The most expensive drugs are the ones not taken
News headlines remain dominated by conversations around drug pricing, from the controversy over Mylan’s EpiPen and Hillary Clinton’s proposed “Consumer Panel” in response, to the inhibiting costs of hepatitis C medications that prevent patients from receiving the care they need.
What hasn’t garnered the same level of attention is the fact that the most expensive medication is the one that the patient doesn’t take. As a cardiothoracic first assistant and as a hepatitis C patient myself, I have a deep, personal and intimate understanding of the challenges associated with getting approval for high-cost but effective drug therapies that can combat such diseases. I also have firsthand experience with the challenges of staying on those therapies day after day, despite the highly toxic side effects that significantly impact quality of life.
I was a surgical technician in the Army during the Vietnam War. Since there was a shortage of surgeons, I was required to assist in highly complex procedures and, after leaving the military, I continued my education and became a cardiothoracic first assistant. In 1986 I was called in for an emergency procedure and was inadvertently splashed in the eye by the blood of a patient who was later confirmed to have hepatitis C. I was diagnosed with the disease a short time later.
With chronic diseases, you’re always concerned about how long you’ll live; what physical discomfort and pain you’ll experience; and how much emotional distress you’ll cause your family. I had a close friend who died suddenly from liver complications, which compounded my fear that I could die at any moment. For 20 years, I lived in fear of just how long I would live.
Finally, a treatment became available: three different drugs, all with severe side effects. During this regimen I had to take a total of 12 pills daily and an injection once a week. I had to adhere to a strict time regimen for those medications, causing sleep deprivation and impeding my life. Most days, I didn’t want to get out of bed. But because I am an intricate part of the patient’s cardiac surgery I could not take any days off to recover. If I was not available, we would have to cancel a life-saving procedure.
Nonetheless, I persevered in extreme discomfort for six months. During this time, a friend began the same treatment for hepatitis C, but the side effects were so toxic that he nearly died, having to undergo a liver transplant.
So you can imagine my incredible disappointment in learning that the therapy had not been effective.
A year after my treatment, I heard about a new drug, Harvoni, which could be taken once a day with very few side effects. Hope for a cure returned, until my physician’s office went radio silent. I had to be my own advocate for my treatment. When they finally prescribed the therapy, my insurance company refused to pay for it.
That’s when Avella Specialty Pharmacy stepped in. Suddenly, within 24 hours, I was approved. By coordinating between physician and patient, and overseeing the administering of any treatment prescribed, my specialty pharmacists stuck by my side throughout my treatment. They helped mitigate my side effects and minimized the out-of-pocket cost of the medication for me.
By ensuring patients are on the proper medication, specialty pharmacists help keep patients out of hospitals, thereby lowering overall health care costs.
While I won’t know until November if this new drug was effective, I might still be waiting for access to therapy if it weren’t for specialty pharmacy, which worked to ensure I received the medications I need.