Gayle H.’s Story
Searching for Affordable End-of-Life Care
My sister is currently dying of breast cancer that has spread throughout her body and brain. She is a US veteran. She is in University Hospital, Cleveland. Johnnie H., 50 years old. I am having a hard time getting hospice for her; there are a lot of things they are requiring her to pay and they are taking it from her check and this has upset her so much that it was hard to talk to her. I am leaving to go up. They even charged her for the adjustable hospital bed that would make her able to be more mobile in the bed. I personally thought they treated terminally ill patients with more care and respect – somehow I feel that this lacks in our current hospital environment and it should not.
Is there a group that deals with this aspect so the patient can deal with the sickness and emotions of dying rather than how people are screwing them over? Since she is a vet she should not be worrying over this aspect of her treatment – or am I under a misconception and need to get more people involved? Does the squeaky wheel get the grease? Please help with any information you can provide, thanks. I have made this short but a lot has been going on.
Peggy A.’s Story
Fighting for Quality Care
My story is that I was diagnosed with breast cancer in 2004. I went to my doctor because I felt a lump. She felt it was well and sent me for an ultrasound. I was sent to have an ultrasound and was given a half of an ultrasound. I went home, stewed over the fact that I was told by one of the nurses, “Go home and put tape on it and see if it grows.” My doctor got the report, read it, and called me up. She sent me back for a full ultrasound. I had a biopsy right after that. I had stage two breast cancer.
Having the right detection tools, early diagnosis, and a caring doctor made a difference in my life. You also have to be your own best advocate. Education is very important. It's important to use your intuition, not give up.
This summer I went to the Mayo Clinic and got more answers to my breast and lymph cancers. I received a detailed report that is worth the close to $3,000. I found out that I can possibly be in a clinical trial next year due to my health history that measures tests and their effectiveness.
I come in contact with women throughout the city where I live, as well as outlying areas. I use to work at the infusion center as a volunteer. I have met women who have lost everything, their house, their husbands, their spirits due to financial issues related to cancer. Cancer should not be about losing everything. It should be about a positive spirit and a will to live.
Deborah B.’s Story
Mindful of the Importance of Quality Insurance
I was diagnosed with triple negative breast cancer on January 1, 2006, underwent 4 doses of dense chemo treatments and 34 rads. I was so fortunate to have great insurance; I had little out of pocket expense other than travel.
But the kicker is the Neulasta shot I received after each treatment. The hospital billed my insurance over $13,000.00 for this shot and they paid over $7,000.00 for it. I received four of them. Had I been uninsured or underinsured I am sure that I would not have received those shots unless I ended up in the hospital with low blood counts or a raging infection.
As I understand, getting chemo treatments on time is crucial to the cure of cancer and these shots may have played an important role in my cure of this deadly disease. I never received a shot that I did not think about other women battling this disease who may not have received this shot after each treatment but instead had to wait and see if the shot was necessary; therefore, potentially compromising their treatment plan.
Further, my cancer was caught at an early stage because my insurance never quipped about yearly mammograms. My insurance company played a big part in saving my life. Can't say the same for my husband's insurance who balks at every little thing. Bottom line, every man, woman, and child should receive the same treatment I was so blessed to receive.
Judi C.’s Story
Battling Insurance Companies for a Second Opinion
I was diagnosed with breast cancer by receiving a letter in the mail from my physician. Following a biopsy, the surgeon told me that even though there was only cancer in the left breast, I should have both breasts removed. She said that there was a 50 percent chance of the right breast becoming involved in the future. I said that I wanted a second opinion and I was told that I could see any other doctor in the system. I refused. I could not see a colleague going against each other.
My insurance company would not allow another opinion, so I took it upon myself to make an appointment with the UCLA Cancer Center. After viewing the biopsy results and examining me, they told me that the opinion expressed by the surgeon was archaic and all I needed was a lumpectomy.
I then went back to the insurance company and requested a third opinion. It was denied. After writing a letter to the insurance commissioner in California, the insurance company “changed their mind” and I received the third opinion, which concurred with UCLA. After much yelling and complaining, the insurance company allowed me to have the surgery at the third facility. That was 12 years ago and I do not have cancer in the right breast. (If I get it, it will not be from the original cancer.)
Women must learn to advocate for themselves. The insurance company, and the physician were willing to have allow me to go through unnecessary surgery without truly looking into the diagnosis. I was fortunate in that I could afford to pay for my second opinion. (Even after the surgery the insurance company still refused to pay for the second opinion.) Many women do not question their physician's advice. It is important that they do. I did, and I know that my quality of life is better because of it.
Maggie N.’s Story
Failing Health Care System Forces Uninsured Survivor to Consider Moving Abroad
I am 52—not a young cancer patient, not old either. I am 3 years out from having stage three breast cancer. It has been a long road, no different than so many others. The US health care system has made me so stressed, all boiled down, if I lost my job which enables me to have medical insurance, I am put in a tough situation, no coverage. That is like having a gun cocked to the side of your head.
For many years I have worried myself sick, and just a month ago I lost my job. In five more months if I do not find work, I will be without medical insurance. I worked 20 hours a week, which is about what I could handle due to neuroprathy of the feet and arms and lyphodema. My body is not what is was before all this happened, I feel compromised as I tire very easily.
My husband is self employed, benefits for me are impossible to get or to afford now I have this pre-existing history—so what are my choices? I can’t get help from the government until I am 65. What about this gap from 52 to 65? I am from New Zealand but have been a good California resident for 30 years, and rasied two children here. This has been my home.
I will not have the luxury of seeing my children have families because I do not want to become a burden on my family should cancer return. We will lose all we have worked so hard for in medical costs. I feel I have to leave my children and return to New Zealand where they have socialized medicine. For many years I had thoughts of becoming a citizen of this country but avoided it, just as well. I would have trouble now returning to my own country to receive free health care should I have switched.
I am in a position like thousands, running the risk of not having health insurance. I know a woman who has stage four breast cancer, she had to move away to another state, a cheaper cost of housing state, to have money left over from house profit/savings to enable her to pay/receive treatment when she needs it. Familes are being so affected by the cost of insurance it is shameful. In a nation the world considered so affluent, we cannot take care of our own people. Fantastic health care if you pay for it however if you are unable to afford it, you are lost in the crowd.
We have worked hard all our lives, been productive in society and not wanted/expected anything for free. I am only glad that I have an option to go somewhere else. I am dragging my feet, but for those who do not, forget my family being torn apart, what are others supposed to do?
Being blunt, if cancer doesn’t take you when it’s all said and done, having no insurance will. We need to get serious, look hard at what we can do. Everyone will be affected in some way throughout our lives, either know someone or be that someone where this is their truth.
Angela C.’s Story
From Fully Insured to Medicare—A Young Survivor’s Story
I was diagnosed in June 2001 and at the time had great insurance with the company I worked for because they had cancer coverage. Then 2 months into my chemo treatment, they changed insurances and it didn't cover some of my chemo treatments. I had a great doctor though and he didn't charge me for what the insurance company didn't pay. But when I relapsed in October 2002 I couldn't work and the insurance my husband had wasn't that great. Every time I had an infection or was running a fever, I was admitted into the hospital and was charged a copay of $300.
I had a stem cell transplant in April 2003 and when I was released from the hospital I was unemployed and the hospital demanded to be paid with 60 days and I was eventually sent to collections. I'm now on Medicare and every 6 months when I do my PET/CT scan I'm charged $350 or more. This adds up. I had to have my immunization shots again because of the transplant and none of it was covered. I now owe my doctors office over $700.
I believe the insurance companies are trying to be the doctors. They are wanting to make the decision on what they want to pay or not pay. If a doctor orders something, I believe it should be covered and the insurance company shouldn't fight it. I had problems with medication, because the insurance wouldn't pay for a certain medicine and also one of my medicines, they only allowed a 90 day supply within a year. I didn't have to appeal that though and now every month I have to call so they can approve for me to refill my medication.
It would be very difficult for me to get insurance now. I can't even get life insurance. Because of my transplant, I'm now in menopause and have osteopenia. I'm 28 years old now and I'm going through my life as if I'm in my 50s.
Laura T.’s Story
Single Mom Loses Her Home While Fighting for Son’s Survival
In March of 2003, my son Christopher, 11 years of age, was diagnosed with stage IV of Burkitts Lymphoma. Christopher also had it all throughout his nervous system. Because his cancer was so rare, my insurances would not cover most of the treatments. I had to fight for coverage. But, the insurances would cover experimental drugs but not any of the drugs proven to work.
Finally, after months of fighting with the insurances—and I had double insurance—I was finally able to get a little help. But during that time, I lost my home, sacrificed bills to pay for medicines, which in turn, ruined my credit extremely bad. I also have to pay a weekly payment of $120 a week just to have medical coverage through my company.
I am a single mom of three children, and boy it sure does throw a person into a loop. Maybe I should have quit my job and went on welfare just so that I wouldn't be in this financial situation that I am in. My son would have been covered better by the state then by my company. And I probably would still have my home. The only good thing that came out of this is that my son is still alive and going on three years in remission.
Robin S.’s Story
A Family Dissolves Under Weight of Financial Burden of Son’s Cancer
My son was 16 when he was diagnosed with a rare form of liver cancer (undifferentiated sarcoma of the liver). I was married. My husband and I were both working and we had health insurance through my husband's employer. I had recently lost my job as a professor at a business college and was trying to start up my law practice from my home office. When Taylor got sick we were barely making ends meet.
The doctors had told us Taylor didn't have cancer but they weren't sure what the mass in his liver was. When they opened him up, they knew it was cancer but it took them five days to determine the exact type of cancer. They had to close Taylor up without removing the tumor because it was so intertwined with his major blood system. They would have killed him if they tried to remove it.
As I sat next to Taylor's bed at about three in the morning, we both were awake because we couldn't sleep. My husband and I had words. We were so stressed over the uncertainty of our future. We were facing the possibility of losing our son to cancer and we couldn't even pay our bills, let alone pay for the medical bills we were already facing from the surgery and hospital stay. Then to have to pay for the cost of cancer treatment was overwhelming.
Apparently Taylor had heard parts of our conversation. He lay on the bed, barely able to get up to go to the bathroom, facing an uncertain future. He said, “Mom, I'm so sorry about the money.” I can't begin to explain how inadequate I felt. I couldn't take care of my own son. He should be focusing on recovering from this major surgery and on gathering his strength to fight the biggest battle of his life. Instead he was worrying about how we were going to pay for all of this.
We had insurance but we had a large deductible and co-pay. The cost of his treatments over the next year was a quarter of a million dollars. Even thought we only had to pay a percentage, 20 percent of an astronomical figure is astronomical. Our phone rang constantly with creditors and collection agents wanting to know when we were going to pay our bills. I was unable to work much because Taylor's treatments and the everyday issues of cancer were as much as I could handle. So in addition to extra bills, we had a fraction of our previous income.
After Taylor's first surgery and chemo treatment, we were preparing to leave the hospital. We were told we would have to administer a shot to Taylor every day to try to keep his blood counts high enough to continue his cancer treatment. It was stressful to consider giving your son a shot every day. That doesn't compare to the moment the first 14 shots were delivered to our hospital room along with a statement for $6,122! My heart sank to my stomach. I ask the delivery person if I had to pay them right then. He said they would bill us. Thank God. I can only imagine having to decide whether we would pay our mortgage payment and electricity or give our son a shot that might save his life.
We eventually got to the point we couldn't pay our mortgage. Our electricity was turned off many times. Each time, I had to pay the amount past due and an extra $100 cut-off fee. If I couldn't afford the original bill, how would I afford an additional $100? Friends and family raised money to help us. It didn't even begin to touch the amounts we owed. And as he turned the corner toward survival, everyone believed the crisis was passed and stopped helping us.
We are so blessed because our son has survived cancer. It is truly a miracle. But our family didn't survive. After 23 years, my marriage dissolved. The financial pressures were more than the marriage could stand. I still have all of the medical debts and other debts on top of that. I try to just get through each day. I know that I am one of the lucky ones. Although I didn't survive cancer, my son did. I know many families who lost their child and they are also financially devastated. Probably even more so than I because they had years of medical treatments that failed to save their child.
We tried to keep our insurance coverage. But we had to go on Cobra coverage, which was over $1,000 per month in addition to the medical bills. So both Taylor and I (and Taylor's father) have no insurance. After treatment, Taylor went in for a check up every three months. Each check up costs $6,000. We are now on six month check ups and hope to go to one year next year.
However, all of the other medical issues will just have to be placed on hold. Because I don't have health insurance, I don't take care of medical issues I used to address as they arose. Last summer I fell. I may have broken my wrist or at least tore ligaments. I didn't go to the doctor but just let it heal on its own. My wrist will always be a problem because it didn't heal right. Taylor's beautiful teeth that we worked so hard to straighten with braces will just have to be dealt with later. I just pray Taylor or I don't have a major medical problem. I live in fear for both of us because I know what treatment can cost.
What I learned through our ordeal is that the individual is expected to pay an inflated “retail” price for health care but the insurance companies, the ones who have the financial ability to pay, have made deals with the providers to pay a fraction of the “retail” price. As an “insured,” we received an explanation of benefits showing that the insurance company was given a “discount” and they usually only paid one-third of the amount paid by an individual with no insurance. That is so wrong. That means that the individual is paying the price for the insurance companies’ “discounts.”
This insanity must stop. We need to tell our story. The insurance companies and providers are making money on the backs of individuals already in crisis, facing life threatening illness and financial struggles because their income is reduced. I know that survival is related to attitude. I assure you we are losing lives because it is hard to have a positive attitude through financial crisis on top of medical crisis. I want to help tell the story.
Faith B.’s Story
A College Student Struggles with Cancer-Related Debt
As a young college student I was diagnosed with Hodgkins disease. I was lucky on many accounts, as I was told I had a “curable” form of cancer and I knew I was young enough to continue with my life. I was lucky because I had a great support system in my school and my family that respectively allowed me to continue my studies at my pace and tackled the ever looming medical bills and insurance claims due to my illness. My life was slightly disrupted whereby I could not be active in my social and athletic commitments and was I minimally active in my studies.
But I did recover and began to piece my life back together with the same support system that helped me through my illness. My school was patient and nurturing as I completed classes. I became active in school activities and my mother ensured that months after I was deemed in remission she closed out all claims with the insurance company.
But once I was out of college, I didn't have my parent's health insurance and I was still required to take the necessary tests to monitor my remission. At that time a CAT scan cost over $2000, I knew that because between aging out of my parent’s health insurance and getting a job I had to find a way to pay that bill. It left me with a huge burden and unlike my mother, who dedicated one full day per week to speak with the insurance company, I was inexperienced and didn't have the time or wherewithal to handle the medical bills and the bill collectors that came afterwards.
The transition out of college is a big one, it should be exciting and adventurous as you have a new degree and new ideals. But it was tarnished because having to deal with medical bills and facing the probability of a lower credit score because of an earlier illness is an obstacle that no one should have to face.
Eleven years later I am still in remission and my career has taken off. I consult and I purchased my own health insurance, yet as I applied for it I was deeply concerned I would be rejected or it wouldn't be comprehensive enough. I feared I would be limited in what I could do with my career because I would have to take a job whose insurance could cover my pre-exisiting condition.
I have finally recovered from the financial burden of repaying the cost of the CAT scan but I am always leery of any new fees and bills and am always pleased when my doctor tells me I continue to be in remission. Because although I have more experience to deal with the insurance companies I fear being unable to cover myself if I become ill or becoming a burden to my family.
Jo-Ellen D.’s Story
A Colon Cancer Survivor Who Advocates for Access to Screenings
I am a colorectal cancer survivor. Lack of information and the thought of people in my town dying needlessly due to this nearly preventable cancer because they were “just too busy” or “didn't have any symptoms” turned this homemaker into an activist. I find a deeper level of meaning for the words “too busy”: lack of access, especially to colonoscopy. This is unacceptable in the year 2007, since by the time symptoms become unbearable for the “too busy” or for the un- and underinsured, a trip to the ER is where that colonoscopy appointment is made and kept.
The earlier the diagnosis, the better the survival potential—and the lower the health costs. This undue burden of late stage cancer diagnosis in the ER is shared by all of us. Don't talk about it . . . Please! . . . Just get checked! If you don't have insurance coverage let your state officials—and even presidential candidates—know this is a very expensive way to save money! I have lost many friends who were “too busy.” I still ask everyone to see your doctor and just get checked! You can help by placing a colon screening on your to-do list. If you can't afford a doctor, call a community health care clinic, your nearby cancer center, or your American Cancer Society hotline (1-800-ACS-2345) for help.