One in five American adults will struggle to pay medical bills this year. A sudden accident or frightening diagnosis can touch virtually anyone, unleashing mountains of bills even on the insured. In fact, medical bills are the leading cause of personal bankruptcy, a last resort after millions of families have drained their savings, maxed their credit cards and even refinanced their homes. - Christina LaMontagne. 2014Someone recently told me that "Cancer can financially suck the life out of you." I never thought that would be us, but I'm finding it to be true. If you are like us, we are not used to being on the asking or the receiving end of the situation. Seeking assistance can have an unfortunate stigma attached to it, but that is why there are programs, organizations, and people who are able to help in a time of crisis.
Loss of Income
First, you have to deal with lack of income. When Todd began out-patient chemotherapy every 21 days back in April 23, 2014, he left work and went on disability. This disability was a private insurance policy that he had paid for years while employed. At first his private disability insurer deemed this as temporary, short-term disability, with a monthly payment at a minimal rate. During this time, we had the assurances from his employer that we could maintain our family health insurance policy at his normal employee rate. After 12 weeks, Todd's private insurance policy moved him to a long-term disability status, which meant his disability payment went up by about $500 per month. I worked as a substitute teacher until almost the end of the school year, the third week of May, 2014. Of course, there was no work for me during the summer since school was out. I haven't been able to work during this school year yet because I left to go to Cleveland with Todd on September 7 and I'll be here through the 100+ days his transplant requires. We have had to rely on the private disability payments and savings to get us through.
Social Security Disability
I have to admit, I was pretty ignorant about applying for social security disability. Todd paid the maximum amount into Social Security for years while he worked, but the first time he applied for benefits, he was denied. We appealed the decision and the request was finally approved, but not retroactive to the original filing date (April 2014), but as of the date he entered the hospital for the transplant (September 2014). The private disability insurance company was insistent that if the Social Security Disability was approved retroactively, we would have to pay back every penny of benefits he received from them, because there is a rule about not receiving both at the same time. (We didn't have to do this after all since Social Security did not make it retroactive). Regardless of when you get approved, you have to wait a mandatory five months before you can get your first monthly payment. So, that means we will have to wait until March 2015 before we can receive any help. As frustrating and embarrassing as this may seem, if you have paid into the system and are qualified for benefits, it is a benefit you cannot do without. Just be prepared for the five month waiting period with no payments!
Medical Expenses and Insurance Premiums
Second, you have to cope with increased medical expenses. Although we had the assurance of his employer that our health insurance premium would stay the same, things changed unknowingly. Without any notice, we were "accidentally" cancelled from all of our health insurance on July 31, 2014, unbeknownst to us. Todd went in for a daily chemotherapy treatment and was turned away because of no insurance. (See blog post http://toddsmds.blogspot.com/2014/08/treatment-halted-due-to-insurance.html) He did not get to finish that 7-day round of chemotherapy at all.
After sorting it out with his employer, we had to sign a Right to Elect COBRA Continuation Coverage Form asking us to say that Todd had voluntarily terminated his employment and that he now had to go on a COBRA policy (Note: He did sign it, but he wrote that he left due to going onto disability). Apparently, his employer justified this action saying that Todd was taking leave under the The Family Medical Care Act and not because he was disabled, which doesn't make any sense because No Family Medical Leave was requested by Todd, nor did any of the appropriate paperwork get filed). See: https://www.tasconline.com/biz-resource-center/plans/family-medical-leave-act/
We signed and agreed that our insurance premium would only go up from $585.86 to $597.82 which equates his normal employee rate plus a 2% processing fee. We were surprised by this amount, and asked his employer to verify this, because we were under the impression that COBRA payments should be higher. But they confirmed it.
After making two months of payments at this rate, we noticed that our third monthly payment did not cover the new balance of $1,195.64 per month Once again, we were not told or notified by his employer that our rate had doubled because we were supposed to pay both the employee premium and the employer's share. When making inquiries, we learned that his employer had a made a mistake and didn't charge us enough those two months. Instead, they had to "eat" those two months of their half, because they incorrectly charged us. By law, apparently, they are not allowed to over-bill us to recoup their payments. At this point, we had no choice to continue our health insurance policy. Todd was post-transplant and still needed to be in the hospital for several more weeks needing the post-care treatment. Our children still needed coverage back at home.
After discussing financial issues with other transplant patients in the hospital, we learned of some grants and programs that may be available to us by several leukemia and cancer organizations. So, we contacted our social worker at the Cleveland Clinic to start the paperwork. I'll share these organizations later in the blog, but back to the insurance premium story for now. By October, 2014, while Todd was still in the hospital, we had learned through the another source that our premiums had now been raised to $1,480.66! We later received a letter from my husband's employer stating that due to the open enrollment period premiums had been raised for the upcoming year to $656.43 per month per employee, and since we were on COBRA, we would have to pay both the employee and employer portion which made the amount $1,312.86 effective November 1, 2014. This explained some of the increase, but not the $167.80 difference. After talking to the COBRA administrator, we asked if the employer had raised it to try to re-coup their lost portions from the prior months, and he said they were not allowed to do this, but he would call the employer to confirm the amount. In the meantime, we called the insurance agent for the employer and learned that since his employer's policy offered the Health Savings account option, which allows for out-of-pocket deductible reimbursement, our policy total was now $1,510.27 per month ($1,480.66 plus 2% processing fee). In essence, our health insurance premiums had almost tripled in three months!
So, we experienced the 1-2 punch! First, lack of income, then triple insurance premiums. Thank God that the insurance we had was great insurance. We had already met our deductible by the time the chemotherapy and the transplant procedure began, so we fortunately did not have huge hospital bills like some of the other patients we met. We did have some co-pays on some of the more expensive drugs/medications Todd needed post-transplant, but they are manageable since we've met our deductible for the year. Next year, may be a different story. Starting January, our deductible ($6,000 per person/$8,000 per family) will start over and that is on top of the $1,510.27 monthly premiums.
And we are fortunate. Most families end up in bankruptcy with medical bills after such procedures. After talking with some of the other patients we met in the hospital, some received bills of $700,000. just for the transplant day alone! Total bills for the entire procedure were near $1,500,000.00.
Now the good news and agencies that you can check into:
What help is available: Grants, reimbursements, organizations:
"Be The Match" Patient Services offers various grants depending on the patient's specific circumstances: whether the donor is related or unrelated, whether the transplant is autologous or allogeneic, and whether the transplant takes place at an approved transplant center or not. Autologous transplants are not eligible. Unrelated donor transplants are eligible if the donor was found through the National Marrow Donor Program. Related donor transplants are eligible. There is a criteria that has to be met including a statement of income and expenses. We contacted our assigned social worker at the Cleveland Clinic who gave us an application for the Hendrick Marrow Program Grant for transplants using related donors. Contact a social worker at the hospital in which your transplant will take place at for assistance in getting the grant application processed. For more information visit their website: www.bethematch.org/patient. This grant is usually a one-time payment/award.
A second source of assistance is through the Leukemia & Lymphoma Society and their co-pay assistance program. This program can provide assistance to qualified applicants in paying their treatment co-payments, insurance premiums, and medication co-payments. Go online to www.LLS.org/copay or call 1-877-557-2672. I will warn you that most of the application process for this program is online. There will be some verification that will need to be processed, like proof of diagnosis from your doctor, but they handle this directly. You do have to provide a copy of your insurance card, citizenship/residency proof, and proof of income. This nice thing about this program is that the award given is usually available for your co-payment claims for a year from treatment.
Another source, believe it or not is the hospital! First of all, many large hospitals or cancer treatment centers have their own charitable foundations that can assist those in need of financial assistance. Second, these same hospitals may be able to assist you with your insurance premiums during chemotherapy, transplants, and post-transplant treatments because it is beneficial to them for you to maintain your health insurance. They can collect more money from an insurance company for these large ticket item procedures than from a person with no health insurance. And, as a last resort, many people fail to realize that you can negotiate with the billing department of the hospital on final bills. Many times they are willing to settle for an amount they can collect, than for collecting nothing at all. Options include establishing monthly payment plans and/or negotiating a lump-sum settlement amount.
Don't forget to exhaust all available national and local sources. A social worker is your best advocate in this situation. Even the American Cancer Society can be of some help. For example, discounted hotel rooms for caregivers and cancer patients are free for a few days and thereafter rates can be reduced to $12 per day. While I have heard some negative stories about some of the facilities, it may not be the case everywhere. In the Cleveland area, The American Cancer Society has agreements with some of the Extended Stay Hotels with this type of arrangements. The Marriott Towne Suites we are staying in is subsidized with significantly reduced rates and offer extras such as free shuttle service to the hospital and/or free parking passes for the Cleveland Clinic parking garages which can save up to $100 per month.
I have talked about the Hope Lodge in prior posts, and would like to mention it here. It too is an excellent resource for transplant and cancer patients and families going through treatment. The Hope Lodge here in Cleveland provides FREE lodging for the patient and an adult caregiver going through treatment at the Cleveland Clinic. There is often a waiting list, so you need to have your social worker help get you on the list. They provide a private room, freezer and refrigerator space, community space with TVs and computers, and a community kitchen for all the patients and caregivers to use. In addition, various groups (church, fraternities and sororities from Case Western Reserve) come in at least once a week and cook meals for those staying there.
While we were tempted to seek out a second opinion and have the transplant procedure at the Ohio State Center so we could be closer to home, we are glad we stayed with the Cleveland Clinic. Not only for their great doctors, nurses, staff, and awesome social workers, but for their facilities that allow for visitation from friends and family due to the state-of-the art filtration system and because they are an approved transplant center that has the financial ability to help with subsidies.
Local sources include Cancer Support groups, your church family, friends, and neighbors. A fellow transplant patient was fortunate enough to have meals brought in from church families, and their neighborhood even organized a golf scramble with all the proceeds benefiting the family! Don't forget to contact your local chapter of the American Cancer Society or American way to see what help they can provide.
Here in Cleveland they have an organization called Touched by Cancer that provides two locations called The Gathering Place, where cancer patients and families can go for counseling, exercise programs, art classes, nutrition classes, music therapy, meditation and relaxation therapy, and other activities at no cost. http://www.touchedbycancer.org/
I'm sure there are more organizations you can find online or just by making connections with other cancer patients.
"How are we doing now?"
Well, without going into personal details, we are making serious changes. We are cutting our monthly expenses. I am looking for a full-time job with benefits so we can get rid of the high cost insurance we have after Todd's treatment period is over. We are looking into The Affordable Care Act (Obamacare) which is something I never thought we would have to do. Unfortunately, we are finding that the policy we would qualify for or need would still cost us about $1,000. per month! I will go back to substitute teaching until I can find something better. Todd's ability to go back to work at this point is not known. Sometimes it can take up to 18 months for a transplant patients to get their energy level back to normal. Beginning in March 2015, Todd will finally get his first Social Security Disability payment which will be a huge help. We've talked about selling our home and downsizing in the Spring to something smaller or renting a home or apartment in Beavercreek so our youngest daughter can continue to go to school there. Whatever happens, or however discouraging things may seem, we don't want to lose sight of the precious gifts of life and love we are blessed with. We are trusting in our Great God!
References:
LaMontagne, Christina. March 26, 2014. Web. Retrieved from: http://www.nerdwallet.com/blog/health/2014/03/26/medical-bankruptcy/
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