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Financial Support Discussion

What areas of financial support or assistance do you wish were more readily available for individuals living with blood cancer?

  1. Areas of financial support/assistance needed:

    1) payment of health insurance premiums, copays and deductibles.

    2) assistance with travel and housing costs if you need to leave the state or drive long distances for adequate care or stay within X miles of the medical facilities because you have treatments that require that

    3) more effort on the part of organizations to remove the stigma of having cancer with respect to your job search. We don't discriminate against people who have had heart attacks or non-totally debilitating strokes in the job market and it is acceptable to say that is why there is a gap in your resume/vita - why with cancer?

    4) A job service that helps us find jobs where we aren't going to be discriminated against for having cancer and in some cases, are hybrid or remote or have flexible hours (too many doctor appointments and you run out of sick time to go to them, then miss too much work due to that and you get fired; Americans with Disabilities Act laws not withstanding - USA centric here)

    My back story where I arrived at the above conclusions:

    I live in a state without medicaid expansion (that also routinely ranks as having the worst health care in the nation - I am trapped here for reasons not relevant to this discussion). When I lost my job because of fnhl (not by choice, I was working full time through chemo despite how hard it was as I needed health insurance and income, but since my liver and bone marrow were being killed by bendamustine and I caught every virus going around on top of every thing else due to that). When COBRA ran out I was spending $23-30,000 a year on my health care - my kid had CHIPS - kid medicaid) my financial crisis began big time. I had a reasonable out of pocket/deductible prior to then ($2500) although paying for COBRA required using retirement funds.

    Then when COBRA ran out I had to buy health insurance on the private market as I didn't make enough for ACA care (Obama care), was "older" and failed medical underwriting (although I am not sure that was allowed to be considered; I do know age was allowed to be) which means you pay triple or more for private health insurance than a young person pays. I went through my retirement savings paying for that.

    My career was also trashed due to the gap in my resume, no good way to explain it due to the big "C" word, and age discrimination. I have found some adjunct jobs (I have a PhD - second career) but was continually told I was over qualified for even minimum wages jobs I applied for in desperation. This also means less was paid into social security which has decreased, by a lot, what has gone into social security and affects that in retirement.

    During covid I was concerned about pubic contact due to the blood cancer so didn't apply for face to face jobs (and in fact I got covid while at MD Anderson Cancer Center last Dec (2023) despite being vaccinated and masked - thank you the governor of that state for not allowing MDA to require masks so many were not wearing them. Now I have long covid. As an aside - more than half of cancer patients who get covid get long covid - longitudinal study MDA did). As a result I will retire in poverty. While there is some financial aid out there, it is not nearly enough if you don't have subsidized health insurance.

    I live in HUD, have SNAP, and have medical bills in collection (I am careful to go to places that don't sue you or cut off care - only one system here doesn't do that so that cuts down on my choices, on where to get care; MDA has, fortunately, frozen sending me to collection because I do send them money on occasion - that would be rare occasion but it's enough; they do cut off care if they send you to collection).

    I have to be careful about what I earn unless I find a "real" job that pays enough to live because if I lost my SNAP I'd have lost ACP - free internet so I'd lose more than I'd gain unless a job that paid enough to pull me out of having to rely on the few free resources I have found. Not by choice I dumpster dive behind a thrift shop for things to sell. This requires having the homeless accept you as that dumpster "belongs" to some of them, so I driven some of them with what they pull out back to the extended stay slum motel that some stay in or the woods where some of them camp. There is risk involved in that I had a near miss with. And I have had to become a good scrounger with curb alerts to sell that stuff.

    The required medical facility financial aid programs out there for people without insurance (USA) are inadequate - at least around where I live. I have insurance so can't use those (it may be different elsewhere but here they only have it for people who don't have insurance, not those who have it but are still poor). I thought about dropping my insurance but at least locally I'd be worse off due to how those programs work and I'd have to pay in advance each time I was seen in order to be able to be seen and I don't have the money to do that. In the USA any facility that accepts medicare is required to have financial aid program but almost all of them are only for people who have no insurance and not those who have inadequate insurance and live at or below the poverty line - or live enough above the poverty line to get ACA insurance but can't afford ACA care premiums. Having insurance means there is only one place I can get meds for free, the rest (locally) won't help you if you have medical insurance even if you meet their income guidelines, and the one place I am getting them now is ending that program as of May 31, 2024. Not sure what I will do next about that.

    The stats in the USA is that around 1/2 of the people with medical debt eventually have to declare bankruptcy. That has consequences beyond that and isn't a permanent cure for being unable to pay for medical care.

    All this makes me want to be a medical refugee in a country that has universal health care rather than living in the USA.

    1. Thanks for the l links. I have used (eg been awarded) some of those resources . Some are almost impossible to get because in the USA the need is so great and the resources few and far between and don't even come close to meeting the need. Also when they open the program it can close in a day or two, but often within hours. It's worth trying (as I repeatedly do and get lucky some of the time) but you can't count on that. The help organizations offer is greatly appreciated and incredibly helpful, but is a drop in the bucket compared to the need. The underlying problems in the USA aren't being addressed and there is no way any organization, or even a coalition of them, can begin to fulfill that need.

      I am not sure why I am not able to post my longer reply so I deleted most of it.

    2. Unfortunately, it's a big engine that takes time to figure it out how it can assist patients as needed. Please stay in the fight of figuring it out and what organization helps if not 100% at least 80%. Keep up the fight!

  2. I wish there were nonprofits that offered grants, low interest loans, scholarships, medical bills negotiations, free things, sponsorships just anything to help for people who have cancer but not breast cancer. In my town there are a plethora of churches, foundations & nonprofits who give money & other things freely if you have breast cancer. That’s a good thing, except it assumes all other cancer patients are being taken care of by someone else.
    I contacted ACS, LLS & my local cancer clinic/hospital for financial assistance. I discovered that if I’m not on Medicaid, food stamps or SS disability my fixed income of SS & retirement doesn’t qualify me for assistance. On paper I look like I can pay for everything. So I applied for Medicaid & SS disability-turned down.
    I was diagnosed in Dec. 2022. By Aug. 2023 I had spent everything I had in my high yield savings accounts. By Dec. 2023 I had maxed out all my credit cards. In Feb. this yr 2024 I filed for chapter 13 bankruptcy. Now I’m on such a tight budget I can barely afford groceries. Why does it have to be this way? Cancer & chemo took everything from me-hair, money, health, people I thought were friends, time, pain. There should be a way to get help for people who aren’t poor.

    1. This is so unfortunate yet highly agreed upon by so many patients who fit the middlebox. You may have to delve a bit further as there are programs out there, but they are not easy to access. I would suggest having a deep talk with your doctor and asking to be connected with a social worker to help find programs that you can access that help someone in your income bracket. It can feel like a needle in a haystack digging but hopefully, you can find the resources that work best in your situation. When time permits check out the following article that gives a good amount of leads and clickable resources. Wishing you the very best!

    2. The breast cancer marketing machine is very effective and the blood cancer marketing machine not nearly so (and I am not sure there is one outside of children's blood cancers). They also try to make breast cancer a life long identifier of WHO you are and not WHAT you have or had. That, I think, is a disservice to people. We don't do that to people who have had strokes or heart attacks.

      The LLS copay programs (and some the PAN foundation, and others) allow you to earn, I think, it is either 400% or 500% of the poverty line (for your family size) for their programs (I'd have to go look at them to see for sure which it is and can vary between programs. Medicaid you have to be below 138% of the poverty line. The Social Security disability program is for when you are under 62. At 62 they switch you to regular social security so that is perhaps why you were turned down for that?

  3. I need financial help. I pay 800 in copays a month.

    1. The expense of treating blood cancer is astronomical indeed. There are a few organizations that help cover the cost of co-pays or medications. When you get a moment check out the following as it provides some good leads and clickable links to delve further. I hope you get the assistance you need to help with the expenses. Wishing you the very best!

    2. Any hospital system that accepts medicare is required to have financial aid programs for low income patients. Unfortunately more and more of them are limiting that financial aid to those with no insurance. There was a hospital around here that as long as you met their income guidelines and had insurance they paid your deductible and copays. When that system was bought now they only help those who both meet income guidelines and have no insurance. The federal government is looking into the fact that may systems are not meeting the federal guidelines for helping people under the requirements.

      The other thing is most systems are willing to negotiate what you own down (often to half of what you owe). That, of course, doesn't solve the underlying problem. What I have to do is use systems that don't cut off care and/or sue you for what you owe. I just let it go to collection, am polite when I get repeatedly called by collection agencies and just repeat that I can not afford to pay those bills; that is why I had to let them go to collection. Eventually they stop calling until more goes to collection. If you live somewhere with multiple systems check what their policies are so that you can use one (if possible) where they won't cut off care or sue you if you don't pay your bills,

      Also you can often negotiate not being sent to collection if you pay at least something a month. That is how I got MD Anderson Cancer Center not to cut off care. There were some months I paid nothing, and my debt was growing, but that I was paying something stopped that action.

      It's not easy.

  4. If you have student loans and a physician states you are totally and permanently disabled (this is not social security disability nor the VA program) you can have your student loans forgiven.

    Besides running out your time (eg length of loan payments and any balance is forgiven), or the other programs (public service, teach program) you can ditch student loans by disability. If the VA or Social Security disability labels you as disabled then they are automatically forgiven (in the VA program immediately, in the SSD program after 3 years monitoring). The third program for people who can't get SSD (and when applying for that most people get denied the first time around) there is the physician's letter route.

    The Physician’s Letter route (which does NOT get you social security disability monthly checks): you can file using this method regardless of age, but also have to file this way if you are too old to get social security disability.

    Here are the websites to get the application and more information:

    1. Nelnet’s Disability Discharge home page for the application and additional information (do not get confused when it says Federal Student Aid in the top left hand corner of the homepage; you do NOT go to the regular Nelnet website). This page has the form and instructions:

    2. Home page for Federal Student Aid which has even more information about disability discharge and other student loan information (this site will also send you back to Nelnet’s Disability Discharge website listed above for some information):

    3. Note that Nelnet creates an Account Number for you (which is not visible to you) but the Federal Student Aid lists your application ID. They are not the same thing. If you call Nelnet ask them for your account number if you prefer not to give Nelnet your social security number each time you call.

    WIth that form they are picky in how it is filled out:

    Give it to your physician, physician assistant, or nurse practitioner (after you filled out your part) to fill out their page. Tell them the following:
    a. Their license number and name need to be legible or it will automatically be rejected.
    b. If they don’t check the correct boxes on their part (Medically Determinable Physical or Mental Impairment) your application will be rejected.
    c. They need to check Yes for 2 and 3 or
    d. They need to check Yes for 2, No for 3, and Yes for 4.
    e. For answers to questions 5 though 11 both Nelnet and Federal Student Aid will ONLY read the information given if those answers are completely INSIDE the small rectangles provided for that answer. As a result, it is likely that the medical professional will need handprint, in tiny letters, the answers. Nelnet and Federal Student Aid will not read additional information attached or anything written outside of the boxes. They will automatically reject you if you don’t follow these directions. The medical professional CAN NOT LEAVE ANY BOX BLANK. Instead they need to put N/A.
    f. If for some (very rare) reason additional information is asked for then the medical provider can type up and send (or you can upload), on a regular sized piece of paper, whatever the medical provider wants to add to address the request for more information.

    There is a 3 year monitoring period before they are actually discharged, but everything is frozen for those 3 years. It takes about 2 months to go through the process (and your account is on hold while you are going through the process so no payments needed).

    YOU CAN NOT be in default for this to work. Through the end of September 2024 there is what is called the "Fresh Start Program" which makes it relatively easy to reset everything and get out of default. Info on that program is here:

    1. I forgot to mention - if you get rejected you can apply again immediately. No hearing, just a new application. I was told the odds of being rejected is very low if you follow the instructions, to the letter, I was given above. For me it took about 1 month for Nelnet to do their thing, then about 3 weeks for the Federal Financial Aid folks to do their thing. You can log on to both websites to see the status of your application (eg what Nelnet has done, if the feds have it yet and finally if you have your initially approval - remember final approval is after the 3 year monitoring period).

      During the monitoring you CAN NOT go back to school and take out more loans. That pulls your loans from the program and they are back in repayment (unless you have in school deferment). If they are forgiven and you go back to school and take out more loans then you can never get those forgiven in the future for the same disability. So think VERY carefully about your future plans before you do this.

    2. thanks so much for sharing all of this wonderful information, including your personal story! It's such an eye opener. It looks like there is a definite need for change! I know you're helping SO many people just by sharing this. Hoping your load becomes lighter.
      Angie (Team Member)

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