My sister has been battling colon cancer for 16 months. I would like to say that she is winning the battle but I don't think that is happening.
When she was first diagnosed in May of 2006 we were told that the cancer did not spread and that there were no signs of it after they resectioned her colon. Things looked good.
She went through chemotherapy for eight months and on March 23, 2007, she was told things were fine.
The thing about cancer is that things are rarely fine and in May of 2007, after feeling bloated and sick, she was told that the cancer had spread to her abdomen, kidneys and lungs.
We both cried when we heard the news knowing that this was a major set back. Her oncologist, a really wonderful man, told us not to give up hope and that he was going to try a different, stronger, chemotherapy drug on her.
My sister now takes six chemotherapy pills a day for two weeks and then she has a week off. When she starts the pills for each new cycle she has to go into the hospital for five hours of intravenous chemotherapy.
The new drugs are strong and she is suffering lots of side effects like hair loss, nausea, and being very tired. She never had these symptoms before. But the new chemo seems to be working (knock on wood). The nine inch tumor is no longer putting liquid in her system and all the swelling and bloating she had before are almost gone.
My sister, because she can't work since she also have severe arthritis in both hips and can't move, is on Medicaid/GHI HMO. They've been paying for everything.
Today she received the statement of payments that GHI HMO paid for the first round of her new chemotherapy. The total for the five hours of chemo was $14,845. The two weeks of pills that she takes costs over $800.00. My question is this: if someone has health insurance where they have to pa 20% of their health bill, how do they afford it?
I used to pay for my sister's insurance before she went on Medicaid and she had a co payment of 20%. I would never, ever be able to pay 20% of her chemo treatments. Never! Not every month! How do people pay 20% of $15,645 every month? And I'm not even talking about the costs of MRIs and PET Scans, all costing about $3,000. It scares me when I think of it.
Last week a doctor was telling her patient to get rid of the health care insurance she was using because the woman would never be able to afford 20% of what the chemo was going to cost her.
What is wrong with America? The Land Of The Free And Home Of The Brave is so busy trying to help other countries that our legislatures and President don't seem to notice that the citizens of the US are dying because they can't afford health care.
And while I'm at it I'll also complain about the fact that I stay home and take care of my sister. I stopped working because she needed me with her. I used up every cent of my savings and IRA to take care of the two of us. The government would send in a home health worker and pay them $20,000 a year to do what I do but they will not pay me. Instead, after 25 or 30 years of working I have to beg for public assistance. I get no money from them but they do give me Medicaid/GHI HMO, some food stamps, and they pay $182.00 a month towards my $800 rent. I get nothing else from them. Yet, they are always nagging me about proof that my sister needs me. I've sent them numerous letters from her doctors saying that my sister cannot be alone. Public Assistance is then quiet for a while but then two months later they're demanding more proof from me and threatening to take me off. I'm going through that now.
I am not having fun. I sit at home helping my sister sit up, lay down, help clean her stoma, take care of her when the side effects of the chemo is too much for her, I bathe her, I console her when she cries that she's frightened. I will not leave her. She's dying and I don't know how much longer she'll be around. She wants me with her and that is where I'll stay.
My shoes are torn and I can't afford to buy new ones. Credit card companies have sent bill collectors after me and my sister. One has even sued my sister. We have no money and yet I have to beg Public Assistance to help me out.
What is wrong with our health care system? Why can't the country help take care of people who are sick and their families are out of money because they can't work and the bills are too high? Why don't our politicians see what is going on with the citizens and why don't they care?
This is a long rant but I'm angry and hurt. I feel like the country that I've lived and worked in all my life, paid thousands of dollars in taxes to and have always done what was asked of me is now turning it's back on me and telling me to fend for myself and for my sister and that they will not help me because they are too busy helping other countries.
What about us?
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Comments: 32
Maybe even get a legal assistance attorney. We had a free clinic office in a previous area in which I lived, the attorney's didn't charge if you couldn't pay. They helped people in lots of situations get relief!
I am sending healing thoughts your way for your sister. I just went thru a bout of squamous cell skin cancer, and now I wait, too, for 5 years to make sure they got it all even tho they said they already did. I hope your sister fares well with this go-round of chemo.
I hate to say it because it can't be fun, but how about welfare, food stamps, or disability, or even medicaid/medicare depending on your sister's age? When my mother in law put my father in law into a convalescent home when he developed dementia, she had to sell half their assets. She was poverty stricken just to take care of the bare minimum of his medical bills. It's a crying shame (I'm trying to be polite!) that something like this is allowed in our country of so much!
Yeah, what about us?
They're full of it. Don't even listen, hang up on them. They should spend their time going after big companies.
collene
Colleen, thank you for your comment. Medicare pays for all of my sisters medications and doctor visits and all her tests. I cringe to think how I would pay for any portion of it if she didn't have Medicare.
We get a total of $284 a month in food stamps for the two of us and we can make due with that but the thing is food stamps doesn't pay for toilet paper, paper toweling, sponges, soap, dish washing liquid, cleaning items, and everything else that a house needs to run properly. We have to pay for those things and they do not come cheap. not cheap.
Dee, you are so right about Medicare Part D. I hear other cancer patients talking about it. My sister is only 52 so Medicaid is taking care of her medical bills. Every so often she gets a letter saying that her costs are too high but when that happens all she has to do have her primary care doctor send them a letter telling them that she needs everything. He also gives them her diagnoses.
My sister feels more comfortable with me helping her out. She has arthritis in both hips and can barley move let alone walk. She needs help cleaning her colostomy bag and is very embarrassed of it. She can't go to the bathroom herself, take a bath, get her meals, or do much of anything. She can't sit for too long and then needs help to get back into bed. Her chemo treatments are making her sick and I help her get through those times. I won't force her have a stranger help her with such personal matters especially the problems she has with her colostomy and stoma. I won't make her life any harder for her than it already is.
I do get some money by my book sales and Nutrisystem sales. I try to find jobs I can do online but there aren't many of them at all.
Believe it or not, my main pressure isn't my sister being so sick but the problems I'm having with Public Assistance and the bill collectors. I tell them all I have are books and one pair of torn up shoes that I wear because I can't afford another pair. I tell them to come on over and grab the books and shoes if they like but I have nothing else. What part of nothing don't they understand?
I'm sorry about your sister's health and the burden it has placed on both of you. I pray that her cancer goes into remission and hope she can finally experience an improvement with her health.
Have you tried contacting your state senator or assembyperson regarding your complaints about the country's healthcare system and harassment from collection agencies? I live in ny too and I know to locate a senator go to www.senate.state.ny.us.
If your sister wants relief from the chemo & maybe get help with the arthritis you may want to look into acupuncture (see the nat'l inst. of hlth site, nih.gov to learn more about alternative options). Most insurances pick up the cost for acupuncture treatments.
Also, do you have a support system, someone you can talk to or help from other family members?
I'll look into acupuncture for my sister and see if her health insurance will pay for it. It couldn't hurt.
As for a support system, I don't have anyone. I have a 95 year old aunt who lives in California. She calls all the time and wants to help but there isn't anything she can do. She sent us money a couple of times but I asked her not to do that any more. I feel bad taking money from a 95 year old woman. I'm sure she needs it herself. She said that she wouldn't send money if she couldn't spare it but I'd rather she didn't. It was very kind of her nonetheless.
I have an uncle who lives here in NY but he has his own problems. One of his daughters, my cousin, died of breast cancer in December of 2005. She was 54 years old; six days younger than me.
Two weeks ago another one of his daughters, another cousin, died from breast cancer. She was 56. He has his own problems and I won't burden him with mine.
There's a woman who was my mother's friend who lives in the building next to mine. I've known her since I was 11 years old. Her daughter and my sister went to school together. She's always telling me to call her if I need to talk to anyone and she's always asking about my sister, but again, I won't burden her with my problems.
There is no support system, just my sister and myself.
Pick up the phone and call 1-800-677-1116 to find your nearest AAA office.
As for the bill collectors, notify them in writing that due to your stressed state and your sister's health they may not contact you any way except by mail. Then file their letters and don't even open them. As the lawyer said, there's nothing they can get.
Check with your local hospital for care givers support groups, some meet by phone. You will not help your sister if you wear yourself into the ground. Take a deep breath and calm down. Practice meditation or even just a quiet time listening to soft music and paying attention to your breathing. Give yourself a rest. Talk to your doctor about some temporary anxiety medication. I take half a tablet of Atavan at night and it gives me a good nights sleep of about 7 hours but I can wake up if I'm needed.
Stress can be handled if you do something every day to de-stress and relax. When you pile on every day on top of the last days, you are sure to crash and you invite all kinds of chronic illnesses for yourself. that will not help your sister.
As for being paid $20,000 a year to care for your sister... dream on. I dare you to find a CNA who is paid anywhere near that through a home health agency. Home health care provider is one of the lowest paying jobs in the US. But I understand that anything would help you. Do check into being certified by a home health agency and employed by them. The worst they can do is tell you no, right?
Best of luck. Having been there with my mother for 9 years with cancer, I am thinking of you.
Hopefully we are reaching a critical mass in regards to socialized medicine. I truly hope that in the next election we choose a leader that has enough courage to tackle this problem.
And I agree with you on the whole issue of family being able to be the health care providers for their own loved ones and receive compensation for this. It seems like another idea that we should be able to see come to fruition in this great country of ours.
Please keep the faith, you have many people sending you positive energy.
If you haven't spoken with a social worker do so as soon as possible. If your sister qualified for a CAPS program you could be paid to be her aid, or they could get someone in to help her for up to 40 hours a week so you could work.
I agree with the others about finding a caregiver support group and trying to take care of yourself.
I could fill pages with my rants about health care and insurance companies, but I won't subject anyone to that. I will just wish you the best and offer to be of any help I can.
Peace
Also, please do not feel that you are a burden to those who want to help. It is a blessing to have the opportunity to help others. I have a friend who tells me whenever I try to refuse her help that I am depriving her of her blessing.
I'm glad that Gather is providing you with an opportunity to vent your frustration. I will be thinking of you and hope that you keep us all updated on your situation.
Teresa - the oncology nurses where my sister gets her treatments are the best. There are only four of them there and they run around all day helping the patients. They are kind and thoughtful women and I love them all. They might be busy but they are never too busy to help if there is a problem, if you feel sick, if you need some juice, or to just talk when you find yourself crying. I don't know how they do it, I don't know how you do it. It must be awful to see a patient for months or years while they get their chemo and suddenly they die. How do you go through that pain all the time? I know the nurses get to know their patients and it must be sad for them when a pietient loses their fight.
Jennifer - I hope your friend continues her fight and wins. My thoughts will be with her.
I know you don't want to burden anyone but I hope you will consider a support group. It helps to talk when you're under stress. And it could help your sister also, there are many cancer support groups in ny. I'm sorry I cannot recommend one but hospitals and medical centers always have postings.
I was put on SSD and then told no insurance for a year.Mean while my lungs went into a advanced diease that is not cureable now. But they knew it was there before
Dancing With My Dream"
Dena, your cancer is gone and you stay well. Something has to be done to help us and this is just my way of telling others what I'm going through. Maybe together we can figure something out.
Sakinah, thank you again for another post. Many people plus cancer care and other organizations tell me that I should find a support group. Even my medical doctor tells me that I have to talk these feeling out with others. But, I don't know if I want to. Sometimes I like the anger I feel. Sometimes I like to just yell at the collectors when they call the house. Maybe it eases the tension. But I know I should do something to ease the pain I'm feeling.
Your story made me rethink my blessings. Always healthy until cancer, during chemotherapy my oncology bill ran about $30,000 a month. Just one injection was $5,000. I feel your pain. Praise God, we had excellent insurance. But even with good insurance the balances are hard to pay.
I'm not experienced with insurance com[anies other than our own, but ours has a (calendar year) "Maximum Out Of Pocket" ceiling. I thought most of them did? That does drastically limit the 20% for a given calendar year. Have you asked about that? I've also learned there is an array of options insurance companies don't offer to tell you about unless you ask, those reducing "Out Of Network" billed balances among other things. Insurance companies refer to it as "discounting." They have potential to tap various coverage resources that we've never heard of, if the situation merits it. But you have to keep asking and that requires determination and going beyond the first person who answers the phone.
Thank God we came across a good insurance rep who's saved thousands of dollars by responding to our questions right away ... if I could ask the "right" question. Just having the same rep to go through every time I have a question is a blessing in and off itself. I happened across this years ago, becoming SO aggravated with "first line of defense" run-arounds that I wrote several executivies in our insurance company. Apparently one of them had a heart. Sometimes executives don't even know what's going on at the bottom rung.
Once I can ask the right question, it usually results in "waiving" this or that "Patient Liability." I've rarely made a call of this nature without it being effective. There's not a time when I haven't saved by calling and persisiting until I could speak with a 'higher up.' This started with me wanting to understand how to avoid higher costs by "doing the right thing" under our policy; and it ended with understanding there's just a lot of coverage options out there that they don't tell us about unless we ask.
My experience has been and I've heard from other reliable sources that insurance companies calculate the savings of "denied claims" into their bottom lines. That is their first prerequisite in handling any claim, regardless of its merits. That is how they train their (what I refer to as) "first line of defense" reps to think and to react.
There are thousands to be saved if you go higher than the first rep who answers your call. Telephone reps are trained to deny/argue against eveything. When you ask for a supervisor they will tell you the supervisor is going to give you the same denial (which often is NOT the case). Once you get to a higher-up, you'll usually find there IS an economical answer in your favor. I suspect that's because higher echelons are held to higher legal standards.
I thought there was a relatively new (federal) law that prohibited medical debt collectors from harassing patients? I think it's covered under The Patients Bill Of Rights, if not others? When forced to sign doctors' intake documents, I add a tag line at the end of their financial section to the effect, "I understand you are an In Network provider. I will not be responsible for costs that exceed In Network coverages unless they are disclosed to me in advance." Then I add "see disclosure" under my every signature. I believe The Patients Bill of Rights provides for this advance cost disclosure as well?
There' was only one occasion (using that tag lilne) when I was escorted to the financial office and I was grateful for the discussion. That situation involved my expensive chemotherapy (i.e., representing substantial income). It resulted in the doctor working with my insurance company. He ultimately accepted their "maximum benefit" as payment in full (setting aside typical copays and coinsurance, of course.) This written disclosure also gave me grounds, on many occasions, to refuse payment of "billled balances," because their overages were not disclosed to me.
I wish I had recommendation for bettering your social services. Our state is very good with that assistance but I suppose it varies by state? And I understand, too, that demands a persistence to get through to the right agency or person who can and will be helpful. I think the earlier recommendation about You becoming certified was an excellent one!
God bless ~ you are in my heart and on my mind. My love to your sister. I wish you both strength of heart, hope, health, and personal constitution. I hope everyone reading your article will take a moment of prayer on your behalves.