Let me start this rant with stating that I do understand that in science you need to quantify things, use random samples, etc. so that your answers are as believable as possible... and I am glad someone is finally doing this although I am pessimistic that there will be any changes that come from the outcomes of that study...meanwhile I sit here in financial toxicity hell... Don't need any financial toxicity survey to determine that in my case it is severe...
Lost my job over this (had no sick days either so had to work full time though chemo and several times go to work from chemo - had both breast cancer for the second time but on the other side and follicular non-hodgkin's lymphoma (fnhl) in the same year, chemo ran through the second year with some significant side effects that took a long time to resolve). Live in a state with no medicaid expansion and I make below the income cut off for a subsidy so have to pay full price for health insurance or go without. COBRA was $538/mo, when that ran out insurance was $649/mo - with a new out of pocked and deductible in the same year I could not afford a surgical biopsy so settled for a needle one when the fnhl may have come back (likely neg but now 2 years later still issues that have not resolved), then up to $798/ mo the next year and $957 this year and I just got notice it will be $1116 in 2017 and the out of pocket/deductible went up to $6000. I have several part time jobs, just got laid off from one, was homeless for nearly 2 years, finally in HUD housing but can't really afford that, still have symptoms and there is a current discussion about whether or not they are B symptoms or something else (of what no one can say as everything else has been ruled out so the default is B symptoms again however the nodes aren't big enough to "call" but are a bit larger than last year)... I get the full amount of food stamps, still can't find a full time job with benefits, will not be able to hang on to insurance for much longer as it is more than I make. Sold most of what I own... Had a gofundme (www.gofundme.com/78d3nc) which I only used for medical and that helped but there is donor fatigue. MD Anderson cuts off care if you don't keep up with medical payment plan payments (been there done that once already), have non-exchange insurance because locally no one decent accepts it and it is only good in 4 counties (two of the companies also administer medicaid and so by refusing it facilities and doctors can get out of having to accept medicaid, United health care just pulled out of the state so we are down to 1-2 choices depending on the county; two private insurances where the prices were within $10/mo of each other this year, mine went up 17% the other one is going up 42% so clearly that will be way more expensive in 2017)... and it goes on and on...
Lets see, causes of financial toxicity in my case:
1) not being born into a rich family
2) violation of HIPPA between my job and the administrator of their self insured health insurance (I was "too expensive" thus lost my job
3) over 50 so harder to find a job again
4) considered way over educated for junk jobs (managed to snag one temp one, but otherwise no luck)
5) my profession practices significant age discrimination
6) student loans (and no the income based plans don't help in the end because you have to pay taxes on the amount written off - I have nearly $94,000 left, down from %136,000 paid off so far - why so much? Because I got breast cancer for the first time in grad school and there was no out pocket limits with student health insurance
7) out of savings ages ago
8) have a young adult child with brain damage who needs assistance (not disabled enough for social security disability but is disabled enough she can't seem to hold a job or make good decisions
9) 25 year old car died so now have small car payments on an 11 year old car
10) not much in the way of local poverty programs because I live in a state with one of the highest poverty rates in the country with the least amount of help
11) the leukemia and lymphoma society money, while it helps is just a tiny drop in the bucket
12) plenty of medical care deferred - dental (need a crown, implant, teeth cleaned), vision (have needed new lenses for 4 years), other medical issues that are not being diagnosed or treated as I can't afford the deductible nor co-pay because I have to hang on to insurance for the fnhl which is one of the incurable ones, haven't finished the breast reconstruction from the breast cancer, or evening out both sides (mastectomy both times due to size of the tumor time one, due to 5 tumors time 2)...skipping breast cancer check ups, any other cancer screenings due to no way to pay for it...
Need I go on?
Outcomes of financial toxicity for me:
1) If I live long enough I will live retirement in poverty when I otherwise would not have done so - can we say box under a bridge?
2) current health issues and likely future problems due to deferred health, dental and eye care
3) homelessness (and even in HUD housing likely to be homeless again as I can't afford even the low rent I am paying)
4) stress, more stress and even more stress, depression at one point (untreated as I couldn't afford to)
5) compromised cancer care, mostly no other health care as I need to save any money I have for health insurance and payments to MDA
6) feeling guilty I can't help my 24 year old daughter (has brain damage but not severe enough for social security disability) in some of the ways she legitimately needs help and my pre school grandchildren suffer from this too
7) do not have the money to go see my mom, who lives 960 miles away, who has her share of medical issues and likely doesn't have that many years left herself
It doesn't' take an Einstein to figure out I am not alone - there are plenty more cancer (and other non-cancer with expensive or chronic issues) patients caught like I am, there are not nearly enough resources out there to help us... society tends to then blame us for being too lazy to get a job and work (seriously? I have done manual labor with a temp job with an MBA and PhD - got hired before they knew about my education or my age since I look about 15 years younger than I am), run into medical care people who refuse to treat poor people and then I had one tell me that poor people don't deserve health care; that she is tired of supporting people like me though her taxes who are living off the "system"(hope karma gets her, I have paid into the system my entire life started working at 14).
We are supposed to be a civilized nation, instead we are a nation of lawmakers (and many others) who have had an empathy lobotomy. I might was well live in a least developed nation for all the access I'll have to health care once I can't find a way to make the health insurance premiums and/or keep up with my keeps increasing payment plan medical payments to MDA. A full time job with benefits would solve most of my problems (although digging out of debt will take a long time and student loans don't help).
And these researchers wonder about financial toxicity causes, outcomes and solutions ROTFLMAO. This is a no brainer:
Problem - the way paying for health care is structured in this country; job loss or reduced hours due to cancer, treatment or outcomes, insufficient resources to meet the needs out there, blaming the victim, etc.
Outcomes - stress, compromised or no health care (cancer or not), homelessness, premature death, etc. etc. etc.
Solutions - there are plenty out there - all we need to do is look at most other first world counties out there, their lack of bankruptcy for medical expenses, etc., there is a lack of will, cooperation, compassion, etc. on the part of our government to solve these problems