Staying Insured

[ethan508]

Being on this forum has made me question my assumptions about health care coverage a bit. One of my 'goals' in life is to never be without health insurance in some form.

To pay straight out of pocket the $15k of monthly drugs it takes when CF peoples are healthy (not to mention the $$$$$ when hospitalized) is an insurmountable task. But I've always thought if I kept some sort of health insurance, I could come up with the premiums, deductibles and copays (I figure that would be about $1600 per month). My state made some protections for maintaining health insurance even with pre-existing condition back in 2000 and the ACA has since strengthen those. So I just don't feel like I would be denied coverage. I'll do whatever it takes to pay the premium for health insurance (even sell my truck and the house) because without it, I'm stuck.

For now my plan is to keep some sort of employer-paid coverage. If laid off I'd pay for Cobra or look into an ACA marketplace plan, or private insurance. The tough assumption to make is how long it might take to find a new job (I assume 6-12 months). Savings to pay for coverage for 6-12 months is a very big task, but far more doable than saving for out of pocket meds.

I feel like once health doesn't allow for employment, then it is onto SSDI, and Medicaid/Medicare. But the gap between SSDI and Medicare coverage seems misplaced. Is there a prescribed way for having health care coverage during those 24 months? Is an SSDI payment big enough to cover marketplace or private insurance premiums and co-pays?

So are there any holes in my plan? Have any of you had experiences with a loss or gap in coverage that you could have better prepared for with more knowledge?

 

[believingjesus]

This may be a gap in your plan - idk if it is or not - What happens when your doctor prescribes you to do many more treatments than you may do now on a regular basis and exercise much more on a daily basis but the SSA still feels you are "healthy" by their requirements? You apply for SSDI and they deny you, like has happened to many, many people. You keep trying but they keep denying you as you are not "sick" enough. Then your doctor wants you to do IVs at home because you have CF and they don't want you to pick up anything in the hospital? That doesn't qualify as a "hospitalization". From what I hear there are so many people fighting to get on SSDI because their health is declining but they are still not "sick" enough. If they were able to get on disability then they would have the time to try to do all their treatments and exercise. This is a full-time job doing this. I feel people with a lung function of 60 percent or lower really need to have the time to work on keeping their lung function up. I can't even imagine 60 percent.

I once talked to a man who has since had a lung transplant (and is still going strong) and that was many many years ago. All he did was work on his health every single day and what he explained he does was SO much. Even a person who has had a lung transplant and is on SSDI only has one year to miraculously get over that and start working again. To me that is despicable.

When the SSA finally approves a person for disability they have to wait another 24 months for Medicare coverage which if they don't have insurance, their health declines. I know this is not a "cheery" fact but it is the truth. It breaks my heart. To me you probably have to have an extremely good paying job and start saving money back to always be able to cover your health insurance. A lot of people with CF have been struggling in their late teens and twenties just to stay healthy and have not had the opportunity to even worry about going to college and trying to get a "good" job, a job enough to cover the amount of money we are talking about you have to save to get by that 24 months and also eat.

Some good news tho - I have looked at the ACA and talked with a lady there this week. She set up an application for me and my son as an authorized user so I can go on the website and look for coverage for him to help him out. She helped me and told me it did not matter if my son had employer coverage offered. He did not have to take it especially if the coverage he could find on the marketplace is cheaper. I looked at the plan my son has offered to him by his employer for next year. It said that he had a yearly out-of-pocket of $6,000 but the monthly payments were low. The lady helped me find a few plans that are offered in my sons state. We found a Platinum plan that costs $302.00 a month. It only has an out-of-pocket of $1,500 a year! Along with the premiums, it is still cheaper than his employer offered plan. My son already makes to much money to qualify for any subsidies. The income to qualify for subsidies is $11,000/yr. to $49,000/yr. He already doesn't qualify for subsidies. It covered all specialty drugs. Also even the catastrophic plans offered had a yearly out-of-pocket of $6,600! The other Platinum plans were comparable to that plan. When I had looked before I was seeing $450 a month plans. I don't know why it differed this time but she helped me through it so I guess we did it right. I am going to wait to closer to the date we need it and my son is considering getting it on the marketplace.

If you could save enough to cover your insurance premiums and have that when you are finally approved to get on disability then you could keep the insurance through the marketplace until you are finally approved to get Medicare.

 

[Aboveallislove]

I'd check the network for the plan and make sure it covers all of the doctors and hospitals and pharamacies he uses. If a doctor is out of network, there is typically a different/separate deductible AND the insured is required to pay the charges above what the insurance determines if allowable. So, if the doctor is out of network and charges $890, but the insurance finds only $200 reasonable, then the individual would have to pay the out of network rate on the $200, so maybe $100, PLUS $690 which is above the "allowable" rate. And that $690 does not count for the maximum "out of pocket" because it has nothing to do with insurance...it has to do with your agreement with the doctor to pay them for the services. If all the doctors and all the clinics and the hospital and the pharmacy are in network, then it isn't an issue. BUT from what everyone is reporting, most of the exchange plans have very limited networks so I'd make sure to check that out (and not just hospital or CF center because the hospital might be in network but not a doctor!)

 

[Aboveallislove]

Also, the premiums he pays through his employer are pre-taxed so he isn't paying taxes on that money, but if he doesn't buy it through his employer, that money is taxed on the money earned that he is using to buy the insurance.

 

[believingjesus]

I didn't know about the money he pays for premiums on the marketplace that he would have to pay taxes but it is okay. I did understand that he would have to use everyone "in network" which doesn't go with his present doctor in another state. He understands that too but the insurance offered through his employer is the same company as the one we looked at but it does cover out of network too so that is something he needs to decide on further. I still am so very thankful for the ACA. If he had not had that he would have had to go off our insurance at age 23 and we would be in dire-straights as insurance didn't use to have to cover pre-existing conditions. I can not applaud the ACA enough but I know it has some problems. I am going to look into the marketplace insurance further regarding the specialty medicines even though she said it would cover them and I put in the specific ones he is on and it said it covered them. I also put in Kalydeco but it kept bringing me back to the same page as if it didn't recognize it. I figure they have to cover it but I will for sure check into that further too. I always appreciate your helpfulness aboveallislove as you have provided me many times with powerful insight.

 

[Aboveallislove]

FYI before ACA hippa required coverage of pre existing so long as no lapse in coverage. I checked this after ds was born and worrying what would happen if I changed jobs r when he grew up. Not perfect but he would have transitioned from yours to employer even with cf. I cannot stress enough the importance of making sure you understand how the out of network works because it could be 100,000 of dollars!

 

[believingjesus]

Okay. I will be sure to check into that next week as I am really not familiar with out-of-network anyways but I am going to pick that plan and then call the company and find out exactly the ins and outs without actually purchasing the plan. We certainly don't have 100,000 of dollars so I really do need to know. Our out-of-pocket now usually averages $7,000 a year which hurts at that.

 

[Aboveallislove]

Believing: Here's the thing to be clear on: If it is out of network the plans require you typically to pay a higher amount of the "allowable expense" BUT then you are response for anything above the allowable expense. So let's say in network you pay 10% and out of network 30% you might think that's not that much, BUT that's only part of the equation. So if an in network doctor charges $800 and the "allowable expense" is $400, the insurance company will pay 90% of the $400 and you will pay $40. But if it is an out of network doctor and the charges are $800 and the "allowable expense" is $400, the insurance company will pay 70% of the $400, and you would pay $120 + an extra $400, which is the amount of non-allowable expenses. The "in network" doctors agree not to bill you for the amount above the allowable expense. The out of network doctors don't. IF he has lots of expenses in a year, it could rack up quickly that way. But unfortunately insurance is "gobbled-gook" so they will tell you that you are response about the allowable expense, but it is important to understand what that means. And to understand that that amount for out of networks is not in the maximum out of pocket calculation.

 

[jaimers]

Also as Aboveall mentioned make sure both the doctors themselves AND the hospital are considered in network. I ran into an issue recently under new insurance coverage where my hospital was in network but my doctor was not even though he works at that hospital! Crazy. I ended up asking him to join the network (on the advice of the insurance company) and turns out he had been part of it at one time but it had lapsed or something so he was able to join right back up and I didn't have to switch doctors. It would have cost me more than double the "in network" out of pocket costs because it would have been billed like Aboveall described to continue seeing him "out of network."

 

[believingjesus]

Oh my goodness! I did not realize even the doctor that worked at a hospital that was in network could still be out of network. There is so much to learn when they are picky like that. Thank you Jaimers for telling me that. That is something we wouldn't want to learn the hard way for sure. I guess before he would do anything if he got the marketplace insurance he or I would have to check each place and doctor and pharmacy, etc. to make sure it is in network. Seems like a lot of work. We have Blue Cross/Blue Shield right now but it is independence Blue Cross (if that makes a difference) and is a self-insured plan. From my understanding the insurance company goes to the employer and the employer pays for the employees medical expenses so I honestly do not understand it or why we have insurance if they are just managing the plan. Awhile back the insurance company had to go to my husbands employer to see if they would cover the full cost of Tobi as they had to update his file, I guess yearly, and Tobi was more than they allowed. I was a little shocked. It is over my head. Anyways, thank you aboveall for the explanation of in-network and out-of-network. I guess I would have to find out if any labs and tests, etc. are in-network too before they get sent off. I feel a headache coming on!!