by Daniel McMullan
In 1984, I was in a serious motorcycle accident that put me in the hospital for more than a year. The many operations and blood transfusions I went through left me with hepatitis C. After everything else I went through, that really didn’t worry me much at the time.
I had never seen anyone sick with the disease before my accident, and for several years afterwards, I still never saw anyone who had come down with the illness.
Then about 10 years ago, the strangest things started to happen. A friend would feel ill, vomit up some blood, go to the hospital — and I would never see them again. It got scary. More and more people I knew were dying.
Does everyone have this disease? It seemed like it was everywhere! In the last three years, I lost a half-dozen friends, many that were very close to me. They were people from all walks of life: doctors, nurses, lawyers, politicians, business owners, truck drivers.
Then my personal care attendant got sick. We are very close. She has taken care of me for more than 15 years. It seems to me that the disease really likes to kick in at middle age when your hormones go through changes.
Most people with hepatitis C experience very few or no symptoms for many years after initially being infected. It often takes decades until liver damage caused by the virus shows up.
So many great people have been lost. Most never even knew they had the disease. Among a group that lived at a commune up north where it was very common to share a razor or even a toothbrush, the disease was spread rapidly. Who knew?
At least now we know that hepatitis C is spread primarily by transfusions, blood-to-blood contact, poorly sterilized medical equipment and IV drug use.
At the time I found out about it, they were just realizing the nation’s blood supply was infecting hundreds of thousands. Public health officials still do not know how many people have hepatitis C because so few are tested.
You can get a routine blood test that covers 100 different things from your physician and still the hepatitis C virus (HCV) is not one of them. But the disease is widespread. An estimated 150-200 million people in the world, and four million Americans are infected with hepatitis C.
At the time when the nurse said the doctor wanted to speak to me about my blood results, the possibility of AIDS was what had my heart beating out of my chest. I was actually relieved when he said it was hepatitis.
But now, 30 years later, it is a different story. This thing was a killer. Now it was coming after the ones closest to me. And with two young sons to raise, I always had it in the back of my mind that it would come for me too, one day soon.
I felt an overwhelming urge to fight back, but where do you begin? I can’t have my usual sleep-out in someone’s bloodstream or picket their liver. I needed to get treatment for my friend and personal care attendant. The thing about hepatitis C is, if you have this disease, and you don’t have any symptoms, it’s the very last thing you ever want to think about.
In my work with homeless people, I have all kinds of flyers that I pick up to amass information. So I dug frantically through what I like to call the “Bob Sparks Memorial Library” — a huge stack of papers in disarray, just like Bob Sparks used to do it — and I found it: Oasis Clinic in Oakland, a clinic that attends to the health care and social needs of people infected with hepatitis C.
Before we went down to check out Oasis, my friend and I had an appointment with Dr. Jacob Lalezari at Quest Clinical Research in San Francisco. Quest is doing trials with the latest therapies for hepatitis C and other blood-borne diseases, and although we just missed getting my friend into a trial, we both put ourselves on their list.
There actually was one opening left for a male, but there was no way I was going to accept it while my best friend is sitting there in tears because she is dying. I could wait. And I did.
So it was at the regular Tuesday support meeting at the Oasis Clinic where we finally got the real story about this medical problem and got my friend into treatment. The treatment included interferon and some other medications that are no picnic. The treatment lasted 28 weeks, but at the end it was entirely successful and her hepatitis C was no more.
The Oasis Clinic is run by Dr. Diana Sylvestre. Oasis is a great program that not only offers treatment, but has the best support group and activists I have ever seen. Their work is all the more impressive since, in my experience, not many general practitioners are aware of the rapid advances in the treatment of this disease.
Then, one week after the Oasis treatment for my friend, I got a call from Dr. Lalezari at Quest in San Francisco. “Would I like to take part in Phase III of the Abbvie study?” This study has a 97 percent cure rate and uses no interferon, so I jumped at the chance.
Within the first two weeks, I was completely clear of the virus. (That’s a 30 million viral load to 0 or undetectable.) After the 12-week treatment, I am still clear of the virus and feel great. Throughout the treatment, I had no major side effects. I couldn’t whine to anyone and even felt bad for all those that were cured by earlier, more difficult treatments.
But it looks like they have this monster on the ropes and there is tremendous reason for celebration.
I went in to talk to my therapist that I have been seeing to work on my memory loss and PTSD from getting hit by a truck while in my wheelchair. I told her about what I had been going through, and after I was done speaking, she stood up and lifted up her pant leg. Right above her ankle were the letters HCV in a red circle and a line through it.
She had contracted the disease as a nurse before she changed jobs and became a therapist! She found out only after being tested for everything else under the sun. Got treated, got cured, and now has the privilege of hearing my troubles once a week! (One of my friends, after hearing the story, said they would rather vomit blood and keel over than have to hear my troubles!)
The thing now is to defeat the stigma attached to this disease, get people tested and get people cured. It’s unacceptable that I, you or anyone else should lose another loved one to this sickness.
We are dedicated to educate and eradicate. So it was with great pleasure that I attended the World Hepatitis Awareness Day Event sponsored by Oasis Clinic and supported by Berkeley Free Clinic and LifeLong Medical at Snow Park (Lake Merritt) in Oakland on July 28, 2013. It was fun for the first time to not only talk about a cure, but to declare, “I just was cured, and so was my friend here.” And him, and her, and those two — pointing out people all over the park.
So get tested! Get treated! Live longer! We need you! Here are some numbers to get you started.
Phone: (510) 834-5442
520 27th St., Oakland, CA 94612
Quest Clinical Research
Phone: (415) 353-0800
2300 Sutter St., Suite 202, San Francisco, CA 94115
Daniel J. McMullan is the director of the Disabled People Outside Project, and a commissioner on Berkeley’s Human Welfare and Community Action Commission.