December 2, 2019 Blogs

Roadblocks to Treatment

My name is Reva Marvel. I am from a small town in Kentucky, but moved to Cincinnati, Ohio when I was in my late 20s. I am one of many people who was infected with Hepatitis C during the 1980s. I am now 55 and just celebrated the 3rd anniversary of my liver transplant this October. 

Hepatitis C silently ravages the liver. It didn’t take long for me to get extremely fatigued, which meant I could no longer work full time, and I had to go on disability in order to receive medical insurance. 

I decided to join a study where I could receive medication that could possibly cure the hepatitis. It actually worked, but I had no idea how much damage the virus had already done to my liver. I developed cirrhosis, and eventually cancer, even though I had received the curative medicine. I had to take very expensive cancer treatments to keep the tumors small enough for transplant. I was eventually placed on the transplant list, and I received my new liver on Oct. 5, 2016.

About three months after I got home from the hospital I received a call from my surgeon. During some routine post-transplant bloodwork, they found out that my new liver was also infected with hep C. I couldn’t believe it. I had to take the expensive meds again, and the new infection was cured. I was extremely lucky to have been able to receive the proper medications for my new liver. Without those meds, the new liver would have eventually developed cirrhosis and cancer as well. 

At an average cost of $1,000 per pill, and the current treatment time being 12 weeks, the treatment can run upwards of $84,000. Due to the astronomical price, many insurance companies don’t want to pay for one round of treatment, much less the second time. 

According to the CDC, There are nearly 3.5 million people still infected with Hepatitis C in the US. People like me, the Baby Boomer generation, are the highest risk group. Insurance companies want people to jump through hoops in order to receive this life-saving medication because of the expense. If the initial price were lower, there wouldn’t be as many roadblocks to treatment. Meanwhile, the patient’s liver is deteriorating while they wait to be approved for this high-priced drug –– creating more expense for everyone in the long run.

This is why I am advocating for lower drug prices. I was lucky that I was able to receive these meds, but there are so many people who are not as fortunate as myself. Even though I got the meds that I needed, post-transplant life is still incredibly difficult. I exchanged one illness for a few others. I also exchanged one expensive medication for another, as anti-rejection meds are incredibly expensive and missing even one dose can be life threatening. Making sure that I am in a position to be able to get my medication is something I will stress about for the rest of my life.  Everyone deserves a chance to get the best medication that is available at a reasonable cost. 

Thanks for taking the time to read my story.  You can learn more about organ donation at donatelife.net

JOIN US

Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.