Health Insurance Help

Please feel free to read, share your thoughts, your stories and connect with others!
crikklekay
Posts: 23
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Health Insurance Help

Postby crikklekay » Thu Feb 15, 2018 10:34 am

My name is Crystal, and my husband John was diagnosed with colon cancer after being admitted to the hospital (12/30) with abdominal cramping and the inability to keep anything down; they found the tumor blocking things up during the colonoscopy. It has been a rollercoaster from hell, but John has been dealing with it fairly well. Actually I think it took longer for him to get used to having an ostomy than the idea of having cancer. He has always been very healthy and healed up amazingly well after surgery, went back to work just 1 week after being released from the hospital and has been working since. He took off the three days of his first chemo treatment last week, and other than some fatigue and constipation did well, and worked the rest of the week.

What I'm currently dealing with, and have been since he was admitted to the hospital, is the horrible fear he'll lose his health insurance. We were protected during the 3 weeks he was out by FMLA, but he has to maintain an average of 30 hours per week per quarter or he gets kicked off of the company plan. So far he has been able to manage that, but from all I've been reading the symptoms only gets worse with time so it may be more difficult as time goes on. Our savings is being depleated at an alarming rate due to the medical bills, and because he was admitted right before the new year which means we had to pay the max out of pocket for 2017 AND 2018. We don't make much and once our savings are gone that's it. FMLA is only 12 weeks, and we've already used 3 so it wouldn't cover even half of the treatment time.

So my first question is, does anyone have any resources I don't know of? Government programs or something? I've read of people who just quit their job or took extended leave for their whole 6 months and the only way they can manage that I can think of is either they're blessed to have their insurance tied to the spouse's job or have enough money to weather the lack of income and medical bills.

My second is how to deal with the well-meaning friends/family/coworkers who seem appalled that I'm "making him work" during chemo. I've tried explaining the insurance problem but they've just waved that away saying we could probably "COBRA-it", and I don't think they realize just how expensive that would be. Insurance on the marketplace for us was more than our mortgage, I dobut COBRA would be any cheaper, we can't afford that especially if one of us isn't working! They know we're not exactly made of money, and one of them even said we should "start a gofundme" as that's how "people pay for medical debt these days". It's so frustrating and I don't know how to deal with it. In a perfect world we wouldn't have to worry where the money for his life saving treatment is coming from, he could leave work and just focus on himself during the 6 months, and I could be at home caring for him. But this isn't a perfect world and comments like that just make me heartsick.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated with invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6 out of 22 sampled.
Ostomy surgery: Colostomy
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
2/18 Hospital with MSSA infected port, PICC line inserted
3/18 Hospital with CDIFF
Chest and Abdominal Scans Clear So Far

User avatar
O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Manila, Leyte Gulf

Re: Health Insurance Help

Postby O Stoma Mia » Thu Feb 15, 2018 2:24 pm

Welcome to the Forum and I'm sorry that you have to find yourself here.

I don't have any personal experience with navigating insurance problems, but there are other members here who have. Perhaps they will chime in later on.

Meanwhile, here's a link to a website that deals with insurance type issues:

Patient Advocate Foundation
http://www.patientadvocate.org

mhf1986
Posts: 123
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Health Insurance Help

Postby mhf1986 » Thu Feb 15, 2018 4:06 pm

Couple of ideas:

Nurse navigator or advocate at the hospital may be able to look over his work's FMLA policy and have ideas. Can he work from home? Work longer days on "off weeks"? I"m able to work 2 days a week at home (like today) during chemo weeks to help out DH. But I did have to ask and push.

The drug companies may be able to give some help too.

I was against DH going back to work at all (I wanted him to take early retirement or disability retirement) until I realized how good it is for him mentally. He enjoys it, he's good at it, and he's less of a patient and more himself. He also worries less about finances if he continues to work. He works 37/38 hours a week on off-weeks and 23/24 on chemo weeks and has been doing so for a year on FOLFOX, plus an hour commute each way. He also takes work home. So I just tell people he likes his job!

And yes, DH hates his stoma too.

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: left hemicolectomy w/perm. colostomy, CEA 114
11/16: port in, FOLFOX + Avastin; CEA down to 11 by 4/17
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, changed to CAPOX+A; CEA down to 29 in 12/17
1/18: CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin too high for irinitican, start Vectibex
6/18: biliubin down to 2, ascites mostly gone . :D

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Health Insurance Help

Postby mike1965 » Thu Feb 15, 2018 6:01 pm

It is really hard. I was in a somewhat similar situation but I was able to afford cobra thankfully. My employer was not nice and when I told them I had cancer they laid me off. You are correct cobra payments are usually pretty brutal I pay almost as much my mortgage. It is not easy but Obamacare for me is the same amount because I do not qualify for government assistance. I get better benefits thru Cobra. Obamacare benefits are not always great and cost a lot out of pocket. I love that Obamacare protects pre existing condition however if you do not qualify for payment assistance the cost is very high. One way to get full medical at no cost depending on your state is to make a less money and get med-caid. I not sure all states have this. But problem with that is you have to make very little money and than how do you pay your other bills. As others stated trying asking employer if he can work maybe from home if he gets tired. Some employers are nice and will work with you. I pray all goes well it really sucks to have worry about finances when the most important thing is trying to get healthy.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

rp1954
Posts: 1317
Joined: Mon Jun 13, 2011 1:13 am

Re: Health Insurance Help

Postby rp1954 » Fri Feb 16, 2018 3:20 am

There are a lot of cash saving skills each "generation" has to develop. Best strategies and tactics can vary with "era", illness, location and circumstances. But know this, cost and cash now require extraordinary caution as you imply your husband is stage 4 in an indifferent setting.

The more you can tell us, the more likely someone can help you. Where you live and other details can greatly alter your options for medical treatment and costs. In our case, my stage 4b wife aged out of her company insurance at 66 where there is no Medicare or Medicaid; she lives (well) by our wits, DIY therapies with generic drugs and supplements, and very careful purchases. She has a very good quality of life, where most patients like her died 5-6 years ago after spending a hell of a lot more money on harder therapies.

Re: Cobra In a different world, long long ago, Cobra benefits were often a near freebie from large employers. Gone like the dodo bird.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

User avatar
O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Manila, Leyte Gulf

Re: Health Insurance Help

Postby O Stoma Mia » Fri Feb 16, 2018 3:35 am

rp1954 wrote:...The more you can tell us, the more likely someone can help you. Where you live and other details can greatly alter your options for medical treatment and costs...

    Here is a signature template along with a link to your signature creation page. You can use your signature to give us more information about your situation.

      O Stoma Mia wrote:To create a signature, click on the link below. You can have up to 512 characters (including spaces)in your signature.

      http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

      Some items that you could include in your signature are given below:

      Signature Template
      Age & Sex
      DX: Rectal Cancer (RC) or Colon Cancer (CC)
      Tumor Location: If RC, then upper, middle or lower rectum, and distance from anal verge. If CC, then ascending colon, hepatic flexure, transverse colon, splenic flexure, descending colon, sigmoid colon, or recto-sigmoid junction, etc.
      Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
      Tumor size (in mm or cm)
      Tumor grade:
        G1: Well differentiated (low grade)
        G2: Moderately differentiated (intermediate grade)
        G3: Poorly differentiated (high grade)
        G4: Undifferentiated (high grade)
      TNM code: e,g, T3N0M0, etc
      Stage : Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
      Positive lymph nodes: eg., X positive out of Y sampled.
      Mets: Location of metastases, if any (e.g., mets to liver, mets to lungs, etc)
      Baseline CEA value (if known)
      Lymphovascular invasion (LVI) (if known): present vs. absent
      Perineural invasion (PNI) (if known): present vs. absent
      Surgical margins: clear or involved
      MSI status (if known)
      Lynch status (if known)
      KRAS/BRAF status (if known)
      Primary surgery type:
        LAR, ULAR, TME, APR, Laparascopic vs. open resection, polypectomy, proctosigmoidectory, colectomy, hemi-colectomy, sigmoid-colectomy, etc...
      Ostomy surgery: Ileostomy, or colostomy, or no ileo surgery
      Radiation therapy (if any): Chemo/rad
      Chemotherapy (if any): e.g., XELOX, CAPEOX, FOLFOX, etc.
      - - -
      NOTE: Here is a list of acronyms if you need some help in understanding the jargon typically used in signatures:

      List of Acronyms
      http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=5366&p=419139#p419139


crikklekay
Posts: 23
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Health Insurance Help

Postby crikklekay » Fri Feb 16, 2018 10:57 am

O Stoma Mia, thanks for the link I’ll look it over!

mhf1986, it sounds like our plan is similar to yours. Unfortunately he works as a shift manager in the food industry so taking work home isn’t possible. That would make this whole thing easier if it was! He handled his first round pretty well, so hopefully that’s a good sign for the rest of his treatments. His boss and the area manager are trying their best to accommodate his needs, hopefully that continues.

mike1965, I’m sorry to hear they did that to you! Corporate didn’t make it easy getting his FMLA approved but they didn’t lay him off at least. We don’t qualify for assistance either because we file married filing separately for student loan reasons. In our area the marketplace was decent for the first two years but then companies dropped out or were bought out and we ended up with just one company to choose from and the prices went up astronomically. We were so relieved when DH’s company offered him benefits at a fraction of the cost. I almost wish we had paid the higher prices, at least then his benefits wouldn’t be tied to how many hours he can work. We live in Virginia and I’m pretty sure even if he quit work we’d wouldnt qualify for Medicare, we didn’t pass the gap bill here. We’ve already paid the max out of pocket so I’d like to at least finish out the year with the current plan if possible.

rp1954, I didn’t have a signature because I had very few hard facts. I don’t know why but our Oncologist never gave us detailed information, she takes things very one day at a time. It wasn’t until yesterday when his general doctor shared the info sheet with me did I finally have some concrete data, which is now in the signature! We live in the Richmond VA area, and thankfully the goal is to cure. I want to give him every opportunity to receive the care he needs to kick this thing to the curb!
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated with invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6 out of 22 sampled.
Ostomy surgery: Colostomy
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
2/18 Hospital with MSSA infected port, PICC line inserted
3/18 Hospital with CDIFF
Chest and Abdominal Scans Clear So Far

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Health Insurance Help

Postby mike1965 » Fri Feb 16, 2018 4:57 pm

I found this link for your State on possible resources that can help. http://www.knowcancer.com/financial-ass ... /virginia/. I looked at it and they seem to help patients. I pray all goes well with your husband.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

Caat55
Posts: 386
Joined: Sat Dec 23, 2017 6:01 pm

Re: Health Insurance Help

Postby Caat55 » Sun Feb 18, 2018 12:56 am

Don't think of it as making him work, I worked through chemo and radiation and found it both manageable and an escape. Keeping moving, being normal helps keep cancer from owning you in my experience.
Insurance sucks. Speak directly to someone at his company, they may work with you, allow people to donate leave to supplement his hours.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

NHMike
Posts: 1335
Joined: Fri Jul 21, 2017 3:43 am

Re: Health Insurance Help

Postby NHMike » Sun Feb 18, 2018 7:53 am

I think that there are a lot of us that work through the chemo to maintain insurance. I took two weeks of short-term disability to recover from surgery (my manager suggested taking six) and I was working from the hospital bed to take care of some things. For us, short-term disability is good for up to three months and then we're on long-term disability. I picked the lowest level of coverage because I never thought that I'd get sick (really healthy before cancer). A co-worker with cancer talked to us about the financial and insurance stuff a while back and said that you have to go on COBRA for LTD and pay for it out of pocket and I think that it would work out to $22K/year for coverage. LTD only pays 50% of salary which would make things challenging.

Most people have never really looked at what COBRA is like (I never realized that the employee has to pay the whole cost of insurance) so your friends and family don't realize this. There are always a lot of well-meaning folks out there with suggestions that are useless in the real world. We have a forum thread where people vent about dumb things that others say about dealing with cancer. I usually work during my infusions, work from home in the afternoon and am at work the next day. It is challenging because of the Illeostomy, cold sensitivity, fatigues, etc. I can tell you that most people have difficulties with the Oxaliplatin. It varies from person to person, of course, but more people have problems with it than with just the 5FU.

I can only suggest managing vacation time, sick time (the first time I've considered taking sick time is this cancer), and short-term disability to get through this. It's worst on infusion day and the days just after. If the side-effects are too tough, ask the oncologist to reduce the dose. I'm a wimp and asked for a 20% reduction in the Oxaliplatin and a 1-week delay after the second round as I was so wiped out by the side-effects after that.

In dealing with well-meaning friends and family you need to judge their motivation and then come up with a reply. Some people are trying to be helpful; some are just looking for something to say as it's awkward for them to deal with a big shock and trial to someone they know. Sometimes you just thank them, sometimes you explain why it won't work if they are close friends, sometimes you ask for help if it's a possibility.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

User avatar
betsydoglover
Posts: 907
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Health Insurance Help

Postby betsydoglover » Sun Feb 18, 2018 1:53 pm

Here's a crazy idea.

I don't know how your husband's company works, but in many/most(?) companies, 24 hours per week qualifies you for benefits, including insurance - even 30 hrs/week is probably doable. FMLA is unpaid, anyway. So perhaps if he went officially part time for a while, then he could really stretch out his FMLA, since he could do most of his treatments / scans on the day off. Just a thought - this is what I did, although I had started part time about 4 weeks before I was diagnosed.

Just a thought. I wish you the best.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

User avatar
horizon
Posts: 1461
Joined: Tue Apr 12, 2011 10:10 pm

Re: Health Insurance Help

Postby horizon » Mon Feb 19, 2018 9:19 am

Cancer is stressful enough. I'm sorry you have to deal with these other unfortunate parts of it.

Caat55 wrote:Don't think of it as making him work, I worked through chemo and radiation and found it both manageable and an escape. Keeping moving, being normal helps keep cancer from owning you in my experience.


This is what I was going to say. Continuing to work helped distract me from what was going on in my life during treatment.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

janklo
Posts: 1565
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: Health Insurance Help

Postby janklo » Mon Feb 19, 2018 8:27 pm

Crystal,
I work in Payroll,so I wanted to clarify that FMLA is actually 12 weeks times 40 hours and it can be taken intermittently, so if your can work at least half time, that stretches out the FMLA time period, it’s not just 12 weeks. Our company must be super generous, we allow people to miss the whole period and we cover the insurance premiums.

He should be able to work though, and as people said it’s better to work and keep busy when you are undergoing treatment.

Also, you can try to have chemo scheduled so that his days off are when he’s recouping and he won’t have to miss work.

Did you know too, you can defer student loan payments if you have to—if you need that cash to live on. Interest accrues but you can deal with that later on.

Just a few tips!
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

crikklekay
Posts: 23
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Health Insurance Help

Postby crikklekay » Thu Feb 22, 2018 1:20 pm

Hello!

I wanted to thank everyone for their suggestions, especially the one about possible donation of leave and that we can use FMLA by the hour instead of by the day. I'm sorry it took so long to reply, but we ended up back into the hospital due to a staph infection in his port which spread to his lungs. Hopefully we can go home soon, and he can contact HR and see if some of these options will work for him!
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated with invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6 out of 22 sampled.
Ostomy surgery: Colostomy
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
2/18 Hospital with MSSA infected port, PICC line inserted
3/18 Hospital with CDIFF
Chest and Abdominal Scans Clear So Far


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Detox, JReittera, NHMike, PGLGreg and 30 guests