As I sat in a hospital lounge last month, waiting anxiously for my mother's doctor to come out of surgery with good news, the flat-screen television displayed the latest news on the effort (which has since been paused) to "repeal and replace" the Affordable Care Act. It was hard not to relate the political drama to my own life.
While I have had private insurance for thirty-two years, my premium got so high that there was once a time when I had to make a choice between paying rent and holding onto my policy, which allows me to see my HIV specialist and other doctors I have seen for years. Meanwhile, unlike many other patients, my mom is a senior in reasonably good health with no pre-existing conditions, and she needed a pacemaker at 87 years old. It is easy to see how life in and of itself is a pre-existing condition.
Being a long-term HIV survivor, I also have a long-term relationship with my doctor, Judith Currier, M.D. It's not just a visit here and there. You might even say it is an intimate relationship. Like any relationship built over years, I have a shorthand with her -- and a trust that I have the very best in care and information on new treatments. Dr. Currier, the associate director of the University of California Los Angeles Clinical AIDS Research and Education Center, is a leading infectious disease specialist. For me as a positive woman, her focus on women's health and our specific HIV issues is most important.
In 2015, after I'd lived decades with the dual diagnoses of HIV and hepatitis C, Dr. Currier persistently advocated for me to get the new hep C drug Harvoni (ledipasvir/sofosbuvir) after my plan rejected me a couple of times -- even though I qualified for the once-daily pill with a high cure rate and a low rate of side effects. I was finally approved. Twelve weeks later, I was cured of hep C. I believe that partnering with Dr. Currier and being an active participant in my care has played a major part in my success living with two deadly viruses for decades. How did I find her? This is our story.
My Diagnosis, My Fears and My Fiancé
In 1987, I asked for an HIV test from a gynecologist in Concord, Mass. My positive test results were given to me over the telephone. It was the first time this doctor had ever given a positive test result. I dropped to my knees. My fiancé and I agreed to meet the doctor at Cambridge Hospital. He met us inside the hospital's AIDS ward. We walked down the long hallway, past half-open doors with wasting AIDS patients in view. It was a walk down Death Row.
At the end of the hallway, we met the doctor in an empty room. I glanced at the bare mattress, wondering who had just died and when that bed would be mine. I thought to myself, "Will I have dementia? Will I go blind? Or will it be cancer that gets me?"
I asked the doctor, "How long do I have?"
"I don't know," he replied.
"What can I do?" I asked.
"Take good care of your health," he said.
"What does that mean?" I asked.
"Eat well," he said.
Frustrated, frightened and angry, I said, "What does that mean? Steak, potatoes and peas? That's what I grew up on!"
He stood up, shook my hand, wished me good luck, and walked out of the room, leaving my fiancé and me alone and devastated.
I was handed a death sentence. My fiancé went directly downstairs in the hospital to get his HIV test. I wondered: What did I do? Did I infect him? Will his son lose his only parent? We waited three torturous weeks as I watched his teenage son, who had no idea any of this was going on, happily come and go from the house, all the while horrified and sick to my stomach. Thankfully, my fiancé's tests were negative. We got married, and he soldiered on with me to find a doctor and information of any kind, much of which was on holistic and natural remedies.
My Long Road to HIV Treatment
I heard about an internist at Massachusetts General Hospital who cared for AIDS patients. For the first 12 years after my diagnosis, he would see me through my health care despite my refusal to take part in the gauntlet of unsuccessful treatments and clinical trials that so many others put themselves through. I wanted to stay healthy my way. He supported my holistic choices of acupuncture, a macrobiotic diet, supplements and exercise -- a luxury I had since I was in good health.
I went for blood tests every four to six months, and had a CD4 count of 750 for many years. It was at that time that I was diagnosed with hep C, another incurable and deadly virus that would also determine my future treatment choices.
I passed on AZT (Retrovir, zidovudine) and clinical trials available during those years, including an experimental vaccine. I also stood up to a leading researcher who challenged my refusal to participate in his trial by telling me my health was an illusion. Defiantly defending my choice, I replied: "I ran five miles today. That's not an illusion, that's a fact!"
I was fortunate to remain healthy until 1997, when my CD4 count dropped to 225 and I experienced my first symptoms in a decade after my HIV diagnosis. Attending lectures by Anthony Fauci, M.D., inspired hope that some very smart people were working hard to understand HIV as they looked for effective treatments and a vaccine. Following a lead for a vaccine trial, I went to Beth Israel Hospital in Boston. There, I was introduced to a woman standing at the reception desk, a young doctor named Judith Currier who was among the first generation of HIV specialists. She was in residency, and I was a young HIV patient.
We were on a parallel course. Unbeknownst to either of us, the patient-doctor relationship was in motion. Two years later, that introduction would come to fruition when I moved to Los Angeles and Dr. Currier would become my doctor.
In the meantime, protease inhibitors, a new class of antivirals, became my first medications. Ever since I was diagnosed, I had been holistic in my approach to health care, and I felt some sense of control over my health from not having to suffer any of the brutal HIV medication side effects that were common at the time. It was scary to finally go on toxic medications when no one knew exactly what my side effects would be.
It also meant that I would need to go to the doctor more often for blood tests to see how well the treatment was working and how I was tolerating it. A combination of 16 pills a day, three times a day and with food, to prevent the further decline of my health, was a gamble I was willing to take.
Nervously moving into the unknown, I sat in a waiting room in the infectious disease department to see a new doctor who would prescribe this treatment. Surprisingly, a friend from my recovery community who was a nurse there popped out of a door. Her smile sparkled, and her kind, caring words meant everything to me that day. She was the messenger of hope and miracles, since both of us had changed our lives from addiction to recovery.
She comforted me: "You're going to be OK, Sherri. This is good news." She truly was a nightingale. I began taking my pills, and in three weeks my symptoms began to disappear; my CD4 count went up and my viral load was undetectable. I couldn't believe it. They really found something that worked!
Relief, Grief and a New Beginning
After years of nothing but bad news and desperately holding on, I cried every day. I sobbed as I took the pills I lined up before my meals, seeing the faces of friends and people I had counseled or gave their HIV test results to and who didn't make it this far. It was a combination of relief and grief. Their faces have haunted me, and their stories have stayed with me to this day.
My death sentence was lifted. I could open the window of my life and look out on the world. No longer feeling limited, I made plans to move to sunny California. I just wanted to be happy after so many years in the gray cold of AIDS. I asked for a referral to an HIV specialist in Los Angeles. Dr. Judith Currier at UCLA, whom I'd briefly met in Boston two years prior, came highly recommended.
I moved to Los Angeles in August of 1999 and made an appointment at UCLA to meet Dr. Currier so I could continue my treatments and follow-up visits. When I met her, she looked familiar, but her name didn't ring a bell. She began with the standard questions about my family members' health. When she asked about my father, I said he died of myelofibrosis, and that he had been seen at the Mayo Clinic by a Dr. Silverstein.
Dr. Currier stopped taking notes. "That's my father," she said.
A memory came back: I remembered meeting him when I was with my father. My father had asked Dr. Silverstein whether there was something he could do for me, since I had HIV. Dr. Silverstein answered: "No, that's not my field, I'm done. But it is my daughter's."
Naturally, I asked Dr. Currier, "How's your father?"
Tears filled her eyes. "He just passed away a month ago from a massive coronary," she said.
We two women -- one a longtime survivor of HIV and one a longtime specialist in the treatment of HIV -- sat in silence in the presence of two remembered fathers, one a patient and one a doctor. That was how our journey began. It continues to this day.