Did you hire a babysitter or use alternative medicine during cancer treatment? Did you have to work during treatment? Do you skip doctors appointments? Have you lived your life larger after cancer by traveling or switching to a new career you love? The answer to these questions hinges largely on money. So why the hell do we never talk about money in the cancer community?
As a cancer patient I was damn glad to receive state disability, alternative medicine care at a clinic for low-income women, and pro-bono legal help. I talk openly about these experiences because I wanted people to know these resources exist. But I realize that everyone has different comfort levels in how much they talk about money.
In my travels interviewing young adult cancer patients, I spoke a real mix of people, some of whom were very quiet about cancer and finances. I talked to one woman who kept secret from all her friends that she was receiving government assistance and other forms of financial aide. I met other young adult cancer patients who broadcast loudly through the grapevine their need for money, like Seth who had an art auction and benefit performance to raise rent money and pay basic living expenses during treatment. (I recently learned about a program called Give Forward that sets up personal web pages so patients can accept cash and credit card donations from friends and family to help with medical needs.)
When I returned to work after treatment I was not living my dreamy life as a writer. I was working a crappy, low-paying job that left me creatively void. The only reason I have been able to write Everything Changes and maintain this blog is because I’m frugal as hell (I was in my late 20s before I ever bought a beverage in a coffee shop or purchased a CD!), I didn’t have medical debt - for which I am grateful on a daily basis, and I got married and now have more flexibility as part of a double income household. (In my book I refer to people like me as the married cancer bitches.)
I have it good. And know that isn’t everyone’s story. I often hear the line that if you wish for something hard enough you can make it happen. Yeah, well not in this country. Not with this medical system. Not with cancer.
How much has money impacted your cancer experience? Have you ever received assistance or would you ask for help from friends or family? What is the most frugal maneuver you’ve ever made?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
January 28th, 2010 at 9:18 AM
cancer has absolutely impacted my finances! not only am i in student loan debt, but i now can add medical debt to that. to keep my insurance i have to stay enrolled in school, but that insurance is not the best and i have become responsible for many medical expenses. fortunately, after appealing some of the bills, they have been reduced - but that has taken a considerable amount of effort, phone calls, letter writing, and organization.
not everything has been medical debt stress however. i’ve also received free services - everything from massage to yoga to therapy and consults with other doctors - that i appreciate. originally i felt bad seeking out these services, but i’ve come to love them. anything that makes me feel better and allows me to save money is positive.
for me, being a student with no income makes everything that much harder. i have learned to discuss this with my doctors to make sure the more expensive tests and treatments are absolutely necessary before i am asked to pay for them, and i have no problem with doctors selling me as “charity case” if that means i can get the tests for free or a subsidized price.
January 28th, 2010 at 9:32 AM
I am a little embarrassed how [relatively] good I had it as a cancer patient, especially financially: insanely comprehensive insurance coverage, a job (ok, grad school) I could walk away from without looking back, and a husband with a paycheck that could support the three of us. I would occasionally log into our insurance’s website to make sure claims for the big procedures had been covered and that’s when I would see the $$$ staring me in the face with PAID stamped after it 100% of the time.
And this is why I am completely behind universal health coverage, because if we didn’t have the insurance we did, we would be as close to broke as a person can be without losing their house. I think that health care is a right, not a privilege, because one can’t have life/liberty/happiness if they have to choose between chemo and the mortgage (or don’t have anything left for either).
January 28th, 2010 at 10:16 AM
Honestly, I would say the money part of cancer has had more of detrimental impact on my life than the cancer itself, as its the money issues, and all that gets tied up with it, that tends to cause the most stress.
It can be looked at in different ways. Insurance, and finding some that is affordable is a pain. For money reasons I went straight from undergrad to law school so I could stay on my parent’s insurance to cover costs. I’ve started to have to chose doctors based on whether or not I can really afford to see the best, or if I can just see someone cheaper. I’ve also stopped doing certain follow-ups for things that aren’t necessary to save the extra 1-200 dollars each year. (nothing life altering, mind you, just check-ups on corrective surgeries)
Right now, I’m financially reliant on my parents. I’ve moved back home, not because I’m sick, but because I can’t afford to live otherwise. I take care of myself, but Mom still picks up the medical bills and expenses. I think she sort of has a mentality that I didn’t make myself sick and its the only thing she can really do to take care of me.
Cancer and money also has a way of “shading” over my morals a bit. I’ve pulled the “cancer card” once to get a grant. It was an Alumni scholarship, 10 grand for a year to go straight to tuition. I slipped in a mention of a cancer group on my resume, which someone picked up on in the interview and I just went with it. Turns out almost every person on the panel knew someone close to them w/ thyca. I got the money. I like to earn things on my own merit. I bust my butt on a regular basis for everything I get in life, and there just seems something shady about using cancer like that, as sort of a free pass.
January 28th, 2010 at 11:15 AM
I was diagnosed with rectal cancer in August 2009 and received the call from my doctor while I was at work - my last day at work. I had given my notice two weeks earlier, where I’d worked for over 9 years. I had finally had enough at my job (I worked for dysfunctional people) and decided that I was going to give freelancing a try (I’m a web designer) and had plans to start another small business with a friend. That all went out the window as soon as I heard “you have cancer” from my doctor.
I’m still unemployed. My COBRA payment is $500 a month - my sister pays it for me. I had to take a loan from my 401K plan to pay my bills but that’s nearly gone. My boyfriend works seven days a week to keep us going, but we can’t do that indefinitely. It’s been extremely difficult and scary. I’m not ready to start looking for a full-time job because I’m still recovering from my surgery and still going through biopsies (I’ll be getting biopsy results tomorrow and we are, of course, hoping for good news). My doctor’s have recommended genetic testing as well and that could bring with it more surgery.
People in this country who don’t want universal health care clearly aren’t dealing with a life-threatening illness nor are they trying to figure out how to pay for their insurance. They must not believe that they, too, could end up in my shoes. Five months ago I was a vibrant 46 yo woman with plans to start my own business. That all changed in the blink of an eye.
January 28th, 2010 at 5:26 PM
J - In reading your comment, I wanted to make sure that you are aware of Michelle’s Law, which was passed last year and has just gone into effect. It makes it such that insurance companies cannot kick a student off of insurance if the are leaving school on a medical leave of absence. Few insurance companies make known this new law and your options within it. If you want any more information about it you can contact the Cancer Legal Resource Center and they should be able to advise you on it. It stinks to have to go to school during cancer just to maintain your insurance.
Karen - Thank god for your sister. I wonder if there are statistics on how many Americans are making health insurance payments only based on the ability and generosity of family members. Your phrase blink of an eye really struck me. It takes a blink of the eye to change your world, but such long, hard work to build it up again. Hang in there!
Robin - I hear how pulling the cancer card and mess with your sense of merit. I have erased those feelings by telling myself that few things in our country are actually based on merit. So much of where people go in life based on connections, finances, and random preferences and choices made by other people. That’s not to say that hard work isn’t important, but I think it is rarely rewarded. (How palpable is my cynicism?) I’m right there with you hoping for the day when you can ditch the cancer card and get back to knocking people’s socks off with your sheer talent and efforts alone.
xo
Kairol
January 28th, 2010 at 6:36 PM
Well, if by “impacted” you mean “beat to pulp with a baseball bat” — yes.
Even with insurance, my husband and I were bankrupted by cancer.
January 29th, 2010 at 12:07 AM
I have been (so far) incredibly well-provided for by my insurance. I got my cancer dx while working for a major pharma company, and had tolerant managers who made it possible for me to telecommute on chemo days and work from home when I was too fatigued to drive. I’ve worked for them for 24 years (the first two as a temp), and they also make up the difference between short-term-disability pay and my full salary.
Even the worse of my two insurers (I’ve been covered by two different companies since dx) covered *most* of my expenses. It was only when I started making regular trips to NYC, and having most of my scans there, that company #1 showed its true colors and began denying legitimate claims. It was then that I discovered how dealing with insurance, getting approvals, fighting denials and getting checks into the right hands could be a full-time job. At one point I owed MSKCC a year’s pay - but finally, after switching to an insurer that covered me both at home AND downstate, I was able to get the hospital and physicians’ billing offices to settle on a payment amount.
I’m being laid off at the end of this year (yep, happy holidays to me.) I’ll have *just* turned 55, and I qualify for 13 months’ severance with my insurance costs held at employee levels throughout. I will be eligible for retiree-cost health benefits when my severance runs out. I’ve run those numbers about a gajillian times. Although losing the job doesn’t scare me at this point, the idea of having any issues with my health insurance is a constant worry. On paper it looks like I’ll be ok - but anything could happen in the next 11 months.
January 30th, 2010 at 6:46 PM
My wife and I have definitely been affected financially by cancer. I was diagnosed with thyroid cancer at 24 while going threw seminary. We did have decent insurance, but the copays killed us. We’re still cleaning up the mess. Now, 5 years later I’m going through my second bout with it and am in a completely different place, financially. I’m a pastor now and my wife stays home with our 2 boys. But last year we took Dave Ramsey’s Financial Peace University, and it has helped us get organized with money so we’re in a better position to pay this time around.
But I still disagree that we should have government healthcare. Even though we went broke because of cancer, that doesn’t make it someone else’s responsibility to pay my bills. And quite frankly, if I was smarter and more mature I could have dealt much better with it last time. Cancer sucks and isn’t fair, but that is the world we live in, and that doesn’t mean we shouldn’t be responsible for our own care.
January 31st, 2010 at 1:13 AM
I was completely lucky. My insurance at the time was *very* good (it’s not nearly as good now, though I have the same employer). We paid copays and prescriptions, but that was all. I didn’t work through chemo, and while I qualified for short-term disability, the paperwork didn’t get straightened out until after I started working again… (If I hadn’t been able to start working again, I would have lost my job and my benefits and that would have been a mess, but I was strong enough to work 10 days after chemo ended and all through radiation.)
My husband and I are both teachers, and my diagnosis hit about a month before the end of a school year. I had no pay for the last month of school, and together we had no income through the summer (though we plan for that). Our regular living expenses exceed my husband’s income; we had about four months after the summer before I went back to work. Fortunately, we had just sold the condo that I had lived in before we got married (our 2nd anniversary was during chemo) and had made some money on it, so his income being insufficient wasn’t a big problem.
Yes, very lucky, indeed — everything was timed right … if cancer can be well-timed…
January 31st, 2010 at 2:59 AM
Regan, I am so sorry to hear that you are going through a second bout of thyroid cancer. I cannot imagine how hard that is for you and your family, and I hope that your treatment is successful.
I have to disagree with your statements regarding government health insurance, however. While certainly people should take responsibility for their own financial situations, the issue of national health insurance does not come down to personal responsibility alone.
First, health insurance coverage is often beyond the reach of even the most responsible individuals. For example, if a person has a pre-existing condition and their employer does not offer health insurance, that person will not be able to obtain health insurance. Similarly, upon being diagnosed with a serious illness, many people either get cut off from their health insurance or find out that their insurance will not cover the necessary treatments. It can cost hundreds of thousands of dollars or more per year to get treated for a serious illness. No amount of personal responsibility can prepare most people for such an expense if insurance companies will not cover them.
Second, in addition to personal responsibility, we also all have a societal responsibility. The Bible teaches us that we are our brother’s (or sister’s) keeper; in other words that we have a responsibility to care for and provide support to our fellow humans when they are in need. Developing a national health insurance system where all people - rather than just those who can afford it - have access to quality medical care when they are sick is a key step in fulfilling this Biblical responsibility.
Third, national health insurance is about more than helping individuals; it is about bringing the escalating health care costs that are bankrupting our country under control. Americans spend twice as much per person on health care than any other country in the world, while we get worse results than most other industrialized nations and more than 45 million people go without health insurance. A key reason for these disparities is that we rely on a system of private insurance that is hugely ineffecient, rather than a national health insurance system similar to those in numerous other countries that cost less and get better results.
While no system of insurance is perfect, national health insurance provides numerous individual and societal benefits over our current private sysetm in America. A national system would be more efficient, achieve better results, and will help us as a society ensure that no American is left in the unjust situation of facing serious illness without having a way to pay for treatment. It is each of our responsibility to demand that such a national system be established here in the U.S.
January 31st, 2010 at 10:36 AM
I had a really great job when I first started getting sick. Countless doctors appointments and people making comments to my boss resulted in me getting fired! That was even AFTER I’d had a chat with him and he’d assured me, that they’d support me through the cancer… I had been on a disability pension before that job for PTSD from military service, so it was just a matter of going back onto the benefits, but my god, the low income and no support from my childs’ father, made things so difficult.
Being a single mother also, there has been no other party earning income so, I have had to make the money stretch… and I find mostly that eating pasta and rices generally makes for full tummies and low cost meals.
I still struggle to make ends meet and have been unemployable for over a year now. Centrelink actually said no working!! I am hoping to start part time stuff soon, all dependent on MRI outcomes and blood tests of course!
I have not sought any help from any associations or financial aid places really, except I borrowed some money from my 2 closest friends to help with bills… now though, I feel bad that I don’t know when I will be able to pay them back.. :(
I was also lucky enough to have assistance from my boyfriends family, who bought all my goods from the hock shop for me, and they act as a hock shop, keeping my goods until I pay them back.. and that’s taken the fear out of losing the items and I don’t have repeating interest charges!!
My most frugal act? I don’t really have one, I just go without… a lot!
January 31st, 2010 at 4:01 PM
Ryan, I don’t want to hijack this blog post in a discussion of healthcare, but I will say this. I totally agree that our health care system is broken, but I don’t buy for a second that a government system would be better. Look at everything our government runs, it’s not good. And I have a good friend who just lived for four years in England with universal health care and said it was horrible. I can say with confidence, with that system that I wouldn’t yet have had my surgery for thyroid cancer, but would still be waiting in line. We need to fix the problems with it, not give it over to our government.
And your argument that as Christians, it is our responsibility is no argument for government forced care. Jesus teaches us to give and to care for one another, but not because we are forced to. To say universal health care is Christian is ridiculous. Jesus does not call us to force anything on anyone, and in fact His teaching on giving is focused more on why we give than what we give. Our church helps many people in need, but not because we are forced to by the government. Biblical responsibility was never intended to be carried out by the government, but by those who choose to follow it.
So I’m sorry, I continue to disagree with your fundamental belief that everyone deserves health care provided by others. I’m not unsympathetic to those that cannot afford health care any more than I am those that are hungry, homeless, or alone. But that doesn’t mean our government should or could give it to all effectively.
January 31st, 2010 at 8:48 PM
I am 43 currently and self employed with employees. I love my work. I am thankful I have it cuz it keeps my mind off things… it’s my livelihood, hopefully permanantly. I often work when i dont feel well though, but that’s just life. I started my biz cuz I wanted flexibility over my work hours. i have this only sometimes. I dont have to ask to go to a drs appt, but at the same time when you work for yourself, you typically get to choose which 70 hours a week you work….
Since I went on disability when I was 34 for epilepsy- I didn’t work for quite some time because I was too sick, so once you go on disability insurance, then when you try to buy it as a business owner, your premiums are just not a wise financial decision. So I just saved and saved and saved so I could self-insure. Between the epilepsy and the thyroid cancer, I am very financially conservative. I make sure I have 1 year of salary in the bank in cash. AT ALL TIMES. Because I realize that at some point, I may need this. This is how I take care of myself….it gives me peace of mind….self-insured disability. It means I forgo things like vacations and other fun things sometimes. Peace of mind knowing that I have a cushion is more worth it for me.
For health insurance I pay $560 a month. It goes up each year about 20/35 percent. I pay another $75 a month for meds. My epilepsy med is non generic and currently there’s no armour thryroid avail, so that’s another expense for compounding.
I am thinking about investing in a local alternative thyroid guy to see if I can get some of the fatigue under control. That’s a question of vacation or apts with him and supplements. I guess it will be a stay-cation.
In Massachusetts, we are one of the few states with protection from a pre-existing condition, for the time being anyway. I have never been without health insurance since I was off my dad’s health insurance after college. When between jobs, I bought into COBRA. Being without health insurance has never been a risk worth taking for me, even before the illnesses started.
When I was housebound with epilepsy, I spent nothing, cuz I couldnt leave the house, but basically disability insurance only covered rent and food anyway. Thank goodness…. Right now, business is good and my health is holding. But still I save as much as I can, because you never know. I want to make sure I am OK. I have myself only to rely on financially.
everyone should have health insurance and access to good care. we pay it one way or the other.
January 31st, 2010 at 10:29 PM
Regan - You’ve got my strong permission to hijack! Honestly, I can think of few discussion that are better to have on my blog than ones about healthcare; it is probably the issues that most affects young adult patients and caregivers. I think the conversation between you and Ryan (the R&R discussion) is a great one because it is an intelligent conversation that shows many sides of the issue. My question to you based on your last comment is that if individuals do not deserve healthcare provided by others what then is the best way you see for them to go about obtaining it? I have met scores of cancer patients who are very financially responsible people but are not on their own able to pay hundreds of thousands of dollars for their cancer care. What would your solution be to these people, many of whom are average Americans, hence making around about $47,000 per year for a household of four, while trying to pay off their college loans and saving to put their own kids through school as well.
Tabstar - You have been to hell and back. Is it fair to say back or are you still in the hell of it all? I ache for what you have gone through. I’m so glad you have had friends and family, boyfriend, and boyfriend’s family to help you through. But I get that is not only ideal, but not always a stable financial solution for the long haul. Hang in there girl!
January 31st, 2010 at 10:56 PM
Regan, thanks for your response. I appreciate and enjoy a respectful and vigorous debate about critical issues such as this. I have to disagree, however, with the premises underlying your opposition to national health insurance.
First, you state “look at everything our government runs, it is not good.” I respectfully disagree. With regards to health insurance, the most effective, efficient, and popular health insurance in America is the government plan - Medicare. Similarly, here is a chart showing how Americans spend twice as much on health care per person yet have lower life expectancies than do people in virtually every country that has a publicly run health insurance system. http://blogs.ngm.com/.a/6a00e0098226918833012876a6070f970c-800wi
Looking beyond health care, government provides many of the basic benefits of living in America that we take for granted.
Like breathing clean air? Thank the federal Clean Air Act.
Like having safe drinking water? Thank the Clean Water Act, Safe Drinking Water Act, and taxpayer funded water treatment plants.
Like having a safe food supply? Thank the US Dept of Agriculture and Food and Drug Administration food inspections and safety standards.
Like having your house not burn down? Thank government mandated building standards and taxpayer funded fire departments.
Like having access to the best drugs and medical devices in the world? Thank the federally funded National Institutes of Health, Centers for Disease Control, and National Cancer Institute
On the flip side, the free market brought us the economic collapse that this nation is still suffering through, the Savings and Loans scandal of the 1980s, and customer service departments at your local telephone and cable companies.
This is not to say that government is all good or that the free market is all bad. Instead, the point is that government can and does provide many good services that we all take for granted including health care for Americans over the age of 65.
As for whether it is appropriate to “force” people to do things, by being a member of a democratic society we all agree to shoulder the burden of societal responsibilities that make us all safer, healthier, happier, and richer as individuals and as a society. We “force” people to pay for the roads that we drive on, the police and fire departments that keep us safe, the schools that educate our children, the military that protects our borders, the public health systems that keep us healthy, and the court system that mediates our disputes. Each of these are things that cannot be achieved by individuals alone and, isntead, are most effectively and efficiently achieved by citizens coming together to jointly undertake actions that are critical to soceity. That is what government is and it has made us a stronger nation. If you doubt that, try drinking the tap water in Mexico or settling a dispute peacefully in Somalia.
The question then is whether health insurance is one of the areas in our society where government should have a major role. I believe it is for two reasons. First, we have a moral and ethical duty to ensure that anyone who gets sick has access to the best medical care available regardless of their ability to pay. Government is the only way to ensure that this duty is fulfilled. Second, real world experience in both other countries and with Medicare in the U.S. shows that government run health insurance is more efficient, effective, and popular than private insurance systems. By not having a national health insurance system, the U.S. is both holding itself back economically and failing in its ethical duties as a nation.
Finally, you share my sympathy and concern for those who are sick yet cannot afford health care. I ask you then how can we help those folks without government? Medical treatments often cost tens to hundreds of thousands of dollars per year, which is far beyond the reach of personal charity. The simple fact is that government is the only way to address the ethical disgrace that is 46 million Americans without health insurance and individuals going bankrupt due to illness.
January 31st, 2010 at 11:57 PM
Thanks, Kairol, for permission; and thanks for your book. I just found it and read it last week after having my right neck dissection, and loved it. To answer your question, I don’t have all the answers. I think there are ways to make health insurance and care more affordable short of going to the government. I think needless litigation needs to get under control, which would control the amount doctors and hospitals must pay for their own insurance for malpractice and liability. I think we should have more competition in the system like being able to go across state lines for insurance coverage. While I live in Iowa, the best prices for life insurance for me came from Massachusetts. Why can’t we do the same with health insurance? I think there are ways to control the rising costs for this care. I am one of those that you mentioned that makes average income with a wife and two young boys. I think a real question for any of our country’s leadership talking about this issue is a definition of “affordable.” I’ve heard people from all sides including the President talking about having “affordable” healthcare for all Americans. I don’t know about you, but that word means different things to different people. I wish I had the answers for everyone, and I really do want to see all of us able to have access to the treatments we need. But there is no evidence whatsoever that our government would be capable of providing it for all of us.
February 1st, 2010 at 12:10 AM
Ryan, I didn’t see your response when I replied a minute ago. Thanks for all that great information but I still disagree. For one, I think in most of your points, you’re talking about things that are not organized and run by the federal government, but by local or state governments; such as fire departments and roads. And I completely disagree that the free market led to our current problems. In fact it was our federal government that required banks to lend money to people that couldn’t afford to borrow that has led to our current banking and housing crises. You can blame Congress for that. I too definitely enjoy these discussions, but doubt we’re going to change each other’s minds. I believe that we live in a fallen world, which means things happen to us that we don’t deserve. And I still believe that I am responsible for my own well being, and appreciate the help from friends, family, church, and even strangers that has helped me financially get through my battles with cancer.
February 1st, 2010 at 10:38 AM
Regan: “Look at everything our government runs, it’s not good.”
Why do you hate our troops? That’s a potshot, of course, but you do have to square your antipathy to the federal government with the fact that they run the military; is the military “not good”? And how?
Still, you may be right that there is no evidence that our government is capable of providing health care for all of us. The problem is that there is abundant and overwhelming evidence that the market, charity, and personal responsibility are totally incapable of the same. If, after twenty years of government-run health care, the results are the same or worse than our current system, then we would have evidence that the government cannot run health care. But right now all we have is evidence that what we have cannot do it, plus lots of evidence that other government’s successfully run their health care. I spent a year in Britain, and the health care was quite good - and more to the point, affordable, even though I was not a citizen of that country. I also got several years of care directly from the National Institutes of Health - “the federal government” - and it was the best in the world.
I also believe we live in fallen world, but it is our duty as Christians to help one another - through any means available. You may not like government, but I see it as simply another means for us to help one another. And a great many Christian denominations and religious leaders have endorsed the notion of universal health care, too - so this is not my radical interpretation of Gospel. I suppose you have some Biblically-informed explanation as to why all of them are “ridiculous”? I am very interested to hear it.
I fear you are approaching the question all wrong. You start from whether or not the Bible says everyone deserves health care - and, of course, it doesn’t, not in so many words. But the Bible does say that we are obliged to help anyone and everyone in need (and the parable of the Good Samaritan is fairly specific to health care, I should think), and so anyone in need does have a right to expect that we will help. It should not matter to God or us whether that help goes under the name of government or charity; we should feel more compelled by our duty to God than any pressure the government can bring to bear. I don’t doubt for a moment that a great many Christians in this country want to help their fellows in need; the problem is that the organizations of charity are simply not up to the task (remember that more than a few charity and religious-affiliated hospitals have been sold by their churches to for-profit corporations). The only institution capable of delivering the help these people need is - love it or hate it - the federal government. And I know it doesn’t matter at all to the person in need whether their help comes through charity or government.
February 1st, 2010 at 11:32 AM
I’ll be brief: Started treatment in October 09. It is now Feb 10. I have racked up $6000 in co-pays, complementary treatment, second opinion fees. Treatment goes until January 11.
I am middle class enough to not qualify for any grants or aid. I see a fundraiser in my near future.
February 1st, 2010 at 11:39 AM
Hello, My job was taken from me. I lost all financial security. I was hired with their full knowledge that I needed 2 weeks off for the thyroid surgery. Before I went out of work they had decided that I ‘ wouldn’t’ be able to handle the job and the cancer. I was discharged the day I came back. All my staff was horrified but I was still out of a job. I did get a severance package which is now gone, and have been strong and well and energetic since week two, and looking for work.
Has anyone else had to find new work after cancer surgery?
And hints would help. I know the laws, but there are ways that employers get around them. I am also 57 so it is a double whammy.
Ellie
February 1st, 2010 at 11:48 AM
I’m with Chemobabe. I’ve been at this for about a year and I’ve been able to rack up about $6,000 in co-pays alone. Second opinions? I went to at least five different doctors and they were all wrong. One even performed surgery on my nose. Those doctors were paid and I never got my money back. I’m personally tired of hearing about tort reform with the whole health care debate going on. Ever tried to go after a doctor in the state of FL? It’s next to impossible. Tort reform’s a joke.
In the mean time, I’m a hard working, tax paying citizen who can’t afford the current system and isn’t even allowed to shop around in the private industry. I don’t care if we have a private industry or a government run system, just as long as it works. All I know is that the debate is getting old and the problem isn’t being solved.
In the mean time, we have one portion of the population yelling about guns and freedom, while thousands of people are fighting cancer every day, all while worrying about how to pay for it, rather than focusing on what’s really important: getting better.
February 1st, 2010 at 11:52 AM
I think like most people here I avoid the 800 numbers when they show up on the caller id. I have great insurance and I still have owe lots of money to doctors. I have a theme song Everybody Wants Some, seems like they all want more than I can give them. One doctor said that they would like 100 dollars a month. I said I would like to not live in my car. I think that some people should try to swallow their pride and if people want to do a fundraiser or something for the patient they should let them do it.
The hardest part is that once when you are done with your treatment people just assume that everything is fine, while you are still dealing with money issues and survivorship. For me survivorship is harder than treatment. If I actually had the money that I owe all the docs hospitals etc and I didn’t have those bills to pay I would have a nice brand new car.
February 1st, 2010 at 11:57 AM
Chemo Babe and Rebecca, Maybe Regan can help you guys pay off your combined $12,000. Sounds like he has a good plan for how individuals can help each other pay off medical bills. (I had to infuse a little levity here. No hard feelings Regan I hope!)
Ellie, It sucks to have cancer and be without work at any time but I’m so sorry it is striking you in this economy. The best pointers I have are: 1. Differentiate between long vs short-term goals if you need to. Is there a job you can get now that might not be your ideal but can get you through till the economy has an upswing?; 2. Find a good way to portray on your resume and your interviews a reason for your job ending that does not say “terminated because of cancer.” A truthful way - never good to lie in a job search; also good to not announce that you had cancer.; 3. Can you work with a career counselor (non-profit) who specializes in people with disabilities?
Mel, What you said sounds so familiar to me. When I was traveling and conducting interviews for my book, the most common theme I heard that life after treatment was the hardest part of cancer. The reasons were many but a lot of people feel the horror of this disease when the bills start pouring in and piling up. Ask you doctor’s office if you can pay $10 per month instead. Maybe they will tell you to go to hell…. but I have heard that if you can start to pay them something, anything then they stop calling you as much, but yours on the back burner, are glad you are making some payment if even a small one.
February 1st, 2010 at 12:10 PM
I look at my situation in two ways. One: INCREDIBLY lucky and grateful to have a fantastic job with a great PPO health plan. 100% coverage for the whole family. My cancer treatment (surgery, RAI, scans…) has been almost 100% covered, with the exception of some co-pays. Also, I had a child in the NICU for 5 months who later had open-heart surgery. Call her the multi-million dollar baby before age 1. Covered. Because she is disabled, she also qualified for supplemental Medicaid, which we are now dropping because she is *thankfully* doing well.
Here’s the other way I look at all this: I would LOVE to be able to spend more time with my children and work part-time. I can’t. My husband free-lances and with our lovely pre-existing conditions, there’s no way we would ever be able to get private insurance. We wouldn’t be able to afford paying into COBRA.
I see both sides of the health insurance argument. Let me also add to the pot that I grew up in Brazil, a country with universal health (in theory). The waits for simple appointments are so long (nevermind more expensive procedures) that anybody with any kinds of means shops privately for insurance.
February 1st, 2010 at 12:32 PM
There’s a competition on the radio that pays bills that I registered for.. and I do hope that someone, one day, might dob me in to one of those places that says “oh wow, you’ve had it hard, here’s some help” but those things never happen and unfortunately the government only pays for so much..
We are all so very much at the mercy of our finances, and although they affect us sometimes more than anything else, helping other people through talking, supporting and loving is sometimes more beneficial than anything else on earth. *hugs*
February 1st, 2010 at 11:37 PM
There are many countries with socialized medicine where it works really well. Whenever someone wants to point out how it doesn’t work, they point to England and Canada, as if they’re the only countries in the world with socialized medicine.
I’m not a huge fan of government, and often I think they have their own best interest ahead of the country, but it is criminal that one of the richest countries in the world — full of arrogant people who will tell anyone and everyone how great it is — would let its people die of preventable and treatable diseases because they somehow don’t deserve treatment.
February 2nd, 2010 at 2:22 AM
H Lee D - You raise a good point that there are many other countries who engage in socialized medicine where citizens, when polled, are very happy with their health care. People often point to Canada or England saying they’d have to wait for months for a doctor’s appointment. Well guess what? Germany has socialized medicine and their wait times to see a doc are shorter than in the United States. (We are now up to an average 3 week wait to get in to see your doctor. And 38 days to get a suspicious mole checked. The last time I tried to schedule a gyn appt. I had to wait 6 months.)
I also think it is sad that we brag about how fast we get to see a doctor compared to other industrialized countries with socialized medicine, but we never bother to mention that the category in which we blow these countries out of the water: 51% of citizens in the United States have not seen a doctor or gotten a prescription in the last two years because they could not afford the cost. No other nation is even remotely close to us in this statistic.
This past fall I was a guest on Fresh Air with Terry Gross along with a young adult cancer patient, Iva Skoch. She lives in the US, and had great health insurance but returned to Prague for her healthcare because it would cost less with better service and the same outcomes. (She’s still a citizen on the C.R.) her story is fascinating. If you want to check it out - just click the blue NPR box on the right column of this page.
February 2nd, 2010 at 3:13 PM
When I was diagnosed with thyroid cancer, I was lucky to be employed full-time by a state university and on an excellent HMO plan. I still had to cough up a $250 co-pay for the surgery (I had to charge it) and the usual $15 to see the doc and for prescriptions.
But now, as I ponder my post-cancer life as a single woman (no hubby’s health insurance for me to be enrolled on), I see no way for me to go to graduate school full time or start my own business due to the health insurance dilemma. How is that fair? America used to be about possibilities, that we could do anything. Is that access now reserved for those who are healthy, well-off or have some other access to health insurance?
Kairol, I’d love for you to write a post about post-cancer life, career choices, etc. Not only because of the health insurance dilemma but for the other questions about the direction of our post-cancer lives that come up. I’ve consistently asked myself about the utility of absorbing textbooks on thyroid cancer, for example.
February 2nd, 2010 at 7:53 PM
Courtney, as a business owner and also a single gal, I urge you to get creative in going to grad school or starting your own business. I started a business when I was quite sick, but I decided I wanted to do it, could do it, had no choice but to succeed, But I was also smart about it.
Not having health insurance? Can’t you join a group that would help yuo buy it? if you have no lapse in coverage, in your state can you still get private health insurance. It’s expensive, but doable, you just plan for it as part of your financials.
Ideas: How about going to school part time? If you are at a university, can you take classes there for free? Or another option, how about working part time and starting a business part time. That way bills are covered as you embark on your dreams. It’s not an all or nothing proposition. I have had cancer, have epilepsy, run a business and pay for my health insurance. Oh and I am not married.
February 14th, 2010 at 7:50 PM
When I was diagnosed with ovarian cancer I was very sick with many ruptured cysts. After missing several weeks of work, I did not lose my job but I lost my insurance. My job is in sales, not a high paying job, and the insurance was mediocre, but at least I had some….but I lost it after missing work due to my illness. No paycheck, no insurance, no sick pay. Six weeks later I had a complete hysterectomy, and the biopsy showed NO CANCER! That was such a relief, but at the same time as this, I was told to go get a breast exam…well, the mammogram showed a mass in my breast which DID turn out to be cancer, and I had to have a large lump removed from my breast.
After all was said and done I had lost about 6 months of work. My insurance was gone. I was so sick during this, that my family drove in from another state to help me. They talked to Financial Aid at the hospital, and I was enrolled, recieved Medicaid and was in a govt. program called “Take Charge” for the Breast Cancer. These programs saved me…if not for them, I would owe thousands more than I do now. I STILL owe thousands of dollars that I will never be able to repay because it is just too much for me to carry along with helping my kids through college, mortgage, car payments, electric bills, etc, etc….now that I am free of the cancer I have been dropped from medicaid and ‘take charge’, so I can no longer afford to go to the doctor…and I have Graves disease with very severe symptoms that cannot be relieved now.
I do not necessarily agree with the health plan the govt. is working on at this moment…a thousand pages is just to much to understand, and there is way too much pork, not to mention the states that hijacked the whole thing for money. But at least Obama is TRYING to get health care fixed and GOD KNOWS it NEEDS FIXING! The cost of medicine is out of this world and I shouldn’t have to pay one hundred dollars a month for my graves disease medicine. I have had to go without my meds now for several months, and I’m sorry, but that is not fair. I work for a living and I should be able to get my medicine for a decent price. It sucks that if I didnt work AT ALL, I would get my meds for free, but since I work, I am screwed!!
No matter who you are, you ARE a human being, and EVERYONE should have the right to see a doctor when they are sick. It should be MANDATORY that any and everybody should have health care. If you dont think so, then try walking a mile in their shoes…you would change your mind really fast IMHO. Thanks for listening…good luck to all of you!
April 27th, 2010 at 12:10 PM
That is so true. Wish all you want but until you put actions behind it you’re getting nowhere!
December 6th, 2010 at 4:13 PM
This is the first time I have actually participated in a forum or blog. My husband was diagnosed with brain cancer in late 2007. At the time he was in his last year of grad school, in fact he was in his internship year. We were very blessed to be greatly supported economically by friends, family and community as they heard of our struggles. At the time of his diagnosis I was 6 months pregnant and giving birth to our 3rd girl and felt the pain of a somewhat certain future for our little baby girl that would loose her father. While cancer is of course an uncertain road, the stats online we have been able to decipher say that 50 % make it to 10 years. While we have confronted that reality emotionally and spiritually, I am more uncertain on how to navigate a future like this financially. I have during our 11 years of marriage been a stay at home mom, and always wanted to be. I realize that I undoubtedly will need to be a full time provider for my family. Here are some of my concerns; how can I be there for him through the different stages of cancer to care for him and still be the provider without loosing insurances etc.? How can we make best of the years we have together, and still be able to instead of turning to everyone else be self-sufficient?
December 6th, 2010 at 4:47 PM
Hi Shasta,
I’m so glad you’ve taken the time to leave a comment here. Your concerns sound practical and daunting. The questions you are asking make sense and it seems it would be so helpful for you to get some expert answers from a financial planning perspective.
The American Cancer Society has a series of booklets called Financial Guidance for Cancer Survivors and Their Families. You can download them at cancer.org or you can call ACS at 1-800-227-2345 and they can send the booklets to you for free in the mail.
Also call the Patient Advocacy Foundation (800) 532-5274 and ask for a case manager. (It can take a long time to get through and may take sometime for them to return your call, but stick with it!) A case manager can help counsel you about how to plan ahead for your future. It is really smart that you are asking these questions now!
The tasks of being caregiver to a cancer patient, mom to three girls, a wife with a meaningful marriage, and a full-time bread winner seem like a lot to stuff into one person… you. It may be possible to do this all, but it sounds impossible to do this all by yourself. Asking for help, whether financial or practical things like childcare, can get really tiring after a while. When you are dealing with prolonged illness, the desire to be self-sufficient can really kick in.
I think about that phrase ‘To everything there is a season.’ The season of asking for outside help might be a really long one for your family. Remember that the people who love you want to help you. That it brings them joy and pleasure. Remember that grants and financial assistance exist for people in need and if you are one of those people, it is okay to accept that help. Remember that if the time comes when your husband can no longer take treatment and if he reaches the final stages, hospice is a wonderful, free service that can often be employed long before death. They can help in so many ways by providing free supplies, respite, and nursing care, all of which allow the caregiver to spend more quality time with a loved one.
Hang in there and feel free to contact me anytime. You are not alone in this huge and challenging equation. I’m glad to help you brainstorm in anyway I can.
All my best,
Kairol