Need help from experienced MSers - insurance q's

[OrangeMetal]

hi,
i'm still new at this and trying my best to find outside answers but not having a lot of luck. i really need some basic help / advice in understanding some key insurance issues for MSers from those of you who have been through it. any thing you can offer on one or more of the q's below would be helpful. i contacted one of the MS societies and they didn't really have any specific advice.

anyone have advice on best insurance for ms?

do all insurance co's allow for deductibles to be covered by copay assistance from the drug companies?

have people run into big problems with copays AND deductibles?

any advice on how to find a health ins. navigator with expertise in MS treatment?

i have been trying to find a navigator who would understand the important issue for MSers - like - is there a way to find an insurance that won't have a high co-pay for our meds and won't have a high deductible?

i just don't know where to begin. anyone have some numbers of your own to quote? after reading a recent story on here of someone who is being expected to pay thousands of dollars a month for medicine. i always thought insurance would have covered most of that and don't know how to find an insurance that won't do that.

thanks for any help. i hope this question doesn't scare people off. sorry to be long but i have been trying to research this online to no avail.

[MSW1963]

OrangeMetal, have you consulted with a local insurance agent for info about ACA plans available in your area for advice about premiums, deductibles, co-pays and DMDs?

It may take a few calls to reach a responsive and informed insurance agent, but it may be worth the effort. While most agents may not be well informed about MS or DMDs, an experienced agent will understand the function of the policy, your needs and budget, and coverage for specialized meds in general.

Also, religious based hospital plans may offer income based assistance to insured low income patients.

[OrangeMetal]

Thanks MSW1963. I have started that research and initial responses weren't that great, but I guess I have to keep searching. I have been trying to google "experienced broker + MS" and those kinds of searches but nothing is coming up.

I'm going to keep trying. Some initial emails let me know not everyone works on commission and they have high hourly rates I can't afford. I was hoping to find some that didn't charge such rates but had commission based work. When I have asked in these intro emails if anyone has experience in MS I have not gotten a direct response to it.

But I'm going to keep trying. Was just looking for leads.

From what I understand on this board, I have seen the most positive things said about BCBS plans.

What I am hoping to avoid is finding a plan that does NOT allow for a deductible to be covered by a drug company's copay assistance program. I want to be able to use the tip on this board where you can get your deductible applied by the several month copay assistance for your drug.

I also want to find a plan that does not have some crazy 50% copay where you have to pay $3000 a month for your drug, and your drug company won't help you any further. That is my worst nightmare. I always thought insurance would cover most of it and I'm scared to get into a plan that will largely be "junk".

I'm going to keep trying. Does everyone here have reasonable copays and are able to use your DMD company's assistance copapy plan to apply to your deductible?

Thanks. Sorry this was long. It's been really hard trying to find the right info affordably.

[MSW1963]

Have you contacted any organizations that offer DMD financial assistance?

The Assistance Fund.org has online application and info about qualifying for assistance.

Link:

https://theassistancefund.org/patien...ple-sclerosis/

Another link:

http://healthwellfoundation.org//

[KatieAgain]

I will recommend one more resource for you. Call the drug company MS Patient Program such as Shared Solutions. Ask to speak directly to one of the insurance reps. They deal with MS drugs and all the insurance companies directly every day. They have to have a wealth of information available to them.

Good Luck.

[hunterd]

I think that you should also talk to your pharmacist, as they see all kinds of different plans. Since medication is so costly to us that might be a good place to start. Best of luck to you.

[OrangeMetal]

Thanks everyone for the advice. I got another lead on a state insurance type of association so inquire about MS or chronic illness type brokers. I also looked at the weblinks about and while one is only for medicare the other looks promising should it be needed.

I'm currently going out of my mind seeing all the premiums that I can't afford even on ACA as I'd barely get a subsidy on the ACA plans. But I make too much for medicaid and too much for subsidy but can't afford insurance. I got very scared after reading some of the stories on here with people with insurance that would only pay 50% of their drug and they ended up with several thousand dollar a month copays and the drug company wouldn't help any more.

I am going to keep on trying these resources. There's got to be something.

[poppydarling]

I understand your worry about junk plans — I think you've already done this research but healthcare.gov is a good place to start, because the insurance companies represented there at all levels are reputable companies. They are also required to follow the Affordable Care Act regulations (you can find out what those are online if you're not familiar already) so you won't be dealing with an insurance company telling you something crazy like they won't cover you because of your pre-existing condition etc.

Reality: what you are looking for is very difficult to find now: a comprehensive, affordable low co-pay/low co-insurance health insurance plan that allows all drugs needed without question. You will probably have to compromise on one or more items on your wish list to get a decent plan at a price you can afford.

I even have trouble meeting my co-pays/co-insurance on my big group employer plan, as well as getting some drugs approved, and it's a pretty decent plan. It's frustrating for all of us!

But my clinic knows about all of the drug company subsidy plans, and when I have been turned down by insurance, I've never had a problem with getting a drug through those programs. It might make you rest easier to draw up a list of the drugs that you think you may need, and contact your doctor's office to find out if there are subsidy programs for them. With that worry off your plate, that may give you more leeway to find a decent plan that you can afford.

[MSW1963]

poppydarling stated what I have been struggeling to say:

"Reality: what you are looking for is very difficult to find now: a comprehensive, affordable low co-pay/low co-insurance health insurance plan that allows all drugs needed without question. You will probably have to compromise on one or more items on your wish list to get a decent plan at a price you can afford."

It may be depressing to think about with already strained budget, but cut back on every non-essential expense possible. Cut the cable and high end cell service, shop at salvage markets, any other expensee you can cut, do it.

If necessary, move back home with mom and dad, or consider a room mate or 3 until you find full time employment with subsidized employer health and rx plan.

[OrangeMetal]

Thanks for this advice poppy and msw. Yeah, I already live on very little as it is. I already don't have a tv, cable, cell phone, car or hardly any new things. I just have my rent, school loans, groceries, supplements and public transportation. My job is analogous to a full time job but comprised of adjunct teaching assignments. the different teaching assignments equal a decent wage, but one within a very particular income bracket that doesn't allow for assistance.

I'm trying to stick with this job so I have a shot to get a tenure track job. You need several years teaching before you can get that. I'm too old and far away to really move "back home" etc.

But I'm going to do some serious new research with the leads here given, thanks, and will try a regular health navigator in now if they allow it or Nov and see if they know much about finding insurance like this, and other broker leads who hopefully go by commission.

Again if anyone has a tip, like "xyz insurance is good; my copays are only xyz and premiums are xyz" I'd love to hear it. Or if there are insurance co's to avoid. Otherwise I'll keep you posted.

[MSW1963]

OrangeMetal, I don't know if you've seen this NMSS link regarding DMT financial assistance organizations for those who are uninusred and underinsured.

Between an affordable ACA plan that may not cover all of your needs, the assistance foundations may help with DMT expenses. For other cost, the NMSS may help with cost of MRIs, etc., also large religious based hospital plans often offer discounts for co-pays to underinsured patients. The discounts may limit neuro visists and MRIs for patients who's
MS is more stable.

Link:

http://www.nationalmssociety.org/Tre...tance-Programs

[palmtree]

You are in a tough place, falling through the cracks in the system. It's great that you can still work but if they don't provide health insurance, it's nasty.

I have Medicare but the copays are very high. For every medical expense the first thing I ask is, "do you have an assistance program?" It's a full time job filling out the application forms but it's worth it.

I can't believe the insurance companies are not allowing copay assistance! That is TOO much.

Insurance agents aren't very helpful when it comes to MS. Every one I talk to about Medicare Supplement tells me if I have MS to forget it. They won't touch it with a ten foot pole.

Whichever plan you choose, I would make sure you have the option of getting help from assistance programs. If anyone needs assistance, it's us. If you are on a DMT made by Biogen, they have a free drug program for those who qualify. And, I'm not too familiar with this, but they also have a program where patients pay $10/mo or something like that. If your earnings are what you describe, I think you would qualify. Also, Astra Zeneca has a free program, too, if you are on any of their meds. There are so many assistance programs it's almost better to go without insurance. But seeing doctors would be difficult and I guess there is a fine now for being too poor to buy ACA.

Sorry we don't have any magic answers. Wish you luck.