Question

Who has extremely high family medical costs and only one income (due to disability)? i’m talking $1500-2000+ of medical costs monthly with a $4500 gross income. the cost is my spouse and the income is me. we have a 3 year old in part-time preschool. no need to suggest my spouse skip his seizure meds that keep him alive or pain treatments that keep him from suicide (which is what you would be suggesting if you said “lower the medical costs”). looking for solidarity- extra points if you’re the breadwinner with a disabled family member. thanks!  *edit, due to the questions: -$900 insurance premiums monthly; -$400-700 prescription costs monthly (with all applicable manufacturer coupons); -$500-900+ copay/coinsurance costs monthly; -$150-200 travel to dr monthly (he can’t drive, has to take lyfts or lyft to train, depending on which dr and where; no public transit in our immediate town or county)

Answer 1

I can completely understand! I’m also the main financial provider and my husband is very sick and our monthly medical expenses are enormous. Last year he need monthly injections to just be able to breathe that was $4000 each luckily I only had to pay for one and a half bc our maximum out of pocket was $6000.  

Comments

@monafo Smith finally, somebody who gets it. i’m SO sorry for your pain and suffering. thank you for replying.  

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Im working 3 jobs to just try to stay afloat. Luckily my youngest kid is 14 so I don’t have day care expense and it gives me ability to work extra. My husband doesn’t have enough work credits to qualify for disability.  

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@monafo Smith i feel you!  i work 2 jobs. it’s exhausting!  

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Do you have family help? My husband has his parents that help a lot taking him to And from drs. Helps me From missing a lot of work

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@monafo Smith my husband’s family- 0 involvment. my family- helps greatly with my daughter (my dad), dropped josh off at the neurologist this morning as a favor to me (typically i only ask for childcare help, not rides to medical appts also).  

Answer 2

I'm so sorry. This is ridiculous.  

Answer 3

I’m so sorry. Can he get disability? Or can you get $ for taking care of him from the state?  

Answer 4

I am not the breadwinner. I am the disabled partner. Sending all my love and understanding ♥️

Answer 5

I’m the bread winner. And currently on disability leave. Have you shopped around for the meds? My sister had too for her seizure meds. and even use a coupon.  

Answer 6

I would see about getting him on disability/medicare to help with the costs of his medications.  

Answer 7

I would apply for Medicaid/Medicare. Those insurance and copay cost itself it debilitating. That what a friend of ours had to do. Get in contact with a local social worker.  

Answer 8

I do! My husband has cystic fibrosis and is currently on a list for his second double lung transplant. We have to relocate for 3 to 4 months afterwards and it is stressful. We have no extra money for debt, all extra goes to the transplant fund as i will not be working during that time. He is on disability and has a small check from his employer, he was lucky enough to retire due to fully being disabled. Some things that have helped us 1. Talk to your doctor or pharmacy and seee what they can do for help on the meds. You could quantify for low income help and get meds free, the pharmaceutical company gives my hubby one rejection med free. 2. Disability, after two years he could qualify for medicaid/Medicare and that will help. If he is not on disability, fight for it. Luckily we sis not have to do that as CF is a terminal disease. 3. I am not sure of your insurance situation but, we found out this year that my insurance has a lodging and tracel plan. It will pay us ip to 10k if we live 70 miles from his doctors facility, and we do. Hope these helps. Good luck and stay positive!  

Answer 9

I have no ideas but I will pray for yall!  

Answer 10

My main suggestion would be to raise your income. My brother-in-law is the breadwinner with two very medically complex sons. They fly from TX to OH monthly for treatments, are both in wheelchairs have daily therapies, lots of medication, etc. They wouldn’t be able to do it on $4500 a month.  

Answer 11

Look into RX discount cards/programs such as good rx - that is an ap you can download and check his meds to see if you save additional money. Also, the copays for meds vary widely from pharmacy to pharmacy. I’d call every. single. one. In your area with his lists of meds and ask what their copay is. I had no idea how much the difference can be until I did this for my terminally ill friend last year. Depending on your state (I live in NYS) Medicaid may have a “spend down” program where you pay a small premium to them to qualify. That would drastically reduce your medical costs.  

Answer 12

Get the app good rx! It’ll help bring down the cost of meds.  

Answer 13

There are grants, calling the pharmaceutical companies directly for a discount, buying meds in bulk (3 months at a time) etc. you might search for a FB group of other people dealing with similar issues. You are not the only one. It's hard, but it can be done. More people than you might think, deal with this daily!  

Answer 14

If someone has every suggested that he doesn't take his meds, needs to be seriously slapped! And I'm sorry if anyone has ever suggested that. I would see about getting him disability or SSI. My SO gets SSI, it's not much buuuut it comes with Medicaid.  

Answer 15

Just sending some support your way. I am the disabled spouse. Does he have work credits? Please apply for disability for him and don't let up. It took me 30 months to get mine approved. You can use a lawyer but they will take 30% of the back pay you were awarded. I did not use a lawyer. Just file ever single appeal and stick with it. After 24 months of disibility I was given medicare and my prescription cost dropped to 3. 60 per prescription per month. I also applied for QMB at that time and I don't have to pay my medicare premiums and I can't be charged a co pay in most instances but that is tied to income.  

Answer 16

I am the breadwinner spouse not disabled but we chose my current position, moved our family states because of my healthcare benefits. I get family healthcare and employer pays monthly premiums for medical but dental and vision is like $150 extra I get deducted. I think our copays is $1500/person with out of pocket max being $4, 500/ person. I would find a job with better health insurance.  

Answer 17

Check with your insurance, some have a transportation stipend, some clinics here (southern California) offer shuttle service. Or maybe he can split costs with other patients that go to his clinic. Some pharmaceutical companies offer rebates . or maybe ask his doctor for samples? We have a county program that offers in-home caregivers. It's income based, maybe you qualify for something like that.  

Comments

I don't know if this is legal or not, but a lot of my neighbors (senior citizens) used to go to Canada to buy their meds. It's common here to do some medical tourism since Mexico is so close to us. I've actually gone to Tijuana for dental work. Some accept American insurance. I really can't give you any leads though because Mexico scares me. Maybe he can be part of a medical trial to get his meds for free?  

Answer 18

Move to a country with "free" healthcare?  

Comments

You’re still paying for it.  

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When we lived in a country with “free” healthcare, we lost 45% of our income to taxes.  

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Jess Marie That's why I put free in quotes because you'll be taxed higher but, in this situation it might be worth it.  

Answer 19

You don’t need a Costco membership to use the pharmacy and they tend to have better prices. Make sure you compare to those as well

Answer 20

I think someone else mentioned it, any branded products in addition to their RX discount cards often have programs to help with costs. They’re more complicated than the RX cards because they do require salary/assets info, but usually the $ amount you need to be under for salary is multiple times the poverty level.  

Answer 21

Does your hospital have financial assistance? We made sure all of our doctors were through the hospital and they even offered medication assistance with it.  

Answer 22

Have you tried applying for SSI/Disability?  

Answer 23

No recommendations but I’m in the same boat with you!  

Answer 24

This is a complex situation. Have you tried for medicaid? With medically complex situations sometimes you can receive it even with a higher income. It's awful that the government doesn't help people in situations like these better.  

Answer 25

If he gets his meds form a specialty pharmacy like one that calls you on the phone and ships somtimes they have a secret fund for people in hard positions I have gotten that before

Answer 26

Look into CBD/THC treatments. They can be cheaper and help tremendously! If you’d like proof check out Supernova

Answer 27

Sounds like in all accounts he is disabled. Have you applied for disability. Adult Medicaid would help. Asking dr. to change his meds to something generic or cheaper. We did this for our patients all of the time.  

Answer 28

One way to at least cut the Lyft costs (because it’s so expensive), would be to ask friends and acquaintances if they or someone they know could help with the driving. I would think it could cut your transportation costs in half  

Comments

Right, I’m just suggesting that even paying someone privately is cheaper than Lyft. Because Lyft has to pay the driver + the company. Whereas privately you could just pay the driver.  

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Thats why I said it could cut the transportation costs potentially in half.  

Answer 29

Has anyone tried “Good Rx”, I think that’s what it’s called to help find their meds at a lower cost?  

Comments

Yes, indeed. I use this for my husband (a veteran). Yes, the VA charges $8 for each prescription; but when needing a rx NOW, the delay is unacceptable and we have to pay out of pocket, regular price. So, Good RX is great.  

Answer 30

Someone might have already suggested this but there’s a lot of answers to go through. Do you use generic drugs or brand? You can ask at the pharmacy for the generic version of whatever he’s prescribed and sometimes the cost can be cut in half I’m Canadian and it makes me so sad to see things like this ☹️ Are there support groups for his condition in your area? They are free and volunteer run and maybe you can bounce some cost saving ideas on people with similar issues. Plus just having someone who is going through something similar is really mentally empowering.  

Answer 31

Is he on ssdi? My husband is the breadwinner and I have to stay home (1 child with cerebral palsy, epilepsy etc, 2 with autism) My son is on ssi and that helps tremendously with medical bills. Also. idk if its an option. can you possibly find a different job with better insurance? We pay out 600 per month just in insurance. Not including travel or co pays.  

Answer 32

Some say generics but sometimes if you call the brand you can get discount cards that make it even less than the generic would cost you.  

Answer 33

Check with local epilepsy foundations as most have medicine funds even if it’s 1 time. In regards to him applying for SSDI keep applying most people get turned down 3-4 times. Also look who the manufacturer is on his meds most have depts that specialize in assisting patients with costs and they may even give scholarships for meds. Be okay with letting the Dr. know the Med is costly some will give you samples or find another Med that’s comparable. Once he qualifies for SSDI fill out paperwork for extra help if assets aren’t high and they will assist with copays and Med cost. Also, go with smaller mom & pop pharmacies vs larger chains as their prices tend to be higher. Don’t go generic unless stated it can be done by Dr. as AED are not like popping Thankslenol’s FDA states it only has to be within a certain % of the same ingredients as that’s how break through seizures happen, you can always appeal the insurance to keep the brand in a more costly Tier. Apply for hospital financial aid, even if it doesn’t cover the Dr at least it does cover the hospital bills. Check to see if your insurance covers medical transportations as some do and also see if your area has Lyft monthly and/or if you build a friendship with your Lyft driver they maybe willing to do it outside of Lyft at a set rate. Also, paratransit may be an option if you’re near a public transit route.  

Answer 34

Not sure if this was mentioned above, but GoodRx has worked for us

Answer 35

Seriously, investigate "Patient Access Network". They assist many, many patients, including myself, with assistance with ultra expensive drug cost.  Otherwise, our savings would have been depleted. please check them out.  
https://panfoundation.org

Answer 36

I mean maybe this is crazy, but have you considered making a major move? Canada? Close to the border where you could get your medicines across the border? Is that how that works? Am I an idiot? I am so sorry. Terrible terrible terrible.  

Comments

@unemployment727 possibly. that would be more long-term. we are happy in our community currently. i don’t want to uproot from my new job or my daughter’s schools right now.  

Answer 37

I know that this sounds insane but what about getting a divorce? He should qualify for Medicaid/Medicare and his own SSDI income then and possibly more assistance. I’m not sure where you’re located or really all the laws but I’m aware that marriage for people with disabilities can actually be hindering because all the benefits they offer otherwise are pulled out once a spouse’s income is involved. Sorry I don’t have a better solution. I hope you find something that works for your family soon.  

Answer 38

Being disabled he should be able to get SSDI and Medicare.  

Comments

@mambo right? you’d think but 3 years in and it’s a nope so far. multiple denials.  

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@brutus ugh. have you consulted with a SSDI attorney? I hate the thought of it since they take a percentage of what back SSDI comes in but they may be able to get it done.  

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@mambo yep, we’ve had them since 2017.  

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@brutus I’m so sorry that’s gotta be so frustrating.  

Answer 39

Can you try to apply for in home supportive services? I am a parent caregiver for my daughters who are disabled. It is a tremendous help with our income. Also have you looked into Headstart for your preschooler? It’s a free income based program. My daughter has been in it for two years now and I’ve been pretty involved. I highly recommend it to parents, it’s a great resource.  

Answer 40

Does his insurance reimburse gas mileage to medical appointments

Answer 41

It’s very stressful. You can take his transportation and mileage off your taxes. You should qualify for more medical discounts. Also if it’s possible have you applied for SSI for your husband. A lot of school have good discounted programs for preschool. I’ve actually have to get some of my prescriptions sent from Canada due to the cost in the US.  

Answer 42

See if the clinic you use has a financial assistance program. It's a pain in the butt to apply but if you qualify as long as you use their clinics you could get a % off up to 100% of any out of pocket costs.  

Answer 43

Just here to say that I'm so sorry the system is stacked against you. Hopefully, real change comes to our healthcare system and fast.  

Comments

@cowbird3655 thank you