to make everything around them as un-fussy and painless as possible!
posted by invincible summer at 2:06 PM on March 9, 2023
Response by poster: I have fantastic followup news, possibly of use to anyone else in a similar situation.
We recently received an actual bill associated with her Option Care visit, for upwards of $2000. I jumped onto an online chat yesterday with Anthem, armed with "what I said two months ago would happen just happened", and "here's the claim number for the two emergency-scheduled infusions at the University, for which we were charged $0, and there's the claim number for the Option Care infusion, whose EOB includes a friendly reminder that we should really have done this at a Tier 1 facility, which I tried really hard to do." The representative asked when and how Anthem communicated the change to us, and I said "never through official channels: we recieved notification from the MS clinic of what we were given to understand was an Anthem-mandated provider change." It probably helped that I put that exact assertion in the December appeal which went nowhere, which was part and parcel of my "I told Anthem this would happen over 2 months ago" position. The rep was confused by this and insisted that of course Anthem would much rather we receive infusions at a Tier 1 facility and that any request to do so should be approved. With that much in writing (well, in chat transcript, at least), I resolved to go back to the MS clinic and ask what the deal is, figuring would catch some party in a contradiction and then have leverage.
But I didn't get the chance. This morning the MS clinic called — unprompted by any direct interaction on our part with them! — to tell us they'd gotten approval for infusions at the university hospital. All that remains at this point is to figure out how to contest this one bill, which is kind of a thing apart: at the end of the day, she did receive service at a Tier-2 facility and without a pre-existing network exemption gap, but I'm reasonably confident about appealing to some party larger than us to make that one right.
If anyone else finds themselves in a similar situation, memail me for text of my appeals, chat transcripts, etc.
posted by jackbishop at 10:17 AM on March 23, 2023 [3 favorites]
We recently received an actual bill associated with her Option Care visit, for upwards of $2000. I jumped onto an online chat yesterday with Anthem, armed with "what I said two months ago would happen just happened", and "here's the claim number for the two emergency-scheduled infusions at the University, for which we were charged $0, and there's the claim number for the Option Care infusion, whose EOB includes a friendly reminder that we should really have done this at a Tier 1 facility, which I tried really hard to do." The representative asked when and how Anthem communicated the change to us, and I said "never through official channels: we recieved notification from the MS clinic of what we were given to understand was an Anthem-mandated provider change." It probably helped that I put that exact assertion in the December appeal which went nowhere, which was part and parcel of my "I told Anthem this would happen over 2 months ago" position. The rep was confused by this and insisted that of course Anthem would much rather we receive infusions at a Tier 1 facility and that any request to do so should be approved. With that much in writing (well, in chat transcript, at least), I resolved to go back to the MS clinic and ask what the deal is, figuring would catch some party in a contradiction and then have leverage.
But I didn't get the chance. This morning the MS clinic called — unprompted by any direct interaction on our part with them! — to tell us they'd gotten approval for infusions at the university hospital. All that remains at this point is to figure out how to contest this one bill, which is kind of a thing apart: at the end of the day, she did receive service at a Tier-2 facility and without a pre-existing network exemption gap, but I'm reasonably confident about appealing to some party larger than us to make that one right.
If anyone else finds themselves in a similar situation, memail me for text of my appeals, chat transcripts, etc.
posted by jackbishop at 10:17 AM on March 23, 2023 [3 favorites]
Love how things worked out.
Remember, Anthem is a bureaucracy. When they saw the bottomline, and how unhappy you are that MS clinic transferred her, AND it didn't save them any money, they're happy to save themselves money. Making you happy is a byproduct.
posted by kschang at 6:07 PM on March 28, 2023
Remember, Anthem is a bureaucracy. When they saw the bottomline, and how unhappy you are that MS clinic transferred her, AND it didn't save them any money, they're happy to save themselves money. Making you happy is a byproduct.
posted by kschang at 6:07 PM on March 28, 2023
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If only some of the blood was hers, that's... worrying. Everything else just seems like, as you basically said, something she just has to suck up for the time being.
posted by DarlingBri at 11:22 AM on March 8, 2023 [1 favorite]