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Navigating the health insurance gauntlet
G was misdiagnosed with and treated for myasthenia gravis since last year. Just got the bulbar-onset ALS diagnosis. We are devastated, and so busy with non-stop appointments. Trying to catch up. A parallel universe we were not expecting. Thanks for inviting us into the club. We’ve been on a supposed gold-level health insurance plan through the ACA marketplace, but they are fighting the radicava treatment. He’s on riluzole, atropine, a bunch of supplements, uses the bi-pap machine at night, and the cough-assistant 2x day. We are grateful for all the insight you all are providing! And the work to get ALS immediate attention by social security and medicare. Because he hasn’t been employed/paying into medicare for a while, he doesn’t qualify for SSDI. So, not sure how the medicare support works, and if they allow for radicava, etc., without barriers. Also, do you know if we have to start the whole co-pay thing all over again for the year, or since we’ve met our out of pocket deductibles for the year, should we stick with the current plan and start with medicare in January? We have a call with the social security folks scheduled for next week. Any insight before that conversation would be quite helpful. Thank you all, ~L
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7 Replies
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We are happy you found us and that you are finding helpful answers to your questions. As for your question about Medicare… I suggest you locate a Medicare specialist (Google it) and have a meeting with them to get all the facts. Everyone’s situation is different, so rather than asking for a public opinion on this issue, it’s better to consult with a specialist.
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Just so you are aware as I have been down this road with my wife, medicare will not pay for Radicava ORS. I am pretty sure they will pay for the infused version but then you would have to go to an infusion center every day for a couple of weeks every month or pay for a nurse to come to the house every day. We were paying for private health insurance for a year or so just for this medication and relyrvrio but my wife is going to go onto a medicare advantage plan and just give these two medications up as there is absolutely no proof of their helpfulness. I hope this helps a bit.
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Yes to contacting an Insurance Navigator. So sorry about the misdiagnosis. My husband became eligible for Medicare turning 65 Jan 2023. He did not yet have a diagnosis. We chose a supplement (Blue cross Blue Shield)and a prescription drug program. Everything was covered. Also the high co-pays were covered through another source that we applied for, but the Radicava Navigator should help with that, I can’t remember what it’s called but it was a $15,000 grant. After diagnosis in March, he went on Rilutek, then Radicava ORS, then Relyvrio. It’s true that the details of these drugs say that maybes of them will extend a person’s life by 3-4 months. So that’s a factor to consider. My husband had his first symptom in July 2022 and passed on Dec. 8, 2023.
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LandG, I am so very sorry to hear of G’s diagnosis. I am caring from my husband who also has bulbar onsent ALS and was diagnosed in April of this year and it is progressing very aggressively. Faster than we were prepared for. I offer a few suggestion of things that worked for us and may be helpful in your situation. If you haven’t already done so, be sure to get in touch with your local ALS association as they should assign someone to work with you to help navigate care issues. The ALS Association also partners with the Patient Advocate Foundation, (PAF) a free service that helps people with ALS, their families, and caregivers. They can help with: Disability benefits eligibility and enrollment and Insurance coverage and financial burdens. Those with ALS are able to apply for SSDI, requesting a “compassionate allowance” and are fast tracked onto SSDI & Medicare, which may negate the number of years worked issue, but I would check in with the Patient Advocvcate Foundation to see how they may be able to help. Also, the ALS Foundation has “Loaner Closets” with medical equipment, and communication devices that insurance may not cover. As for the medication, also check with the ALS Association as they also have grants that can help to cover the costs of meds. Not sure how frequently the grants are given. With regard to the BiPAP machine, check with your pulmonogist (or get an appointment with one) as my husband was intially ordered a BiPAP machine and his pulmonlogist rewrote that order and placed him on an intermittant ventilator that helps to clear his lungs from CO2, the BiPAP machine, from my understanding, is not equipped to do so. My husband recently went on SSDI and his application was approved almost next day and we just worked with the PAF to walk through medicare advantage plans for him. As you may be aware, “plain” Medicare does not have a drug plan or vision or dental plans. Also check with Team Gleason who may be able to assist with medical equipment and wheelchairs, it needed. Will keep you both in my prayers. ~G
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Thank you all, this is so helpful. I very much appreciate your sharing and experience. xo
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Hello again, here’s an update:
Great news! Although it took about a month of frustration, phone calls, and back and forth, G is now on Radicava, having taken his second dose this morning. Hoorah! We cross our fingers in the hopes that this will help preserve some quality of life.
It was an important lesson for us and has helped us make our next big decision. We are not going to wait for another trip through the health insurance gauntlet to get a Mobius Wheelchair. (He does not qualify for Medicare or SSDI.) We know that will take precious time and create more anxiety. Next week, we’ll test drive a unit in their NH headquarters (we are only a couple hours away) and hopefully put an order in, paying – gasp! – cash. If this unit does what we think it will, we can avoid a ton of very costly, very disruptive, very annoying upgrades to the house. We think this will improve quality of life for all of us.
So, our next question to you all is for feedback on this decision. Do you have experience with this product? Any insight, pointers, regrets?
Feeling a bit empowered,
~L
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I have Humana Medicare Advantage Plan and Radicava is part of their formulary. The copay is very high but there are grants out there that can help.
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