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THE ECONOMY OF HAVING CANCER.

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

Hi Everyone,

I started my cancer journey only 2 months ago, have a great PPO insurance and now a secondary insurance costing me $700/ month, but I already accumulated about $4000 just in copays. I still have surgery and chemo and who knows what infront of me. I'm lucky because I can still work and make good money as a dentist, but I'll be on disability a lot and I have no idea how things will be then with all my other bills, mortgage, child support etc.

Many of you had many chemos, major surgeries, alternative treatments even abroad and I'm wondering how this effects us financially. How do you handle the medical bills, copays, do you get any help from any institution or financing companies. If you have insurance, how does it work for you and what do you expect when the new health care reform kicks in in October.

Your input will be appreciated,

Laz

janderson1964's picture
janderson1964
Posts: 1609
Joined: Oct 2011

I am very fortunate to have good insurance and work for a good company. I have accumulated well over a million dollars in gross bills and have paid roughly $25k out of pocket. Now that is over 7 1/2 years with multiple surgeries treatments scans meds. Hopefully you wont have to face all of that. I also worked most of the time. My company paid for the rest and we own a businees as well which has helped. So i am the exception in many ways.

LindaK.
Posts: 319
Joined: Apr 2013

I have found it overwhelming thinking about money during my husband's 8 month (so far) journey.  While we have excellent insurance, the co-pays are out of this world and the added prescriptions, hospitalizations, television fees (outrageous fees but necessary for my husband's sanity) doctor's visits, followup visits (he has 8 doctors now), OTC meds for constipation, blah blah blah.  While I did put money into my flexible spending account (pre tax) at work, since he was diagnosed in mid December, the amount was already locked in in early November and couldn't be changed.  We have used up all the money I put away for the entire year alredy in 6 months.  While I handle all our bills, I try not to worry about it too much.

I have reached out to some cancer groups and almost felt like a begger, and btw, turned away by every one of them.  I went through a 20 minute phone interview with one of the cancer groups and then was told "There's actually no money left in this fund" I was humiliated, I sat here and cried. I also contacted our local ACS (since a co-worker told me they give out gas cards during treatments) to also be turned away and told "We don't do that anymore, we only offer rides" Well, we have our own cars so we don't need rides.  They just ended the call, didn't offer anything else.

I have been contacted by an angel who almost anonymously gave me some money.  I have never before been in a situation like that and, while so thankful, very humbled.  I don't think I have ever asked anyone for money since I've been a working adult so I was quite surprised by their generosity.

I have donated to the American Cancer Society for probably 30+ years and now when my husband and I need a little help, the door is closed.  I now know if you want to donate, give it to a person directly. 

I'm sorry I can't give you some good leads.  I have not had any luck with organizations I have contacted.  I also have a magazine called Patient Research Cancer Guide that lists many organizations.  I haven't found the nerve or time to contact any of them yet.

Good luck

jen2012
Posts: 1204
Joined: Aug 2012

Have had very similar experience as Linda.  

First if you are getting Avastin, sign up for their co-pay program:

http://www.avastin-hcp.com/bevacizumab/reimbursement/co-pay-card/

Unfortunately the hospital didn't sign us up until after our co-pay was met (on Jan 4th!) it would have saved us about $4700 this year.   I'm fighting with the hospital because of it - the drug company, the insurance company and even the doctor has said they should have signed us up.   They have tried to get us some funding from different organizations and i'm not crazy about giving so much financial information to our creditor...but we could use the help.   With 3 kids, it's tough to get through all of these expenses although our insurance is pretty good.   We just paid off our baby bills from the youngest born in Sept 2011 - then I had some minor surgery in July 2012, our daughter had an injury while out of state in July 2012 and our son was diagnosed with diabetes in Dec 2012, so it's not just the cancer bills that are adding up! 

Not only have we been turned down for assistance, the patient advocate told me we were turned away for the last one, because we didn't make enough money.  I started laughing and said that was the most ridiculous thing I've heard.  We make too much for some and not enough for others.   Sucks and doesn't make sense.

Here is a list that may be of help also:

http://www.needymeds.org/copay_diseases.taf?_function=summary&disease_id=276&disease_eng=Colorectal Cancer&dx=7

though I haven't had any luck with it.

LivinginNH's picture
LivinginNH
Posts: 1301
Joined: Apr 2010

 

Hey Laz,

Nope, no help with bills or anything.  Although the locals men's club gave me a free Christams Tree one year!  :)   But unfortunately, other than asking the hospital to extend the payment term, we had to pay all of the bills on our own.  One of the members on this board went to Germany for alternative treatments, but he cashed in his life insurance policy and sold a few properties - but most of us out here simply don't have a spare $500k to spend on trips around the world.  Rick didn't have that particular type of life insurance that he could cash in early, so that wasn't an option for us.  His ex-wife and kid's got a good policy payout, but I was left with nothing but hospital bills.  So, I'm currently in the process of getting my house to sell since I have no money left due to hospital.  And Rick's mom lost her husband to cancer a week before Rick passed, so now she has to sell her house too.  In fact, in order to order a tomb stone for both Rick and his Dad, she offered to sell their little sailboat for me since I can't afford the stone.

The thing is, most healthy people don't realize that their insurance is only good up until you have to stop working due to a terminal illness - then you're on your own for the bills.  If you stop working, you can try applying for Social Security payments.  We never got a chance to try that route, but others out here may be able to share some advice. 

Cancer just takes everything.....from both patient and those they leave behind.  :(

Take care,

Cynthia

jen2012
Posts: 1204
Joined: Aug 2012

Cyn - I feel guilty now complaining about that avastin bill.  I'm sorry you are in the position that you are - it's actually pretty sickening that this can happen.  People just don't realize how quickly life can change - in so many ways.

LivinginNH's picture
LivinginNH
Posts: 1301
Joined: Apr 2010

Oh no dear, don't feel guilty about anything - we're all in this together, one way or the other.  It's ok, I'll make do...  Fortunately, I suppose, I was brought up with parents who suffered through the depression, so I've learned how to make the dollars spread out.  No new clothes or anything, and I just buy cheap food like cereal,etc..  When you really think about it, as long as we have food, water and a place to clean up and rest, we really don't need much else.  :)   So I'm fine, no worries.  :)

Chelsea71
Posts: 1170
Joined: Sep 2012

Well, I'm worried. That's a very unfortunate situation, Cyn. Something seems terribly wrong with that picture. You had three really rough years with Rick and now you're stuck with only the bills. Cancer is just not happy until it completely sucks everything from us. Jen, you are right. So many people are sitting pretty right now thinking they have the world by the tail. They just don't realize how quickly it can all change. The Canadian health care system is different. We can get sick and not be ruined financially. But believe me, it has a whole other group of challenges.

Sundanceh's picture
Sundanceh
Posts: 4297
Joined: Jun 2009

Not right for either you or Rick's mom....it's so wrong when folks have to sell their house due to the disease....

There was a lady here back in the beginning.....she was deathly ill....and her house had been in foreclosure...and they were trying to take it from her before she even passed away....

She subsequently passed away before they could evict her....but her story has always remained with me on what's wrong with all of this. 

Losing your shelter (should be exempt) because of cancer should just not happen....

We're only dabbling back in the system once again and its early now....but between the last 5-weeks of appts and tests, we are beginning to amass to an already high enough total for the current event, much less the past and prior events....and funny thing is....after all of that....and we still don't know what to do with me....or what is what. 

I've spent my time and money....and don't really know any more now than I did a month ago....that's not money well spent. 

Many of us don't want any more gain.....but the issue comes down to we hate to lose what we have worked hard for our whole lives....we're simply content to try and hang on to what we've got...

Though I know it doesn't always work that way....like so many others, I wait for when it's my turn....

I've lost count on what has been spent this past decade...the numbers are staggering....just your co-pays and max out of pockets each year is enough to wreck a good deal of the population.

I pretty much figure I'll be making many monthly payments until it's all over...just like we've been doing since it all started...just can't dig out enough, before new ones topple in over the existing and old ones.

We just keep trying to pay enough monthly to allow me to get services and treatments....so they won't shut us off.

And this with company insurance.....

Cancer is never about the fight itself.....it's always the collateral damage that occurs....always has been....always will be.

That can be said from any health crisis, or natural disaster type of scenario.  

The real battle has always been fought in the aftermath of the event itself...

 

 

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

At the moment is $1,100.00 per month MORE then my income.  My house in Ohio, my little home on my half acre I lost to foreclosure since cancer and bills.  I divorced my husband so he wouldn't lose his home and filed quit-claim deed before that.  So wish I could tell you it here is an easier way, but there isn't as far as I can see.  So bill collectors call and I make less then mininum payments on bills, but that's all I can do.  

But for every depressing thing that happens sometimes I'm lucky in other ways, once I took a trip on Southwest and they were overbooked so they issued me a voucher, which I used on another trip and again they were overbooked and again I volunteered and received another voucher which I am using to go visit my daughter.  I'm hoping for overbooked again :)! We let a young man stay in our back room for trade on maintenance on our yard and remodel on our house.  I traded one of my scooters for future mechanic work, as Cyn said, we make things work.  I learned to go camping, where once if we went on a trip we got to stay in lovely motels.  Life changes with cancer, but there are still ways to enjoy it!

Winter Marie

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

I needed to hear this, thank you!

Judy

MaryCarol5's picture
MaryCarol5
Posts: 95
Joined: May 2013

I have no insurance, 5 kids (single) and haven't been cleared to return to work for various reasons.  I have discovered that receiving government assistance is difficult if you have been a productive member of society and paid taxes your entire life.  Plus, having  a secondary education seems to halt assistance as well.  It is really backwards.  The money that the leaches of the community in these programs are receiving is mine, yours, and our neighbors yet we are not worthy of assistance. 

BUT, I feel like there is no pricetag for LIFE and whatever the bills are they are.  I only have minimal assets to have taken from me so they will get what I can give but hopefully I will have a long life to make those minimal payments. 

MC

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

"I will have a long life to make those minimal payments."

Amen!

Laz

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

Until you are there, people really don't understand the financial hardship cancer brings.  It is just horrible.   After George died I was left with a financial nightmare, just like most people on this and other cancer boards.   I have an estate attorney who is untangling everything and all will work out in the end but many, many, many are not so lucky.

Also, what people may not realize until they are in the situation is that in many instances, a life insurance policy is an asset of the deceased and therefore goes to the estate (not the family) to pay off outstanding debt of the deceased such as medical, etc.

I did some general figuring a few months ago and figured our out of pocket for co-pays, medications, and day to day stuff directly related to his cancer was in the area of $70,000.00 over 3 years.  Any money we had took a direct hit.

The only advise I can really offer, which has been talked about in the past, is that when signing consents, etc. regarding an individual's treatment, tests, etc. that only the patient should sign, therefore, only the patient is responsible for the payment/debt.  It cannot be passed on to anyone else.  Hope this makes sense.

I don't say this to scare anyone or make them feel guilty so please, please, please don't feel that way.  Our co-pays and out of pocket was the be best money we ever spent.  I wouldn't have given up one day with George for any amount of dollars.  It is simply reality since the subject came up.

I think of each and every one of you every day....

Take care - Tina

 

fatbob2010's picture
fatbob2010
Posts: 392
Joined: May 2012

When things are going well there are hands out all around.  They ask for help to help those that are less able.  YET, when it is our time it seems they are of no help.  

Sadly, I believe, that most of these organiztions are self directed and not honorably intended to help.  

After learning how little of the donation actually went to helping more than just THEIR expense account.  Quit giving to any of them quite a few years ago.

To say the least, I am a little frustrated.  Definitely very jaded.

Art

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I have a payment plan with everyone... The medical oncologist, the hospital where I had my CT scan, now the specialist, and the University of Maryland where I am having surgery on Monday.  I pay what I can...and the rest I put on a spreadsheet to keep track.  I am hoping to be able to pay everyone off by the end of the year before the clock resets and the deductibles and bills start rolling in again.  I have been creative...bartered baby sitting with a neighbor so that we did not have to pay for a baby sitter when we went to the surgical consult.  I have also sold some of my children's baby clothes and toys to help pay the bills.  It was difficult at first to let some of these things go...I did keep some of the most special things.  It actually was a good thing...I think...it was a cleansing process.  I did try contacting some of the same organizations...only to be told that there is no help available.  I have also been contacteangel someone who has offered to help...it was a difficult thing for me to accept that help...I have always been one to give whenever I can...never to ask for help.  I now have some hope that things will get better... That hopefully, this is temporary and that some day I may be in a position to help someone else.

But right now, to does give me some peace of mind to know that I am not alone.  Thank you everyone for sharing your experiences.

alex

Goldie1's picture
Goldie1
Posts: 251
Joined: Sep 2011

When my husband Pat was first dx'ed, he could not work because radiation, chemo, and surgery left him unable to do any task.  We were lucky that his health insurance was still covering him and our family.  I only work part-time and no insurance is available through my job. He applied for Social Sercurity Disability and got approved very quickly because he is stage iv. But, it took 6 months to receive the first check and no Medicare till 2 years after dx. After a year, his health insurance came to an end and we had to pay an outrageous amount for Cobra.  No organization would help us because we still had some savings in the bank.  Money that we had saved for retirement, went to paying bills and to trying to keep our heads afloat. Plus, we had 2 kids in college.   Pat decided to try to go back to work after one and a half years because he was so afraid we would lose everything.  I asked him if he wanted to retire but he said he wasn't ready to do that.  So, after his onc and the company doc cleared him, he went back to work last Oct.  He takes off every other Friday for chemo.  Has it been easy for him?  Yes and no. He drives a truck for a big company, delivery/pickup of some pretty heavy things. Lots of driving and all the headaches that go along with the job.  But, he does it, with stage iv cancer, and intends to do it for as long as he can because he tells me it gives him a purpose.  And to be honest, that paycheck has helped us get back on track.  Cancer has really chewed us up but somehow financially, we are still hanging in there.  Thankfully, we give a lot of credit to his employer and union, they have helped us the most these last 2 years.  Between collecting money and being flexible so that Pat has time off if needed, it really has been more than we could ask for.  

Ellen

Coppercent
Posts: 143
Joined: Jan 2012

I have been very lucky with the finances through my two year journey. I am fortunate to have a primary and secondary insurance so between the two my medical expenses have been paid. I managed to work full time through it all. I did however lose my second job which was paying for my son's education. However, I pawned and sold everything to keep us both afloat. I now rent a room and my only possessions are a bed, clothes and a 1000 beater car. But when all is said and done. I am happy and alive and all of the material things are not that important. I am blessed to be alive and spending quality time with my sons and their families. 

John23
Posts: 1832
Joined: Jan 2007

Read my bio;decide for yourself.

 

Best wishes,

John

 

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Unless I recognize the phone number.  LOL

I, too was never able to get any help from the various cancer support groups. It was always "You have too many assets............We don't do that anymore.........We don't have funds available for that type of cancer".  That last one really got to me. Cancer is cancer, for cripes sake!

Although Ron had Medicare & secondary insurance, I am left with bills which I have the privilege of paying off, as well as the funeral home, and as Cyn, don't know when I'll be able to get a tombstone. Arizona is a community property state so it makes no difference if only the spouse signed the papers. The surviving spouse remains responsible. I am fortunate in the respect that my outstanding bills appear much smaller than some of yours, but you can't get blood from a turnip, so I have just learned to do the best I can, this on top of a house payment and horrendous credit cards.

After all, I have already lost the most important thing in my life.

Luv,

Wolfen

LindaK.
Posts: 319
Joined: Apr 2013

I'm selling some jewelry I haven't worn in years, good thing gold is "up"  Makes me feel good to get rid of stuff I don't use.

jen2012
Posts: 1204
Joined: Aug 2012

I meant to come back and add - we've had luck with the hospital negotiating our balance.  So if we get a lump sum from taxes, I start calling to see who will negotiate and they typically will take 80% if I pay at once.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 449
Joined: May 2012

I guess I am one of the fortunate ones too. My husband carried the insurance, which is really good. I was diagnosed April 2012 and my out of pocket max is 2,500 and Dr co pays is 25.00. So between last year and this year we have paid about $6,000 total. I worked at the hospital and got 40% off the hospital bills. I say I am fortunate but just having cancer sucks. I would gladly give up every dime not to have this. I told my husband that I am glad I have the cancer and not him. We still have our 15 year old twins that will be going to college and need insurance and my husband is the breadwinner in our family.
Sandy :)

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

We achieved cost control with medical tourism, at home / DIY answers, CAM and off label generics. Mostly for cash, not insurance.   Which beach is that ?  If it's Hawaii, Asia has significant deals.  

The better one is at thinking accurately out of the box, the more one can stay out of the bank box.

 

 

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