After you’ve absorbed the shock of your mesothelioma diagnosis, your first question to your doctor will likely have to do with what you will need to do to treat your mesothelioma. While it’s a frightening question, filled with so many uncertainties, it’s a query that must be asked and answered if you intend to fight your disease.
No doubt you’ve heard so many scary things about cancer treatments, including how they can often be worse than the disease itself. But even more frightening can be the potential cost of these treatments, especially if you are not adequately covered by healthcare insurance, which is often the case.
And even if it seems that your insurance might take care of the costs of things like chemotherapy or radiation, there are other costs to consider as well…both financial costs and emotional costs to you, your family, and others.
The “real” financial costs
These days, when healthcare in the U.S. is supposed to be improving, why is it still so expensive to treat cancer? Why is a dose of chemotherapy sky high, for example?
Well, as a recent article in the Huffington Post stated, “the pharmaceutical industry is the most powerful monopoly in the United States.” Indeed, drug prices in the U.S. are so much higher than anywhere else in the world. Generics are often not available because the “patent” period is so long here in the United States.
Additionally, costs are not allowed to be part of drug approval considerations, so drug companies can literally charge as much as the market will bear…and then some.
Furthermore, that same article points out, cancer drugs seem so often ineffective, a sort of slap-in-the-face after you’ve paid so much for treatment. This, the author notes, is because drug companies have the right to test their own products but it isn’t demanded that they open their findings for analysis by someone other than those who have an interest in exaggerating the efficacy of the drug in question.
In other words, neutral parties are not permitted to analyze the data and offer the real story. So, consumers (and doctors) get the rosy picture rather than the honest one, the article explains.
Dr. Vinay Prasad, Assistant Professor of Medicine in the Division of Hematology Oncology at the Knight Cancer Institute, Oregon Health & Science University, recently wrote a book entitled: “Ending Medical Reversal: Improving Outcome and Saving Lives”.
In this book, he shakes his head at the burgeoning costs of treating all kinds of cancers and the fact that, with the exception of a few recently-approved stellar cancer drugs, most are fairly ineffective yet still ridiculously priced. He notes that this problem of inappropriate prices is the norm in cancer treatment, a sad reality for patients.
“Cancer drugs now routinely cost more than 100,000 dollars for one year of treatment,” he states. “One way doctors measure the value of drugs is to ask how much is the total drug cost to get us 1 year of quality life.
Since, most drugs just add a few weeks or months, you have to treat many people to get just one year of extra life. By this measure, most cancer drugs are outrageously expensive. A new breast cancer drug costs ~$700,000 for a quality adjusted life year, and a new colon cancer drug costs $900,000.
And these figures apply only if you give the drug the benefit of the doubt, and assume it works as well in the real world as it does in FDA studies.”
Obviously, these costs are being passed on to the consumer and, at this point, Medicare isn’t even allowed to negotiate drug prices. (Many elderly mesothelioma patients rely on Medicare for their healthcare.)
In addition, the American Cancer Society (ACS) points out that today’s very effective oral cancer drugs (which you take at home) cost even more than standard IV chemotherapy drugs, though they are now often preferred by oncologists AND by patients.
To add insult to injury, they are treated like any other drug by most insurance companies. In other words, you may have to pay a very high co-pay for these drugs – as much as 25 percent upfront, notes the ACS. This can mean thousands of dollars due right there at the pharmacy when you pick up the prescription! (Some pharmaceutical companies have patient assistance plans but often the parameters are very strict and it’s difficult to qualify.)
Add to this the prescription drugs you’ll need to counter the side effects of standard treatments (like antiemetic drugs for nausea) and others necessary for you to deal with your diagnosis (like depression or anxiety drugs), and you’ve added even more to your already horrendous drug bill.
Traveling for Treatment
Of course, because mesothelioma remains a fairly rare form of cancer, there are far fewer specialists available for treatment for this disease than for more common cancers, such as breast cancer.
That means unless you are in or near a major city with a well-known cancer center, you may very well have to travel a distance in order to obtain the best treatment available.
Traveling for treatment can be a major investment and one that may not be covered by your insurance. Consider, for example, that you not only need to cover the costs of plane fare or a long car or train ride, but you must also consider lodging, meals, and potential income loss for whomever is accompanying you to the appointments.
If you’re already in debt before your diagnosis, adding these costs to your obligations could truly devastate you and your family.
As far as flying is concerned, while there is some help available through programs like Angel Flight, it is often difficult to coordinate schedules with them and you wind up using a common carrier, where there are no exceptions made in regards to price, no matter how sick you might be.
You must suddenly become very adept at figuring out how you can lower costs. Frequent flyer programs, hospital-sponsored lodging, hotels that offer cheaper rates to those being treated – these can all help but you or someone close to you will need to do your homework…and do it quickly.
Many cancer patients and their family and friends even become expert fundraisers, hosting events to help raise money for care costs.
Other treatment-related costs
While someone is undergoing cancer treatment, life as it’s known, seemingly stops for the patient and everyone who’s caring for that person.
If you were employed before your diagnosis, chances are that it will be next to impossible to keep your job. For caregivers, working a “regular” job becomes difficult as well, especially if they are appointed as the person who will be traveling with you to appointments, etc., including those appointments that might be far away.
If that person is a spouse, important decisions will need to be made about work – does she/he stay with you and you risk losing homes/cars, etc., or does your spouse go back to work and keep the family income coming in?
Many cancer patients need to make this choice…and it’s often a sad one.
Some mesothelioma patients find that they need to hire professional caregivers, especially when it comes to the point when treatments aren’t working so well. Those costs are sometimes covered by insurance and – at times – are not.
The list goes on.
Mesothelioma cost you can’t measure in dollars
And then there are the other costs…the ones that don’t require you put money out of your pocket. These are the costs that add insult to injury, especially when your disease is one that could have been avoided had you been informed that asbestos exposure could be deadly. These are the costs that affect not just you but your family and friends as well.
These incalculable costs include time lost with your loved ones, particularly little ones (children or grandchildren) who are busy growing while you’re busy trying to get better. They include missed opportunities like weddings and family reunions, graduations and birthday parties.
Mesothelioma takes away time with your spouse and causes you to miss anniversaries, trips, or other special couple’s events.
Of course, stress is a major mesothelioma cost factor. The patient is stressed, undoubtedly, but so is everyone who is close to them. Anxiety and depression set in as well and steal away quality of life for anyone involved with a mesothelioma patient undergoing treatment.
Sometimes therapy by a psychiatrist, psychologist, or counselor is needed – yet another potential financial cost of treating mesothelioma and dealing with its outcome.
Most of all, many mesothelioma patients and their families have lost trust in their fellow man. “Who would allow them to be exposed to toxic chemicals without telling them?” they wonder. “Why would companies keep making asbestos-containing products when they knew they were causing harm?” they might ask.
The answer is usually greed. For these companies, it was all about the bottom line. Lives were traded for a few extra dollars and even today, some 40 years after asbestos use was essentially halted in the U.S., men and women are still dying from asbestos-caused cancer.
That’s a huge price to pay.