06/04/2015 03:46 pm ET | Updated Jun 04, 2016

High Costs of Cancer Drugs

Many cancer patients may not even understand why this topic is in the news. Traditionally understood chemotherapy was and is usually done intravenously in clinics at the hospital. However, with the advent of pill form chemotherapy, the costs are treated differently. They do not fall under the hospital portion of insurance; they fall under prescription coverage.

For someone like me, a chronic myelogenous leukemia patient, I never went to the hospital for infusions of chemotherapy. Traditional infusion chemotherapy did not work for my type of cancer. Prior to the advent of TKIs (tyrosine-kinase inhibitors) which directly target problem cells, the life expectancy for someone with my type of cancer was two years. With these new cancer drugs, I have the chance at surviving beyond the two-year mark to possibly a normal life expectancy. There is a catch, however. The current standard of care requires I take a chemotherapy pill every day for the remainder of my life, or until it stops working, when I would require a bone marrow transplant.

This is where the trouble comes in. Not only is this type of treatment looked at differently by insurance companies, it is also looked at differently by those without direct understanding of it.

I never lost my hair, but I live daily with many of the same side effects traditional chemotherapy patients experience: chemo brain, nausea, fatigue, exhaustion, blurred vision, weight gain/weight loss, edema, bone pain, anemia, etc.

Yet, because it is not something the general public is used to seeing for cancer patients, often there is less tolerance and understanding for someone in this position. The idea that a patient is simply taking a pill, overshadows the reality that the pill is a heavy cancer treatment with daily side effects, from which there are no breaks.

"When are you through with chemo?" Is a question I hear frequently. My answer of "never" is the part of the conversation that throws people. These daily cancer drugs are not a cure, they are a holding pattern until a cure can be found, and they are not easy on the body.

They are not easy on the finances either. Since many cancers, are now considered manageable with ongoing treatment, there is no financial break between rounds of chemo, as other cancer patients may experience.

Every month since 2007 with insurance, I have had to find a way to cover what started as $3,000 a month and rose to nearly $9,000 a month for the drug treatment alone. Patients in this position must somehow find maximum out-of-pocket costs for insurance every January in order to even receive their January cancer treatment. This does not include the doctors visits, premiums, co-pays, alternative therapies for side effects, or the costs of traveling to see specialists.

Drug companies do offer assistance programs, but not everyone qualifies. There are non-profits that help with certain costs, but many non-profits cannot handle the mass amount of people needing their assistance. Just recently, The Leukemia and Lymphoma Society ran out of allotted funds to help CML patients. The need is simply too great.

We are in a different time period thanks to scientific discovery. Our health care system and our views of what cancer looks like need to expand to match up with where we are. Thankfully there are these incredible upcoming treatments that work for many people with many cancers, not all, but many. These new technologies are saving lives, they are what we have been working towards, but they are not simple situations.

It is important to note that although cancer drugs are the ones getting the most push back from doctors and consumers as of late, cancer drugs are not the only ones that are unsustainably expensive. We need to look at where the costs of these drugs are going and why the costs are so high for Americans. Are the majority of the costs going to research other drugs? Clinical trials? Marketing?

Whatever the reasons, in America, drug prices are far higher than in other countries, and many lives are suffering because of it.