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May 19, 2004 DAY #204


The Costs of Leukemia

There are many costs associated with Leukemia. My hope is that by discussing these costs, and ways to mitigate them, people will be able to deal more effectively with the financial and personal ravages of Leukemia and other serious long term diseases.

The first cost is obviously the cost of treatment. Fortunately, I have a great medical insurance plan that covered virtually 100% of my treatment costs except for prescription drugs that I get from my local pharmacy. Just to give you an idea, I spent about 36 days in the hospital for my induction chemotherapy. I had some complications, which drive the costs up, of course. I don't know the exact amount of the bill for all this, but it was something like $340,000.00. My consolidation chemo was in the neighborhood of $16,000, and I understand that the cost of a Stem Cell Transplant is around $400,000.00. I don't know if that includes the cost of the prescription drugs. I suspect I take around $5000.00 worth of pills every month, although that total is diminishing slowly as I am weaned from the medications. In addition, I have probably had around 30 doctor's appointments since my transplant, each of which cost at least $100.00 plus lab costs. Fortunately, again, my medical plan had relatively low co-pays. Some medical plans have upper limits on what they will pay. Significant complications and extended treatments could easily exhaust those limits. Many plans also have much higher co-pays for procedures, office visits and prescriptions. Without a really good medical plan, you can see that this would rather quickly exhaust the financial resources of most people in America. I have been very pleased with my medical plan. Except for a few little annoyances they have been very proactive, quick, attentive, and very helpful. The transplant coordinator has been a sweetheart. Some day, Menchie and I want to meet her and give her a big hug. We joke about her being our medical mommy.

Unfortunately, medical plans don't take the place of actually earning an income. Another cost of illness is the inability to make a living for an extended period! I have been out of the workplace for 11 months now. I am working part time as my condition permits, but most doctors recommend waiting 1 year after transplants before going back to work! Magazines related to cancer treatments are literally studded with advertisements for people who will help you cash in your life insurance policies, mortgage your houses and sell your assets so that you can continue to pay your regular bills. A few people, like me, have jobs which can be done, at least partially, by phone and computer. Between state disability, working from my hospital bed, and juggling short term disability and vacation time, I was able to keep my financial head above water, but it was pretty rough water at times! For most people, whose jobs are more physical or require constant direct customer contact, their regular income stream simply stops. They become completely dependent on public or private disability insurance. If the patient is the sole breadwinner for a household, the family could instantly and precipitously drop below the poverty level. Here in California we have state disability, which helps a lot. Social Security Disability is available after 6 months. I also had short term disability coverage at work, and long term disability. Unfortunately, long term disability only pays 66% of the regular salary starting at the 6th month, and I only had 80 hours of short term disability since I had just started working at my company 8 months before my diagnosis.

How do you mitigate some of these financial problems? Much of the treatment cost can be mitigated by participating in trials. The patient's doctor and clinical social worker should be able to assist with locating appropriate trials, and many trials are listed on the internet. The Leukemia and Lymphoma Society will give patients up to $500.00 per fiscal year to help pay out of pocket expenses for treatments. They will also assist patients with getting additional grants from the American Cancer Society and other organizations. Anyone diagnosed with a blood cancer should get in touch with the Leukemia and Lymphoma Society immediately, regardless of financial need. I didn't contact them because I didn't need their money for treatment. That was a big mistake on my part. They provide many other services that can make a big difference in a patient's life.

The income problem is more difficult. My company had a special form of disability insurance to form a bridge between the short term and long term disability. When I was hired, I figured I was healthy as an ox and didn't need that. Boy did I regret that decision! If you have the opportunity to make sure you have enough disability coverage, my advice now would be "take it!!!!" I signed up for it at the first opportunity after the fact! Start working on your Social Security Disability as soon as you are diagnosed with a long term illness. They want your life history in triplicate. It is a detailed and arduous application process. They want complete details on employment, marital, and financial history. I didn't do it myself, because I was earning too much to qualify for it anyway. If you can't work, it could be a lifesaver, and your long term disability insurance company will insist that you apply for it. Long term disability is a major hassle to get going. I was assigned a case worker who did the absolute minimum required of her to get me disability. If I had not actively intervened many times, I would not have gotten it at the 6 month point, which would have caused major financial hardship. Patients and caregivers need to be VERY proactive in getting long term disability started. Track the process all along the way, eliminate bottlenecks and keep the process moving when it threatens to stall. Become a major pest to the case worker! Your disability insurance company will use any excuse to avoid paying you! I investigated working with creditors to request "vacations" from making payments. Most were willing to talk, but there were lots of forms to fill out. In the end I was able to make all of my payments, but I would certainly encourage this for anyone who finds themselves in a financial bind. I would prefer to do this over cashing in an insurance policy, for instance. Again, contact the Leukemia and Lymphoma Society. They have hundreds of volunteer/survivors across the country that have been through this, waiting to help people get through this very difficult time. We can help! All you have to do is ask!

Tomorrow, The Human Cost, and What You Can Do. Thanks!


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