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MS and Health Insurance
Got my "unofficial" RRMS diagnosis today from my neurologist. I've had fairly manageable symptoms like paresthesia, leg/arm weakness, diplopia over the last 3 years. Some were easier to ignore than others. Some required a trip to the ER and IVSM. Multiple MRIs over the years show an increasing number of lesions, first LP revealed oligoclonal bands unique to the CSF and something about IgGs I can't recall. Tired of staring at my medical records, I guess.
The reason I say "unofficial" is because my neurologist was reluctant to enter in an official diagnosis. I am currently without health insurance and we speculated that nobody would touch me with a 10 foot pole if I claimed a pre-existing condition. I've been covered my entire life except for the last 4-5 months when I was asymptomatic and decided to relocate. Funny how that turned out. That's when I wound up in the ER (uninsured, awesome, I know) but I could barely see and I was too scared to try to wait it out.
I'm not working at the moment, I'm a student in my twenties and I'm supposed to start a nursing program out of state in 3 weeks so... in between the bouts of hysterical crying because this is the worst timing EVER, I've been trying to figure out what to do about health insurance. My neurologist and I were discussing Betaseron and gawking at the out-of-pocket cost. Luckily he was nice enough to waive the fee for my next visit, but we haven't figured out a solution for the medication. He told me to come back when I got insurance so I could get a proper diagnosis and a prescription.
Does Medicaid cover Betaseron? The last time I had Medicaid my doctors were always complaining about how they covered close to none of the prescriptions I needed (unrelated to MS). United Health One seems decent since my neurologist is in that network and the Betaseron co-pay is $65. My school doesn't offer insurance, so that's not an option. Any recommendations for NY or FL insurance? Something I could get fast? And what's the deal with insurance if I go to school in one state but come home to another?
I just really don't know what to do and I feel incredibly shady/awful for "hiding" my MS but as it stands now I can't afford to see my neurologist, I can't afford DMDs and that ER visit where 90% of my tests to rule out MS were done will bury me financially. So sad and overwhelmed right now.
The reason I say "unofficial" is because my neurologist was reluctant to enter in an official diagnosis. I am currently without health insurance and we speculated that nobody would touch me with a 10 foot pole if I claimed a pre-existing condition. I've been covered my entire life except for the last 4-5 months when I was asymptomatic and decided to relocate. Funny how that turned out. That's when I wound up in the ER (uninsured, awesome, I know) but I could barely see and I was too scared to try to wait it out.
I'm not working at the moment, I'm a student in my twenties and I'm supposed to start a nursing program out of state in 3 weeks so... in between the bouts of hysterical crying because this is the worst timing EVER, I've been trying to figure out what to do about health insurance. My neurologist and I were discussing Betaseron and gawking at the out-of-pocket cost. Luckily he was nice enough to waive the fee for my next visit, but we haven't figured out a solution for the medication. He told me to come back when I got insurance so I could get a proper diagnosis and a prescription.
Does Medicaid cover Betaseron? The last time I had Medicaid my doctors were always complaining about how they covered close to none of the prescriptions I needed (unrelated to MS). United Health One seems decent since my neurologist is in that network and the Betaseron co-pay is $65. My school doesn't offer insurance, so that's not an option. Any recommendations for NY or FL insurance? Something I could get fast? And what's the deal with insurance if I go to school in one state but come home to another?
I just really don't know what to do and I feel incredibly shady/awful for "hiding" my MS but as it stands now I can't afford to see my neurologist, I can't afford DMDs and that ER visit where 90% of my tests to rule out MS were done will bury me financially. So sad and overwhelmed right now.
Best Answer
I looked into PCIP when we lost our insurance, and couldn't get a private insurance company to touch me with a 10 foot pole. It seems like a good program and relatively inexpensive ($200 per month for a 40-something). You have to be without insurance for 6 months, and then have to get documentation from Neuro, etc (can't remember exactly). Then, I think, as long as you have that, you should have no problem when you are able to go with a corporate plan, although there may be short waiting period for pre-existing, depending on what the plan is. It definitely would have been the best option for me, but luckily hubby found a new job and it covered us right away. Most corporate plans define pre-existing condition as something that you have been treated for in the previous 90 days, so although not exactly smart, I just didn't go to the Dr. or take any meds so there wouldn't be any issues.
Side note-good luck with nursing school! I am a RN also, and love what I do, but wouldn't wish nursing school on my worst enemy! LOL!
Kristen
Side note-good luck with nursing school! I am a RN also, and love what I do, but wouldn't wish nursing school on my worst enemy! LOL!
Kristen
Thanks for sharing and a hearty congrats for being persistent. Your story will help others on this forum.
Julie
Julie
Don't know if anyone remembers me around here but I just started Betaseron today!
You may recall I was having insurance issues... as in, not having any insurance.
Thanks to everyone on this forum who helped me figure out how to get access to medication. I paid $30 for 3 months worth of injections over the phone, got a free kit, journal, sharps container, and a visit from the most lovely nurse who trained me this afternoon.
I didn't have any trouble getting the actual medicine from US Bioservices because they will ship just about anywhere (I live in FL but go to school in NY and the prescription was written by my FL neurologist), but I did have to get a prescription from a NY neurologist in order to have a nurse from Betaplus come to my apartment.
The funny thing is I'm going to school to become a nurse myself and we've just begun fiddling around with different syringes. You can't even feel the 30 gauge needle for Betaseron. I was actually shocked.
I haven't had any serious flares since the double vision in December but the tingling and numbness is back in my right leg. I chalk it up to stress which has been pretty extreme as of late. I'm just so glad to be on something after getting my diagnosis in early January. Not going to lie, it was a bit of a pain trying to maneuver the system to get access to meds without insurance and straddling two states but persistence pays off.
You may recall I was having insurance issues... as in, not having any insurance.
Thanks to everyone on this forum who helped me figure out how to get access to medication. I paid $30 for 3 months worth of injections over the phone, got a free kit, journal, sharps container, and a visit from the most lovely nurse who trained me this afternoon.
I didn't have any trouble getting the actual medicine from US Bioservices because they will ship just about anywhere (I live in FL but go to school in NY and the prescription was written by my FL neurologist), but I did have to get a prescription from a NY neurologist in order to have a nurse from Betaplus come to my apartment.
The funny thing is I'm going to school to become a nurse myself and we've just begun fiddling around with different syringes. You can't even feel the 30 gauge needle for Betaseron. I was actually shocked.
I haven't had any serious flares since the double vision in December but the tingling and numbness is back in my right leg. I chalk it up to stress which has been pretty extreme as of late. I'm just so glad to be on something after getting my diagnosis in early January. Not going to lie, it was a bit of a pain trying to maneuver the system to get access to meds without insurance and straddling two states but persistence pays off.
Thenea,
Excellent progress! This is such good news! Way to get some things off the list. Good luck getting your routine back on track, and don't rush it - takes time, and may not be the old normal, but even the smallest of improvements feel good :)
-shell
Excellent progress! This is such good news! Way to get some things off the list. Good luck getting your routine back on track, and don't rush it - takes time, and may not be the old normal, but even the smallest of improvements feel good :)
-shell
Just wanted to say thanks to everyone for the well wishes, advice and questions. I think I'm slowly starting to wrap my head around what's going on and what needs to be done.
I got in touch with my neurologist so we can go ahead with the MS dx. I spoke to a woman over at the Betaseron Patient Assistance Program and once he makes it official we can move forward with processing my application. I was told it would cost between $30-$150 per 90 day supply (or in my case, being the lowly, no-income student that I am, $30-$45). I was worried that living in one state and traveling to another for school would be a problem and she assured me it's quite common.
Until I get covered by either FL or NY Medicaid and provided I get approved by the program, at least I'll have access to medication in the interim. I know it's not a cure but I'm just adamant about staying well so I can survive my nursing program!
As far as my hospital bill goes, I applied for financial assistance at the hospital itself and was told I can expect a majority of the bill to get covered, once again because of my depressing, no-income, student status. Another sigh of relief there.
Right now I'm just trying to go about my daily routine. I started driving again today for the first time since I was hospitalized. I wound up with severe double vision but thanks to IV steroids, I got 85% of it back to normal (still double on the left but I just have to reorient my line of sight by turning my head to fix that). I'm ready to go back to school and I'm hopeful for the future especially now that I found this community and realize there's a lot of help out there for people in my situation.
I got in touch with my neurologist so we can go ahead with the MS dx. I spoke to a woman over at the Betaseron Patient Assistance Program and once he makes it official we can move forward with processing my application. I was told it would cost between $30-$150 per 90 day supply (or in my case, being the lowly, no-income student that I am, $30-$45). I was worried that living in one state and traveling to another for school would be a problem and she assured me it's quite common.
Until I get covered by either FL or NY Medicaid and provided I get approved by the program, at least I'll have access to medication in the interim. I know it's not a cure but I'm just adamant about staying well so I can survive my nursing program!
As far as my hospital bill goes, I applied for financial assistance at the hospital itself and was told I can expect a majority of the bill to get covered, once again because of my depressing, no-income, student status. Another sigh of relief there.
Right now I'm just trying to go about my daily routine. I started driving again today for the first time since I was hospitalized. I wound up with severe double vision but thanks to IV steroids, I got 85% of it back to normal (still double on the left but I just have to reorient my line of sight by turning my head to fix that). I'm ready to go back to school and I'm hopeful for the future especially now that I found this community and realize there's a lot of help out there for people in my situation.
I don't have any information to add to what others have said, but I wanted to tell you that my heart is going out to you and I wish you the best navigating them system.
It sounds like you have a good, smart neuro. Please keep us posted. All the best.
It sounds like you have a good, smart neuro. Please keep us posted. All the best.
I don't know much about the US system in terms of the new insurance laws, pre-existing conditions clauses, etc but just wanted to suggest: can you apply for compassionate aid from the drug companies directly (I would try simultaneoulsly going after all three of the interferons and Copaxone....they have similar outcomes and in case one or more turn you down you're not waiting again fo apply for another one).
Realizing even if you are acceptem this only covers the DMD, not the neuro visits, other meds you might need to treat your symptomsm, ER visits if necessary, etc; can you apply for the free DMDs now but continue to work on finding comprehensive insurance that won't disqualify you based on a MS dx, and based on getting free DMDs?
Sorry, no answers and only more questions....
I hope it all works out for you and you get all the help you need. It is a terrible time to be facing this with all you have going on right now, but you'll get through it, and you'll get lots of support here whenever you need it,
Realizing even if you are acceptem this only covers the DMD, not the neuro visits, other meds you might need to treat your symptomsm, ER visits if necessary, etc; can you apply for the free DMDs now but continue to work on finding comprehensive insurance that won't disqualify you based on a MS dx, and based on getting free DMDs?
Sorry, no answers and only more questions....
I hope it all works out for you and you get all the help you need. It is a terrible time to be facing this with all you have going on right now, but you'll get through it, and you'll get lots of support here whenever you need it,
I am so sorry you have to struggle so. If you do not have money and or good insurance life is hard with MS no two ways about it. You have to say I need and deserve the care. Many in this country are where you are. I fight for health care for folks like us every day. Things are changing slowly but changing.
Alex
I
Alex
I
Thanks for the replies!
I thought it was law too and then I read this on hhs.gov:
"Many uninsured Americans with pre-existing conditions have already enrolled in the temporary high-risk pool program called the Pre-existing Condition Insurance Plan (PCIP), which provides private insurance to those locked out of the insurance market because of a pre-existing condition. The PCIP program – which has already saved people’s lives by covering services like chemotherapy – serves as a bridge until 2014, when insurance companies can no longer deny or limit coverage or charge higher premiums because of a pre-existing condition."
But now I'm wondering, if I apply now, and I get a diagnosis right away and then need prescription coverage as well, won't it be a huge red flag to private insurance? I want to believe I could get Medicaid in FL but everyone I spoke to at the Financial Assistance Office of the hospital I stayed at during a flare basically told me "Good luck with that". :(
I also don't know if it's such a good idea to go the uninsured route and get Betaseron covered by the pharm company. I like that I could get it low cost/free, but I feel like this is a really bad time to be uninsured plus I'm clinging to my neurologist like a deer in headlights and he doesn't come cheap.
Cripes, I love that the last thing on my mind lately has been "I have MS" and everything that's been driving me up a wall is "how am I going to pay", "who's going to cover me?" and "uh oh, hospital bill". And then the tears they start a flowin'. *Sad violin*
I thought it was law too and then I read this on hhs.gov:
"Many uninsured Americans with pre-existing conditions have already enrolled in the temporary high-risk pool program called the Pre-existing Condition Insurance Plan (PCIP), which provides private insurance to those locked out of the insurance market because of a pre-existing condition. The PCIP program – which has already saved people’s lives by covering services like chemotherapy – serves as a bridge until 2014, when insurance companies can no longer deny or limit coverage or charge higher premiums because of a pre-existing condition."
But now I'm wondering, if I apply now, and I get a diagnosis right away and then need prescription coverage as well, won't it be a huge red flag to private insurance? I want to believe I could get Medicaid in FL but everyone I spoke to at the Financial Assistance Office of the hospital I stayed at during a flare basically told me "Good luck with that". :(
I also don't know if it's such a good idea to go the uninsured route and get Betaseron covered by the pharm company. I like that I could get it low cost/free, but I feel like this is a really bad time to be uninsured plus I'm clinging to my neurologist like a deer in headlights and he doesn't come cheap.
Cripes, I love that the last thing on my mind lately has been "I have MS" and everything that's been driving me up a wall is "how am I going to pay", "who's going to cover me?" and "uh oh, hospital bill". And then the tears they start a flowin'. *Sad violin*
Also, I thought it was law now that private insurance and/or public assistance insurance could NOT deny coverage for any pre-existing condition. Am I way off on this?
I have seen this in action recently. My brother (24) has been batteling cancer for 1.5 years. He was under my dad's insurance (some out of state insurance where the company was based out of). My dad was layed off effective January 13th (Friday the 13th...perfect) and my mom was able to put my brother on her insurance (BSCS) without any, ANY question...even with a current, very aggressive cancer diagnosis and treatment for my brother.
So there may be hope even if you do need to document a true DX within your medical records. Just a thought. Good luck...I'm so sorry for the horrible timing of this all:(
And yes...call the Pharm company! I'm sure you can get a very reduced cost!
Kim
I have seen this in action recently. My brother (24) has been batteling cancer for 1.5 years. He was under my dad's insurance (some out of state insurance where the company was based out of). My dad was layed off effective January 13th (Friday the 13th...perfect) and my mom was able to put my brother on her insurance (BSCS) without any, ANY question...even with a current, very aggressive cancer diagnosis and treatment for my brother.
So there may be hope even if you do need to document a true DX within your medical records. Just a thought. Good luck...I'm so sorry for the horrible timing of this all:(
And yes...call the Pharm company! I'm sure you can get a very reduced cost!
Kim
Had it book marked - here you go:
http://www.betaseron.com/patients/about_betaseron/affording_betaseron.jsp
http://www.betaseron.com/patients/about_betaseron/affording_betaseron.jsp
Hi there,
Welcome to the forum. I'm sorry for the dx, but glad you know. The increase in lesions is all the more reason to start a DMD right away. Bettebelle is so right - the pharm co's do provide assistance, especially to the uninsured. Betaseron has the longest track record where DMDs are concerned, and it sounds like your doc is looking out for you by mentioning it!
Def. take Bettebelle up on her good advice, talk to the docs office and keep the thumb on them to get you the assistance you need for the med.
Your young, and there is no need to not fight the MS beast w/what's available to potentially stop progression :)
Thanks for joining us - feel free to ask us anything :)
-Shell
p.s. if you need a link to that info - let me know
Welcome to the forum. I'm sorry for the dx, but glad you know. The increase in lesions is all the more reason to start a DMD right away. Bettebelle is so right - the pharm co's do provide assistance, especially to the uninsured. Betaseron has the longest track record where DMDs are concerned, and it sounds like your doc is looking out for you by mentioning it!
Def. take Bettebelle up on her good advice, talk to the docs office and keep the thumb on them to get you the assistance you need for the med.
Your young, and there is no need to not fight the MS beast w/what's available to potentially stop progression :)
Thanks for joining us - feel free to ask us anything :)
-Shell
p.s. if you need a link to that info - let me know
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First off welcome :). I thought I would let you know thy DMD company's offer support I am also uninsured and in school full time without insurance. I personally take avonex and the company was extemely helpful was easy to apply for. It's there financial assistance program I would inquire with the neurologist office. Let them know you can't afford it. My neuro was extremely helpful in aligning me with the financial assistance and wrote a letter for me. Good luck!