The cost of ALS in the long term

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worrieddaughter77

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Hello,

I would like to figure out what is going to be the financial side of my dad's illness. My dad has a very good PPO insurance in Illinois, and so far all of his treatments were covered ( when they were approved by insurance. The insurance has only rejected his spine MRI once).

What should we expect in the future? I am most worried about the time when my dad would need tracheotomy. I don't know if my dad will elect to have it or not, but in case he does, what is the cost of care from then on, and how much of it is normally covered by insurance? What is the annual cost of ventilation? Also, how many years is the patient expected to survive on ventilation?

Thank you all the immense amount of information on this forum!
 

gooseberry

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This is a very difficult question to answer. It truly depends on insurance reimbursement, copays, housing needs, if he gets a peg tube or trache.....pricing varies across the country and within a city. All I can really say is a lot. I dont think you can overestimate the cost financially, physically, or emotionally.
 

tripete

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I agree with Goose the cost is high. I don not have a trach vent or peg (and dont plan on it) but just the cost to make the bathroom usable, a wheelchair vehicle, a bed etc are all significant for us. Currently hospice is here three days a week, for about 1 hour, to help me with showers etc and that is covered by medicare.

Once your dad stops working he will probably go on social security disability and medicare. The most important thing here is not to skimp on a medicare supplement. In my state I have a part F supplement. It covers the copay, deductible and anything that medicare covers even a pennies worth of it will pay the rest of. At around $170.00 a month for me it has been worth it.

This is an expensive disease. Plan as far ahead with getting things done as possible. I did my kitchen and bathroom remodels pretty cheaply with the help of family and friends and while I was still able. I am a do it yourself guy but physical cant now. If I hadn't started early the price would have been very high. Start looking for wheelchair vehicles as soon as signs of walking issues appear. It took me four months to find one I wanted and could afford.
 

KimT

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The cost of Medicare Supplements vary widely among different states. Here in Florida I pay $570 a month for Plan F. Had I been 65, my premium would have been $160 a month. Those of us here under the age of 65 are penalized for being young. Besides the supplement, you need insurance to cover the cost of drugs, Part D. That also has a wide range of anywhere from less than $20 a month to over $200 a month. You can skip the supplement and get Medicare Advantage which can bundle all your coverage BUT beware. Some Advantage plans have huge co-pays and deductibles. Stay away from HMOs as they will limit which doctors/clinics you can use. When I got my motorized chair, Medicare paid 80% and my supplement paid the remaining 20%. The manufacturer kicked in for the elevator function on the chair. I will say that I have not paid a penny for anything other than drug co-pays and medicinal cannabis with my combination of Plan F and D.

If your dad is a veteran, he will be much better off with disease-related expenses. They get remodeling allowances, van conversion allowances and other things.

I had to move to a larger condo and the remodel to widen all doors and remodel the master suite cost around $50,000. That figure may sound high but it included things like a 4.5 x 7 roll in shower, gutting the whole master bathroom, new accessible shelving, different kitchen configuration, safety equipment, etc., bidet, high toilets.......

You can shop around for an accessible van. I chose to buy a new one and have it converted with a VMI conversion. I'll have to rely on others to drive me places and I have no mechanical ability and the people who will be driving me are mostly women who don't have a lot of experience in driving large vehicles. I bought new for their safety and got it loaded with navigation equipment. It was interesting because it seems like conversions hold their value very well if they are low mileage and kept well. I almost bought a 4-year old converted van for $20k but it had issues with the ramp and didn't drive well. I would shop around carefully for a gently used reliable method to transport.

The biggest expense is home health care. It's where our system in the US is broken. Some hours are covered by Medicare for some things with limits. You either have to be rich or have tons of family/friends if you need 24/7 care if you are vented. Otherwise, hospice can pick up when you get to a point of needing end-of-life care or go into a facility and use up money, then let Medicaid take over.

The financial stress of this disease is horrible.
 

tripete

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"Here in Florida I pay $570 a month for Plan F." wow i am 51 and pay $170 in PA. Must be all the old people in FL :)
 

Diane H

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What should we expect in the future? I am most worried about the time when my dad would need tracheotomy. I don't know if my dad will elect to have it or not, but in case he does, what is the cost of care from then on, and how much of it is normally covered by insurance? What is the annual cost of ventilation? Also, how many years is the patient expected to survive on ventilation?
The vast majority of the cost of ALS is hired caregivers. If you can get by with no or minimal hours of paid care, ALS isn't horrendously expensive. I have not needed paid care so hopefully, others can provide info about that. Medical bills and equipment are usually fairly well covered by insurance/Medicare. For example, a ventilator provider will charge an astronomical amount for ventilator rental and services but Medicare limits the amount they allow to actually be charged. My vent is billed to Medicare at $3775 per month. Medicare's allowed amount is $897.Medicare pays 80% of that, leaving just $175 for me to pay. A trach and vent does not require paid nursing care. Anyone can be shown the necessary care. There extra costs for supplies such as suction catheters and gloves but we have found that buying them our selves cost about the same as our copay would and is less trouble, not to mention avoiding the ripping off of Medicare that Medicare Providers do. A power wheelchair costs about $25,000 and is 80% covered, so that is the usually the largest medical expense. Home modifications are big expenses if you do a big bathroom remodel, but that isn't absolutely necessary. Life expectancy on a vent varies as much as life expectancy for ALS itself. With rapid ALS progression, a vent adds a couple of years, but with slow progression it can add more. The 2 big variables are whether how often pneumonia occurs and whether the patient reaches a point where his quality of life isn't acceptable to him and he elects to stop the vent and be allowed to die.
 

lgelb

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Thanks for the summary, Diane. I would just add that with a supplement or Medicare Advantage (and PALS really should have one or the other), there should be an out of pocket cap so the 20% or whatever copay on the chair generally depending on coverage and other expenses would be more like 3K.

From what we have heard, the total rental on the Trilogy or Astral may amount to more than that in many plans, so that would be something to watch for as well, and one of the reasons I advise to consider other machines as well depending on lifestyle and needs.
 

KimT

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"Here in Florida I pay $570 a month for Plan F." wow i am 51 and pay $170 in PA. Must be all the old people in FL :)
It's our Country and the fact that every State is different. Some (Florida is one) don't have a state exchange for The ACA. Yea, we have lots of old people who come down and establish residency here because of taxes. The scary thing, for me, is that if the ACA is repealed, my premium could go much higher because of how the law is now written compared to pre ACA.
 

KimT

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My Trilogy is billed at $1,995 per month. Medicare pays $1,062 and Florida Blue pays $212. I never get to own the machine. I get a new one each year. It would save the government and my insurance company money if it were rent to own instead of perpetual rental.

My cough assist machine is billed at $595 a month. Medicare pays $328 and Florida Blue pays $257. I've had it over a year so I now own it and it is no longer billed.

Because I have the Medicare supplement, I have not paid anything for either device or any of the supplies. The last time the RT was here he offered me a second trilogy because I had my chair. I refused it. At some point I will accept it.
 

worrieddaughter77

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Thank you, Diane, and everyone else for the answers. My dad is not a us citizen, he's just a green card holder. He also never worked in the US, so he is not eligible for any Medicare or Medicaid. He is too young for Medicare too. But since he moved to the US with my mom, we were buying him a very good private insurance, which was the best decision I've ever made. It is expensive, but after the deductible is paid, we have 0 copays on everything. I thought that paying for the worst case scenario is worth it, although it seemed a lot when we thought my dad was healthy. So im not worried about copays if insurance is going to cover things. I'm worried what if the insurance will refuse to cover stuff.... From what i read, insurance doesn't cover 24/7 care after the ventilator is in. What else they may refuse to cover?

Of course, if ACA is repealed, I'm worried whether they'll find a way to kick my dad off of the insurance altogether. Then we are completely screwed with having little rights due to his residency status.

Reading your posts and blog, Diane, gave me so much hope that we may actually be able to do a lot of care ourselves, once he is beyond insurance coverage, and it may not be a catastrophic cost...

ALS is a monster....

Thank you all so much for the information.
Anna
 

gooseberry

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At one point, Steves trilogies and cough assist were about 5k and our private i surance, aetna, would not cover them. I was paying $400 premiums per month with a $1500 deductible and $9ooo capped out of pocket expenses. This didnt include meds.

Our home remodel was 100k, the van 70k.

Our experience, as a cals for a pals with quicker progression, led us to purchase some things strictly for comfort. Insurance only provided the bare minimum to meet the medically necessary standard. So for instance, insurance wouldnt pay for a power chair for my husband because he needed a conveyance and I was able to push him. We were very grateful we had the VA.
 

Atsugi

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Some costs to think about:

Life insurance and long-term disability insurance
Eldercare and Estate lawyer to advise on estate distribution, advance directive, will and trust
Comfortable chair with electric motor to lift the person up to make it easier to get in and out of the chair
Walking aids of various kinds, from ankle AFO and cane to walker and wheelchair
ADA-compliant ramps in front and back of house
Modifications to house, especially for toileting and bathing
Electric patient lift with slings to transport the PALS from bed to chair
Electric powered programmable leg massager
Power wheel chair
Special eating utensils for hands that have limited motion and strength
Vehicle adapted for wheelchair
Speech-generating computer controlled by eyegaze
Hospital bed with automatically turning mattress
Chair made for the shower and bath
Portable toilet for hotels or to place next to the bed
Occasional ER visits followed by three nights in hospital and possible discharge to a specialized home
Machines to assist breathing, moisture added, cough assist
Hospice, whether at home or elsewhere
24/7 nurses at home during Crisis Care situations
Replacing nurses with others that understand working with paralyzed people
Funeral expenses
Possibly the caregivers (spouse and family) will need to get along without the primary breadwinner, and will need some time to recuperate emotionally
 

gooseberry

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I would also say that if you have a team of people to help care for your dad I think it is manageable. When there is only 1 caregiver, it is very difficult.
 

KimT

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Since your dad will be staying on the PPO, I would read all the documentation. Call, if necessary. Specifically, find out what percentage is covered for durable medical equipment and if there is a cap on out-of-pocket specifically for durable medical equipment. Before my Medicare and supplement kicked in I had a very rich plan PPO through the college but they only would have paid 80% of my wheelchair cost. Same with my Trilogy. The maximum out-of-pocket cap was $6,000 but it didn't apply to durable medical equipment.

They would have paid for very little home health care. Basically just what Medicare would have paid. Read the policy carefully.
 
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