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Pat's Place: Creating A Life Plan – Budgeting For Life With Multiple Myeloma

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Published: Jul 8, 2010 1:24 pm

If you are a multiple myeloma patient, you probably understand the costs associated with your cancer. Unlike some people who probably need to trim their budget by bringing a bag lunch to work or skipping their daily latte, that kind of “fiscal responsibility” won't help much with monthly chemotherapy bills totaling as much as $7,000 a month or more!

Financially surviving multiple myeloma takes careful budgeting and planning—no fun when you are already sick and stressed. Here are some tips to help begin or refine your new cancer related budget and financial plan:

Take care of the big stuff first: Review your insurance.

If you or your spouse receives health insurance through an employer, November is a very important month. That is when large employer-sponsored plans like Cigna and Blue Cross/Blue Shield allow you to modify your health insurance coverage.

Some workers gamble with high deductibles. Not you! Since it is more than likely you will exceed your yearly deductible, try to find the option with the lowest deductible or that pays 100 percent after your deductible is reached.

If you are uninsured or are in danger of losing your job and insurance, try and take advantage of the new federally-funded high-risk health insurance pools for people with pre-existing conditions. Many states, like Wisconsin and Massachusetts, are using the money from the federal government to set up their own state-run pools. But residents of other states, like Florida, can get insurance through federal government-run pools.

Since a majority of multiple myeloma patients are over 65, Medicare is another likely option. Please be aware: Velcade (bortezomib) is administered by IV and usually covered under Medicare Part B. Thalidomide (Thalomid) and Revlimid (lenalidomide) are oral chemotherapy medications. They are covered under Medicare Part D, and you will have to pay the entire cost of the drug while you are in the infamous Medicare drug coverage gap, known as the “donut hole.” Then Medicare coverage will cover most of the costs again. That hole will slowly close over the next four or five years. But for now, try to find Medigap insurance, since you are likely to get stuck with thousands of dollars of uncovered drug expenses.

Now on to the budget.

Your budget doesn't need to be complicated. Most accountants use a double entry system of bookkeeping. That isn't necessary. Simply make a list of your monthly expenses (yes, all of them—don't cheat!) in one column and your projected income in another. Income can be wages, a reverse mortgage payment, child support, Social Security, or disability payments—or even selling coins or other unsecured assets in any given month.

As you’re creating your budget and deciding whether you need to make changes to your expenses or income, I’d recommend seeking professional advice. (Please avoid any service you see advertised on TV.)

For instance, check with your city or county. One or both will most likely offer free budget counseling to residents. There are also non-profit groups that can help as well. Additionally, the social worker at your hospital or cancer center may be able to point you in the right direction.

Often, these services are provided at no cost or for an optional donation. If you have to pay a fee up front, run like the wind! But a reasonable, hourly fee could be money very well spent. (Hopefully you can find a service for less than $30 an hour, but this may depend on where you live).

Careful planners may want to see more than one counselor or planner.

It took less than one year after my myeloma diagnosis for my wife, Pattie, and me to estimate that our expenses would continue to exceed our income each and every year in the future.

If you’re in the same situation, what should you do? Again, look at the big things first.

Do you need to downsize to a smaller home? If selling is unlikely, what about a reverse mortgage? Or, like almost one half of all Americans, your home is now worth less than your mortgage, does it make sense for you to plan a strategic default, returning your home to the lender? This might allow you to rent a less expensive home or apartment with less maintenance, insurance, and no property taxes.

What about relocating to another city or state with a lower cost of living? Pattie and I cut our living expenses by almost 50 percent by moving to Florida. The very affordable housing, low heating costs, and much lower property tax really helped.

It can be a slow process, but have you applied for social security disability insurance if you are under age 65 and unable to work? Take great care with your initial application. We have all heard the horror stories associated with truly disabled multiple myeloma patients who are denied social security disability—at least initially.

Myeloma is on the “fast track” list for approval of social security disability, but that doesn't always seem to help. Get the advice of an attorney or social security disability expert before you apply. It is easier to spend some extra time on the initial application than to go back and sue for benefits if your application is denied.

These are big, big issues and changes you may need to make at a time when you may feel most helpless. Just try and remember these problems won't go away on their own. Attack your budget head-on! Embrace the challenge like a large, intricate jigsaw puzzle!

You may feel better soon—and you may not. You may be able to work for many more years—and you may not. You’ve probably heard the saying: “Plan for the worst, but hope for the best.” I can't think of a better slogan for us—except feel good and keep smiling!

Pat

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Photo of Pat Killingsworth, weekly columnist at The Myeloma Beacon.
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4 Comments »

  • Lynda Clark said:

    Just to clarify: You mentioned that social security disability insurance is called SSI. This is a bit misleading. "Regular" social scurity disability insurance, based on a person's previous wages/earnings experience, is NOT SSI. SSI is "Supplemental Security Insurance", which is not based on earnings. It is a needs-based program for the disabled who do not quality for "regular" social security disability, due to a lack of paying social security taxes earlier in life.

    After applying and completing the paperwork, I was quickly deemed eligible for "regular" social security disbility payments after the usual six-month waiting period (six months from the time I was stopped working due to my diagnosis). When I filed, I was in the process of receiving my first stem cell transplant. Previously, during the ealier months of my diagnosis and work stoppage, I was lucky enough to be covered by my employers' long-term disability plan. Once I returned to work after a three-year treatment period, I continued to receive social security disability for six months during what is considered a "trial work period".

    I was fortunate to have worked as a social security claims administrator many years ago, so I was somewhat familiar with what the process was all about. I admit, it is very daunting for those unfamiliar with the process.

  • Pat Killingsworth (author) said:

    Thank you for the insight, Linda! My paperwork all says "SSI." even though I am clearly SSDI. Not sure why. I apologize for the over simplification. Knowing how the system worked clearly helped you gain first application approval. From what I understand, we are among the lucky few who are approved right away. Good luck and thanks again for contributing and reading! Pat

  • Greg Wass said:

    Please let it also be known that if your transplant or clinical trial takes, and you are considered in remmission, your long term insurance company and SSD could be stopped. You would be capible of doing work some where. Long term insurance companies reviews with your doctor every six months looking for this. If you have a complication say in your back or neck, this will exempt you from this. Unlike renal failure which is accepted with no denials, cancer patients walk a fine line even with the prognosis of no cure.

  • Pat Killingsworth (author) said:

    Wow, Greg--good point! I have lots of "holes in my bones" and, coincidentally, lots of damage in the back of my neck. Silver lining? Pat