Medicaid questions

[jenny83]

Hi all. I am looking at the possibility of having to switch to Medicaid for the first time (my already very high insurance premium is going up 50% next year!), and I have a few questions. If you have any experience with these issues, I'd love your input. I'm not sure where to find the answers to these questions, and I figured some people on this board may be in the same situation.

1. If I'm on Medicaid, will I be able to continue to see my CF doctor that is in a different state? I currently live in PA, and go to Hopkins, which is in MD. There are CF centers in PA, but I am very comfortable with my doctors at Hopkins and would hate to switch. Also, I am in the process of moving to SC, and once there, would like to go to the CF center in at UNC, which is where I went for my care for the first 30 years of my life- so either way I'd reside in a different state from the doctor I'd like to see.

2. I read somewhere that if you are on Medicaid, you have to do IVs inpatient, and can't do home IVs. I have no idea where I read this, so I'm hoping I misunderstood this one. I've been doing home IVs for most of my life and as a single mom, it would be quite difficult for me to do 2-3 weeks inpatient.

3. Are folks with Medicaid getting Orkambi ok at this point? I know it was difficult when it first came out, but I'm wondering if they've resolved those issues. I've been on it a year and I feel like it's really beneficial to me, so of course I don't want to stop it!

I am very lucky to have parents who have paid for my insurance since I got divorced a few years ago, but the costs are getting so high (premium is $614 a month for 2017) that it is becoming a struggle. I only worked very briefly after college, and therefore am not eligible for SSDI/Medicare. And because I don't work, I can't get a subsidy for one of the ACA plans- it's either full price or Medicaid. I do qualify for SSI, but haven't started that process yet- but from what I understand Medicare is only for those with SSDI. Thank you for any advice!

 

[triples15]

Hi Jenny! So sorry to hear you are having to worry about all of this. :/

I don't think I can be of a ton of help here because I have never personally been on Medicaid, but I'll tell you what I know.

As far as the not paying for home IVs.,.. you did, in fact, read that somewhere but it was in reference to MedicARE (which I do have as a secondary). Medicare does not cover home infusion, which is beyond ridiculous. I went through a brief period where Medicare was my primary and just hoped and prayed I wouldn't need IVs. I got lucky. Anyway, I have never heard of the same issue with Medicaid so I think you are fine there.

As far as seeing and out-of-state doctor, ugh, they'll probably give you problems. My guess (and hope) would be that you could apply for some kind of waiver or exemption to get it approved. Does your center have a decent social worker? I'd ask her what she has seen in the way of Medicaid patients traveling from out-of-state. She might be familiar with waivers etc. and could potentially give you some advice.

Re: Orkambi.. I believe most (or all) states are paying for now as long as it is FDA approved for your mutations. They won't cover off-label use. I had a friend who's daughter was recently (a few months ago) prescribed Orkambi and they have Nebraska Medicaid. She said there were some hoops to jump through and it took about a week or so, but Medicaid IS paying it. So I think even if they would initially try to deny it you'd have to do a little wrangling and it would be covered.

Lastly, as I'm sure you know, Medicaid is a state ran program so when you move you'll have to reapply in SC and different rules may apply regarding seeing an out-of -state doc etc. So it might make sense to check with them as well.

Again, I'm so sorry you have to worry about this and I hope I helped at all. I hope you get replies from people with more personally experience.

Best of luck to you and take care!

Autumn

PS. Yes, you have it right, Medicare is for those with SSDI, and Medicaid is for those with SSI.