I have a condition called Chronic Myeloid Leukemia and there is a miracle pill called Gleevec that controls my cancer but there is no cure. I take the generic version, which you would think costs much less but the reality is that the retail price for the generic of my dose is $10,000+ per month versus $13,500+ per month for the brand name. I think we can agree that even a standard 20% patient cost for Specialty Medications like this one is still a lot of money. While our insurance caps our out of pocket at $500 for my prescription, that is still a lot of money, and I need this medication for the rest of my life. Without it, I will die.
Since the Gleevec patent expiration in 2015, the retail price has only risen on both the brand name and generic versions. Media outlets have written about the anomaly of Gleevec pricing as it doesn’t follow what was once considered the standard which is that the generic was significantly cheaper and just as effective. Big Pharma has no answer when asked why this drug in particular is priced so high, even as a generic.
There is no cure for CML but it is controlled with medication. I have no choice but to either pay, find funding, or stop taking the medication and risk death. I am 45 years old and plan to live at least 20 more years, and with the medication I may well live longer than that. If you do the math, that’s $6000 a year or $120,000 over 20 years assuming the price and my insurance coverage stays the same, both of which are highly unlikely.
My reality is that there is a miracle pill that is saving my life but only if I find funding to cover my out of pocket costs. I have no advocate at my oncologist’s office to fight with Big Pharma on my behalf. While I could go to a big hospital system where they have patient advocates, and I did that last year, I received sub-par care and a huge bill. Not only is there no one helping me at the doctor’s office, I have no one at the health insurance company helping me. In fact when I called the insurance company in tears asking for an oncology patient advocate, I was met with a long pause and the unfortunate news that they don’t have that kind of patient care.
Not only do I have a condition that requires a Specialty Medication, another member of my family does as well so my family’s out of pocket prescription costs are $750 per month. This number does not include copays and the costs of regular testing which are required for our conditions.
Each month I spend a minimum of one hour trying to get my prescription refilled, speaking to at least two or three people because no one understands the medication I am on is needed every day and without it I will die.
There are no skip days or cheat days when you have cancer. You only fight. And fight I will.
I have begged my insurance company for an alternate Specialty Pharmacy and while the prescription is being transferred, it took me upwards of eight hours, countless phone calls, and many customer service agents to get this done. It was all me taking action, no one else.
There is no one advocating for patients like me who require medications for the rest of our lives.
There is no one asking for Big Pharma to be called to the carpet on behalf of cancer patients who are gouged by the system, forced to send bills to collections because there just isn’t enough money to go around, who aren’t sick enough to file for Disability but are too sick to work full-time, who suffer an array of side effects each day, and whose medications cost pennies to manufacture but who are forced to pay thousands of dollars over their lifetime.
I didn’t ask for cancer. No one asks for cancer. No one asks to liquidate their retirement to cover the costs of cancer. No one asks their parents to liquidate their retirement to cover the cost of cancer. Yet here I am in exactly this situation because Big Pharma is getting paid and no one is helping the people who need it most.
My vision for 2019 is to live all 365 days of the year but I can’t do that if the cost of my life-saving medication keeps increasing. I want to tell my story to Congress. I want to facilitate changing the system before I die. And I’d like that death to be far into the future but I just don’t know how that is going to happen.
I beg you to please call and write your local politicians to ask them to look at how Big Pharma is gouging cancer patients, and so many others, who require life-saving medication. I truly believe that our stories and efforts can create change and save lives.