WTF do I do? And why does the American Healthcare system suck so much?
August 12, 2010 2:08 PM   Subscribe

YANMD-YANML Filter: After years of not having health insurance, I recently took my shiny new insurance card to the doctor to get a checkup. They found I had a horrible disease. So, wtf do I do now?

The treatment is going to make it hard (if not impossible) for me to work. I'll lose all my hair and be incredibly sick for a while. I don't qualify for short-term disability, as I have not been with this company for a year. If I don't work, I won't have insurance. SSI pays $300 a month, (which no one in the whole world could live off that), and Medicare/Medicaid only pays 80%, leaving me to pay the 20% out of my $300/month check. Since I haven't even started the treatment, applying for SSI seems pointless because I can work for the time being, and applying while you work is self-defeating.

Do I try to work through the treatment? Do I put off treatment for another 9 or so months until I qualify for short term disability, taking the chance it could get worse? Do I quit my job and let MC/SSI slowly starve me to death, all the while losing all my material things to boot? (I realize that material things aren't that important in the grand scheme of things, but getting treatment for an ailment doesn't do any good if you starve to death first.)

Just to head it off at the pass: My parents are dead, so no help there. My boyfriend's insurance doesn't cover spouses, so we aren't gonna get married so his insurance can save my life. The rest of my family consists of people working hard for little pay to take care of their own, and I'm not about to make it harder for them.

Please help me see what is the least harmful choice in an impossible situation.
posted by From the Fortress to Work & Money (18 answers total) 8 users marked this as a favorite
You want to contact the relevant "Foundation for Horrible Disease" people to make sure you've got access to every conceivable form of support out there. Do this first, before imagining further worst-case scenarios.
posted by kmennie at 2:13 PM on August 12, 2010

Sorry for your terrible news and situation. What's the progression timeline like? Would it help if you identified the disease, so people could take that into account?
posted by iftheaccidentwill at 2:13 PM on August 12, 2010

I'm so sorry that you're dealing with this. Have you searched the internet for any foundations that might be able to help you afford your treatment and/or living expenses during treatment? Sometimes there are groups specific to various diseases that provide this kind of service. A social worker at the hospital or clinic where you expect to receive treatment might also be able to help you locate financial help. The doctor who diagnosed you should hopefully be able to refer you to someone like this.

On the chance that you might be referring to some sort of cancer (based on your description of treatment side effects), please try contacting The American Cancer Society -- they have a hotline at the top right corner of the page. They have people who can connect you with resources.
posted by vytae at 2:14 PM on August 12, 2010

SSI pays $674 per month:

Maximum Federal Supplemental Security Income (SSI) payment amounts increase with the cost-of-living increases that apply to Social Security benefits. This year there is no COLA, so there will be no increase in SSI payment amounts in 2010. The monthly maximum Federal amounts for 2010 are $674 for an eligible individual and $1,011 for an eligible individual with an eligible spouse.

If you have a work history you'll be applying for SSDI, and SSDI can pay considerably more per month since it's based on your recent income. You can read more about each program and the differences between them here.
posted by The Straightener at 2:16 PM on August 12, 2010

Try to work through things. If you have a sense of progression, talk to your manager about what a schedule will look like for you. Are you going to need significant time off for doctor's appointments or treatments? You're going to have to talk to someone at work about this sooner or later.

If it was me I would try and work for as long as I could. My mom recently had to take time off work when she got a horrible disease, but once she got through treatment & was stronger, she went back part time and they were happy to have her back.

I think you try to work through the treatment and negotiate what you can for as long as you can. That's what I would try to do as well.
posted by micawber at 2:28 PM on August 12, 2010 [2 favorites]

Check with the United Way (dial 2-1-1) to see if they can refer you to places for help. There may be a variety of local nonprofits they can send you to, each with their own resources for food, clothing, shelter or finances. Either the United Way or those nonprofits might know of national resources.

If you're religious (and even if you're not, and you're ok with talking with church folks), congregations often offer financial help and referrals as well. You're going to have to get comfortable with advocating for yourself by asking questions and asking for help. I wish you the best of luck!
posted by runningwithscissors at 2:36 PM on August 12, 2010

I'm very sorry for your bad news. Forgive me for looking through your past questions, but is this the same place you're currently working?

If so, and especially if it turned out well for you (i.e., a crackdown on the moron coworkers from above), you've probably gained at least a little leverage to use in fitting your schedule around your illness, or in extending your health benefits as long as possible.

Not that you should take that to the extreme, of course: "Man, you're lucky I didn't report this to the news, aren't you! Now how about another year of health insurance while I can't really work?"
posted by supercres at 2:40 PM on August 12, 2010

I'm sorry to hear of your horrible disease. What a shock that must have been for you.

A few years ago, I had a horrible disease (cancer, with chemo and attendant hair loss and fun side effects) and managed to go to grad school (MA program) full-time. It helped that I had incredibly supportive instructors and could do a lot of work from home. It was not exactly a breeze, but very very do-able and I got good grades and didn't have to repeat or drop a class.

I would try to work IF: you have a desk job, you can work from home at least part-time, you have the support of your supervisor and coworkers. There is almost certainly a chapter of a [Horrible Disease] Society that can give you advice over phone or email. If it turns out you can't work, they might be able to point you to a source of disability payments, or your hospital social worker might know of a way to remain on your insurance while on disability.

Good luck in this tough situation. My email is in my profile if you want to talk one-on-one.
posted by Rosie M. Banks at 3:08 PM on August 12, 2010

Best answer: I am so sorry you are going through this

The only advice I have for you is not to quit your job. Let them fire you or lay you off for exhausting your leave of absence or whatever. Just don't leave voluntarily. This might allow you to get unemployment benefits (if your employer contests your unemployment after you apply there will be an might win) AND you also MAY be eligible for the COBRA health insurance subsidy. This would be a better financial situation than SSI or SSDI.

You may not end up being eligible for all of these benefits, but if you quit your job instead of waiting for them to fire you, you for sure won't be eligible.
posted by mjcon at 3:24 PM on August 12, 2010 [2 favorites]

As others, I am sorry to hear of the diagnosis. Have you gotten a second opinion on this diagnosis though? Another doctor may have better treatment options, or a different view of treatment from the obne you've seen. As someone else said, don't quit. Get a second opinion from a completely different doctor.

How long have you been on the job? Three months? How long will it be by the time you have another opinion, and a course of treatment? Good luck, I hope everything turns out to the best.
posted by kellyblah at 3:42 PM on August 12, 2010

I am so sorry that this is happening to you. Along with others' great advice to contact the ACS and other non-profits, what about your own workplace's HR department? Even though you haven't been with the company for a year, if you go to them with a "how can we make this work?" attitude, maybe they can help you.

Another tip comes from my experience with my mom when she had cancer (she kept working through chemo because she's nuts, but she's all better now!): see if your insurance carrier can provide you with a "case manager." I don't know the specifics of it, but when my mom was diagnosed, she went through her provider and had a real human person assigned to her case to help manage the insurance coverage for her cancer--because that stuff is straight up confusing even when you're not on drugs. Perhaps if your health company offers a case manager service, that person can help you figure out how to make it through this with your job and finances intact.

Sorry I don't have more concrete information to give you. Please do keep us posted on your progress--both your health and your employment situation. Hopefully AskMe can continue to help you out. I wish you the very best of luck and health in dealing with this.
posted by Fui Non Sum at 4:08 PM on August 12, 2010

Best answer: I'm so sorry you're going through this. I'm currently going through cancer treatment that, when it's all over, will have lasted about a year. I've been able to work intermittantly -- I'm currently working normal full-time hours in the office, but at other times have only come in part-time, or have worked at home, or haven't worked at all when I've been too ill -- due to the nature of my work, the support of my supervisors (and my HR dept.), and certain protections under the ADA and the FMLA. Even though you aren't covered by the FMLA, unfortunately (since you haven't worked for your employer long enough), the ADA should still apply in your case (whether or not your horrible disease is cancer or something else), which means that your employer has to make certain accommodations for you.

I also agree with those upthread that you should not quit your job; let them lay you off, if it comes to that, so that you can apply for whatever benefits you might be eligible for. And, also to agree with others, please check with the national foundation/organization/whatever associated with your particular illness -- they can refer you to resources that will help you given your specific condition and circumstances.

Do I put off treatment for another 9 or so months until I qualify for short term disability, taking the chance it could get worse?

This is a question that may be worth considering, but only in consultation with your doctors (and do be sure you've gotten a second or even third opinion). I had to do this with my first brush with cancer about 13 years ago (yes, I keep winning the medical cake walk!), for somewhat similar reasons. Since the type of cancer I had back then (namely, thyroid cancer) is pretty nonaggressive, my doctor and I decided to delay treatment until I had insurance because the risk of it progressing to a dangerous point within that period of time was so low. In other words, we were willing to take the chance, because the odds were pretty good in my favor. That may or may not be true for you, but you should talk to your doctor(s) to at least find out what your options may be.

I wish you all the best.
posted by scody at 4:10 PM on August 12, 2010 [2 favorites]

I didn't see any mention of you getting a 2nd opinion. I'd do that first, before I worry about anything else. There is a 50/50 chance that your doctor finished in the bottom half of his/her class. Doctors are human, they may mistakes. Some make more mistakes than other. Since it sounds like this is a doctor you didn't particularly know well I'd get a 2nd opinion yesterday.
posted by COD at 4:41 PM on August 12, 2010

I'm sorry all of this has been thrown at you so unexpectedly. I know what helped my mother, mentally, was to keep working as much as she could while she was undergoing chemo. Getting another opinion wouldn't hurt either while looking into social welfare programs. Good luck to you.
posted by Wuggie Norple at 7:16 PM on August 12, 2010 [1 favorite]

I think you need a lawyer to help you navigate social security and state and federal leave laws.
posted by bananafish at 8:02 PM on August 12, 2010

If you Google "working with cancer" and "working during cancer treatments" you'll find a lot of resources and advice for people who have to keep working while they're really, really sick. Some people even say that working helped them recover faster because it gave their lives purpose and structure.
posted by Jacqueline at 10:10 PM on August 12, 2010

Absolutely get a second opinion, both about diagnosis and treatment.

Please pursue a referral for mental health services and social work services.

And please don't make up your mind right now about any of this. Be open to changing your outlook. What seems important now might not when you are in treatment.
posted by FergieBelle at 6:23 AM on August 13, 2010

Do I put off treatment for another 9 or so months until I qualify for short term disability

Since you have a diagnosis, will you be able to sign up for disability that will cover treatment for the active issue? Or would they exclude it? If they'd exclude it, there's no point waiting for it.
posted by galadriel at 6:05 AM on August 14, 2010

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