In 1989, hepatitis C was finally discovered. But, it wouldn’t be until 1992 before donated blood would even begin to be screened for this disease. For many Americans like Felix Garcia, it was a diagnosis in waiting.
In our most recent article, “What These 4 Recent News Headlines Can Teach Us About Hepatitis C we at PSI touched briefly on Felix and his story.
Born with Hemophilia and then given tainted blood in the 1980’s, Felix now also has Hepatitis C and HIV. For Felix and countless others who contracted the disease well before it’s discovery, it has been a long journey.
We recently reached out to Felix and asked him to share his story with us. In his own words, here is his story.
My name is Felix Garcia. I live in outside Albuquerque, New Mexico in Rio Rancho. My wife and I call it our bubble. It’s where we came to make a life together, with 4 children and one beautiful grandson in the mix. Some people would say we have the perfect life. I always laugh at that, since no one would want to trade places with me.
You see, I was born with Hemophilia B, it runs in my family. Back in the 70’s and 80’s when I was just a boy, all our medicine came from donated plasma. And in the 70’s and 80’s the nation’s blood supply got tainted. First Hepatitis C hit the blood supply. Not enough attention was given to it, so thousands of people continued to get infected by it. Then came HIV/AIDS. Thanks to Ryan White and early advocates, finally attention was given on the fact that the blood supply and the medicines made from it were contaminated (tainted).
11 Years Old Both Hepatitis C and HIV Positive
In 1985, shortly after my 11th birthday, my parents received notification that I was both Hepatitis C positive, and HIV positive (at the time that was like a death sentence). After sitting with several doctors, they decided not to even worry about my Hep C. After all HIV disease led to AIDS and AIDS led to death. I would never live long enough to worry about Hepatitis C or my liver, after all Hepatitis C takes years to really do any damage.
Change Your Numbers, Change Your Diagnosis?
I’ll try to speed through a few years. Let’ go to the early 1990’s. I was an adult now (against all expectations), and my hematologist at the time was treating me for me Hemophilia, HIV disease, and following my Hep C. My Hep c still not the focus since “it takes years” blah blah blah. I was even diagnosed with full blown AIDS for a while. I’m not going to get into it too much, but the way my doctor put it was “You had all the symptoms, and your numbers were so low we had to diagnose you with AIDS”. He also gave me the best explanation ever, “They are just numbers, change your numbers, change your diagnosis” So I did. I thought I could concur the world the day the Dr. walked in and said my numbers were not that of a person with AIDS. If you jump ahead to today, my numbers are higher than most regular people walking around, let alone someone with HIV disease.
A Journey Towards Finding the Right Treatments
Since we jumped to today, let’s talk about today. My hemophilia is well controlled with what’s called Prophylaxis treatment. Basically, that means I take my treatment on a schedule rather than waiting for me to bleed internally and then treat to recover while my life is put on hold. So today treatment is a good thing.
As I mentioned my HIV number are great. I once thought about getting off treatment, then I looked at my wife and kids and thought “I would never want to hurt her or leave them”. So, I’m still on treatment for that. My seizure disorder has been under control for almost 20 years. The only time things got scary is when I tried switching medications.
To be honest I didn’t want to switch but, the new Hepatitis C treatments ALL, yes all, have contradictions with my seizure meds.
Can you believe that! Of all the things to stand in my way. I tried a previous treatment, I took what I called the Pegasus ride, with Ribavirin back in the early 2000’s. As a matter of fact, that’s when my HIV viral load started sky rocketing and my T=cells started dropping, so I got on HIV meds. I had gone almost 20yrs without using pharmaceutical medications for HIV. But Pegasus was too much for my body.
It Takes Tears
Where does that leave me today? In fear. The term “It takes tears” has come true. The years have passed, and Hep C is the no longer on the back burner, it’s right up in my face. The number one killer of hemophiliacs is Hepatitis C. I cannot describe the heart break my wife and I felt when my doctor said she considered every treatment and none of them are compatible with my seizure medication. It’s just like the heartbreak I felt when I realized I was having a micro seizure and the new seizure meds where not working.
Finding Hope Amidst Fear
I support PSI today, because they were there for me. We fast forwarded through a lot, including the time I lost my job and couldn’t pay for my insurance. My Hemophilia treatments cost thousands of dollars each. The internal bleeding that would have occurred without treatment, could have tripled the amount I needed and left that bill on the local county hospital. I didn’t want that.
to PSI, I could maintain my coverage through Cobra. That meant my medication was taken at home, I was well enough to look for work to get back on my feet, and I was not a crippled burden to society. PSI gave me a chance to be a productive part of society instead. PSI also shifted my focus. You see, thanks to their help with my premium, I wasn’t dealing with stress bleeds, and spending my days worried about simple daily activities causing internal bleeding. Instead I was focusing on getting back to work and raising a family with limited resources during that time.
Not Forgotten and Helping Others Win
Today, I am doing well. I have a great career, and I have no need for PSI’s help. That does not mean I have forgotten about others who just want to do their part but need some assistance today. I also want to know that if misfortune falls upon us, that my family and I know that just because dad has these chronic illnesses, he won’t stop trying to provide, and there is an organization out there who is willing to help. PSI helped me reach today so I can battle Hepatitis C, and someday win.
PSI Was Founded Upon Its Own Hepatitis C Story
PSI Founder, Dr. Dana Kuhn, personally relates to our patients and their struggles which is why he founded Patient Services Incorporated. He too, was diagnosed with Hepatitis C and tested HIV Positive. Dr. Kuhn shares his story here.
Diagnosed with Hepatitis C. What Now?
If you or someone you know has been diagnosed with hepatitis C, there is hope amidst the fear and the countless tears.
Patient Services, Inc. continues to provide peace of mind to patients living with specific chronic illnesses by providing financial assistance to eligible persons by:
- Subsidizing the cost of health insurance premiums
- Providing pharmacy and treatment copayment assistance
- Assisting with Medicare Part D co-insurance
- Providing travel assistance for transportation reimbursement
To learn more about our types of assistance, click here. You can also learn about the various programs PSI has available based on your type of insurance as well as our supported illnesses by clicking here.
Tell Your Story
Do you have a story that you would like to share or want to find out what you can do to advocate on behalf of the millions of people impacted by rare diseases and chronic illnesses? Learn more here.
Helping Others Someday Win
Felix, thank you for sharing your story with us as well as the work you are doing to help others someday win. Because of you, for many, that someday is TODAY.