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Worried about losing my health insurance

Peanut04
Posts: 2
Joined: Feb 2011

Hi,

I'm new here. I was diagnosed with Stage 3c ovarian cancer in Sep 2010. I have had surgery and everything was removed except a cancerous lymph node on top of my pancreas. I finshed my 6 cycles of chemo about 3 1/2 weeks ago. I am currently being mapped for radiation treatment to the lymph noded noted above. The radiation is going to be M-F for 6 weeks. I also have Avastin every 3 weeks for a year. I have to have my job for my health insurance. I don't have enough sick and vacation days to cover extended days off, especially every day. I am not married so there is no other way for me to get health insurance. I work for a small employer so FMLA and COBRA do not apply the my employer. If I were to get fired, I will go on state continuation for 9 months and afterwards I will be uninsurable because I have cancer. (I live in Texas)

My problem is that I am trying to work out a schedule so that I will be able to take off as little time as possible. My employer is willing to work with me, the PROBLEM is my DOCTORS. It seems like all of their other patients are retired, on FMLA, on their husband's insurance policy and do not work, on disability, etc. Because of this they have the attitude that I can take off 3 hours of work whenever it is convenient for the DOCTORS. My employer only has to make reasonable accommodations. My doctors don't seem to understand that without my job, I will not have health insurance. Without health insurance, I cannot have treatment (unless they want to treat me for free). All of this is causing me tremendous stress. I feel like just giving up.

Does anyone else have this problem? Is anyone working for their own health insurance?

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Peanut....I don't have the same problem, but I can definitely identify with your situation. My (late) husband had liver cancer and when he got too sick to work we did COBRA for as long as we could, but during that time I was frantically trying to find a job that did not have a pre-existing condition clause.

When you say the problem is scheduling and your doctors are not accomodating, do you mean, for example, that you need early morning appointments and they can only give you afternoon slots?

Can you arrange to get treatments from a different infusion center? Or can you make up the hours at work during weekends or evenings?

I know this is frustrating. Sometimes doctors seem to live in their own little world, where no one else's reality exists.

Carlene

Peanut04
Posts: 2
Joined: Feb 2011

Hi Carlene, thanks for answering. A few days before my Avastin treatment, my gyn/onco's nurse left a message for me to come in at 2:00 p.m. I called her and told her that I could not leave work at that time and asked if I could come in about 4:15 or 4:30 and she said yes. I did not eat lunch that day and got to work 1/2 hour early to so that I could leave for Avastin. When I got the to doctor's office at 4:20 p.m., the nurse told me she would have to ASK the doctor if I could still have the Avastin. It took her 15-20 minutes for her to "ask" him and the only reason he said yes is because he had been called to the hospital earlier and he was behind. I couldn't believe it! I guess they were going to refuse to give me Avastin, that takes only 1/2 hour to infuse, because it is more important that he goes home. I was told that his office hours are 8-5, and that sometimes he works until 8. When I first started chemo, I didn't get out of there until nearly 6:00 pm.

I have the same problem with the radiology/oncology. They want me to come in when it is convenient for them. They both keep telling me the "treatment" only takes a 1/2 hour. They do not consider the travel time to and from their offices which is about an hour and half -- longer if there is traffic. I have told both of them that I do not have unlimited sick days and I NEED my job so I will have health insurance.

I am still week from the chemo and I still have chemo brain. I honestly don't think I could work that long. As it is, I go straight to bed shortly after I come home.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Sounds like the scheduler and the doctor don't have very good communication, first of all. When she moved your appointment to 4:30 she should have noticed that it was for an infusion, and said something then and there if the later time would be a problem. If I were you, I would make sure, in the future, to remind her that I was coming for an infusion whenever I made the appointment.

Talk to your doctor directly about this. He can (and should) take care of the problem. My Carbo/Taxol infusions had to be done so slowly, I was there for 6-8 hours, and if they could not give me a morning appointment, there was no one there but me, the infusion nurse, and the cleaning crew when I left. The nurse in charge of the infusion room once told me that it wasn't "fair" of me to keep the nurses "back there" until 6 PM. My husband told her that we weren't the ones who set the appointments. If they told me to come in at midnight, I would. And if they were concerned about their nurses getting to leave on time, they needed to schedule me for earlier in the day. After I mentioned this conversation to my doctor, it never happened again. Believe me, if the doctor says schedule her Avastin infusion for 4:30 every time, they will. Hell hath no fury like a physician whose orders are disregarded.

Carlene

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Sorry....double post.

Rookerbird's picture
Rookerbird
Posts: 100
Joined: Feb 2011

You're not alone. I work for a small company, and have a private policy through Blue Cross / Blue Shield of Texas. It covers just me, and is $475/month with $5,000 out-of-pocket. Gotta work to keep the insurance in effect.

It's great your employers are being flexible. Kudos to them!

Being in treatment feels like being on a big conveyor belt...sometimes, it can be impersonal. Hoping you can develop a friendship with one or more of the appointment schedulers...that someone can begin to view you as a person they actually know and want to accomodate, not just a name/number. We're rooting for you.

queenieb52
Posts: 48
Joined: Jul 2009

I feel your stress hon! When I was first dx in May '09, I had just signed up for the COBRA which had been offered to me in the fall of '08 when my office closed. At that time it was $400 a mo. & I couldn't do it, but when the president signed that subsidy in, they re-offered it to me @ a better amnt ($!23.00). That was in April I think.. I had just started another job with a small company who didn't offer insurance, and lo & behold...3 weeks after my hysterectomy that office closed! I was able to keep the COBRA till the following March 2010 when I had to go on state Medicaid. Even tho I am on SSDI (because of cancer stage-I was only 52!) I don't qualify for Medicare till 24 months & that will be iffy I guess! I feel good enough to work, as I am on Gemzar- maintenance chemo now, but if I make any more money I'll lose the Medicaid! And try to find a place that offers insurance is difficult enough- much less when u have a pre-existing!! It is SOOO stressful!! II also am not married- my husband died the yr before I got sick. So insurance options are almost slim to none these days. (I could get married again- but doubt that I could find someone who wants all THIS baggage right!! Plus I was married almost 30 yrs & don't know as I will do it again) I appreciate Obama trying to get our healthcare system on the right track, but making it 'law' is ridiculous! What about people like us- who are now uninsurable? What we need is insurance that is available to EVERYONE & affordable-regardless of pre-existing.It makes me sick when I think of all the yrs we paid for health ins. & barely used it & those fat cats got fatter!!! Its a can of worms to be sure... Try not to stress to much because thats not good for you either. I agree with the person who suggested that you may need to go to an infusion center where the scheduling is more flexible. I had to leave my Dr's office after a year & a half and I miss my support there. But we gotta do what we gotta do... because it WILL get better & we WILL LIVE!! in good health... Beth

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