Cancer can be a burden: financial aspects of cancer

Cancer treatment isn’t cheap. While it’s true that my hospital treatments and chemotherapy medications were covered under OHIP (Ontario’s government-run health plan), there were a lot of expenses that were paid for out of my and my husband’s pockets. The financial burden for some patients undergoing treatment may seem overwhelming but there is help.

I was too ill to work during my treatments and for a lengthy recovery period afterwards, and had to rely on short and long term disability benefits. Some plans are better than others, but my income was reduced to 60% of what I’d been pulling in prior. My husband, being a freelancer/contract person, had substantially reduced income due to the fact that he had to take care of me (I pretty much needed 24×7 care.) If you’re able to continue working during treatments then that’s great, and a big bank-account saver, but if your Doctor says you need the rest, then for heaven’s sake REST. A Social Worker may be able to refer you to income support programs. I have to say that my employer was amazing at resolving any benefits and disability issues that I had, they were very supportive, and I’m very grateful!

My employer offered a benefits plan which helped to cover many of the medications but be aware that not all drugs are covered. As an example, I was prescribed a mouth rinse  that was called “magic mouthwash” or “velvet glove”. It was basically a pain killer — Lidocaine in my case — combined with an anti-fungal to combat potential side effects of the chemo. My benefits plan covered the combined medication 100%, but when I was prescribed just the pain killer rinse it was no longer covered at all. Needless to say I stuck with the combo magic mouthwash.

Be prepared to spend some money on purchases that aren’t covered under most benefits plans. You may need to purchase items that you normally wouldn’t have had to prior to treatment. I needed to purchase special lanolin-free creams to treat my skin affected by radiation, and specialty pillows to prop me up comfortably in bed or on the sofa. I needed a $200 wedge pillow to stop me from drowning in my own congestion when I tried to sleep. Other items not normally purchased might include incontinence supplies (it’s amazing how much pain can affect you in uncontrollable way), over-the-counter medications such as laxatives, bed-side trays or TV trays, services such as dog walking, and the like.

It’s also a given that if you drive your car to treatments, then you’re paying for gas and likely parking. Keep your receipts and a mileage log: in some circumstances you may be able to claim these travel expenses as a medical expense on your income tax form. You can check with Revenue Canada to see if you qualify. Some cancer care centres offer parking packages at discounted rates for patients. Mine did but I had to show them my treatment schedule to get their best parking package that was available only for qualifying patients. There are also volunteer organizations that provide rides to and from cancer treatments for no or low cost. Please check your local cancer care services, church, or social worker to see if this service is available in your area. You can also ask a friend to drop you off.

If your treatment centre is far enough away that you would need to seek overnight accommodations, then in some instances these are also claimable as a travel expense as well as daily meal allowances for you and maybe a companion. Again, check with Revenue Canada to see if you qualify. Also, some cancer centres can refer you to low cost residences while you’re undergoing treatment, or a Social Worker can assist you with finding appropriate temporary housing.

The Trillium Drug Program may offer financial assistance, to those who qualify, to cover drug expenses not covered by benefits. You can find out more information about Trillium here. There are also pharmaceutical compassionate funds as well as other government and community assistance programs, and some cancer centres offer a drug reimbursement specialist to help you find the funds.

I had to use a feeding tube for nourishment since my throat closed up and I was no longer able to swallow. I was instructed to use only the prescribed meal replacement formula in my tube, but that can be expensive. I was prescribed seven bottles of Ensure “Calories Plus” brand or Nestle’s “Compleat” per day, which are roughly $2 per bottle, so I would have spent about $14 per day for feeding formulas. Thankfully one of my sisters, who’s a Pharmacy Technician, told me that these are covered under prescription if I am receiving home health care (I needed in-home nursing care due to the need for in-home post-chemo hydration via IV). I did have to obtain a prescription for it and a nutritional form from the Doctor, and the community home care had to send a drug card to the pharmacy. If you need to use a feeding tube then it’s worthwhile to investigate whether or not you’d qualify for this.

My medications were relatively inexpensive compared to other patients that I know. Some reported having to pay thousands of dollars for their chemo medications because it wasn’t covered under any plan. It’s easy to see why some people get into financial difficulty getting cancer treatment.

If you need help with sorting out or navigating through the financial aspects, your Social Worker is a good resource and a great place to start. They can advocate for you, refer you to assistive or support programs, and can explain your options. I count myself lucky that I had access to the resources and funding that I did. As far as expenses are concerned, Forewarned is forearmed.

—Sandi

Next up: Questions to ask before starting treatments.

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