Amanda's Story: How HIV made finding GYN care difficult

The Serenity Corner
December 1, 2017

HIV and health insurance

The call came on a busy afternoon, from a Family Practice office, referring a patient for a Gynecological procedure. The caller seemed unusually relieved to know that I did in fact, perform the procedure she was researching.

The young woman had apparently called many other GYN offices, but no one would agree to take this patient even though she had good health insurance. The procedure she needed does require specialized training and certification, which I have, but it isn’t exactly the GYN equivalent of rocket science. I’m certainly not the only one who could have helped this young woman.

"Amanda" is a pretty young woman in her 20s. She has a great job with a well-known company. Amanda loves music, has a great relationship with her family, and loves to experiment with her hair color.

She spoke softly at first, on the day that I met her. With a shy smile, she explained that she had moved from another state. Because of her difficulty in finding GYN care, she had almost decided not to move.  I had reviewed her medical history, and told her that I thought that we could get her procedure done promptly. It was at this moment that Amanda told me that she left something off of her paperwork. She lowered her head and said, “I didn’t write it down, but I have HIV.”

“Oh, okay,” I replied. “One of my grandchildren also has HIV. How are you doing?”  At that moment, it was as though the weight of the world was somehow lifted from her. Amanda visibly relaxed into her chair. She looked up, smiled brightly, and told me, “I’m taking a new medication, and I just found out that my viral load is undetectable!”

In that moment, I instantly knew exactly why Amanda’s doctor couldn’t find GYN care for her. Even with the best of insurance, no one would touch this young woman. She almost didn’t move to my very “red” state, which was her home. Though not particularly invasive, Amanda’s procedure involved multiple incisions to the skin and the careful use of very sharp instrumentation. The reason no one would touch her was those three little letters: HIV.

History of HIV/AIDS

I have, professionally speaking, grown up with this epidemic. I remember that first day, in the spring of 1980. I was a student nurse in the Chicago area. Radio station WKQX reported on a very serious, and very strange outbreak of pneumonia, affecting gay men. Men were dying in downtown Chicago. I wondered what this could possibly be.

The rest, of course, is history. The strange disease was first called GRID, then something called HIV/AIDS. We didn’t fear too much at first, of course, because this was a disease that other people got. It would never touch me, or anyone I loved. I would probably never see a patient with HIV. How wrong I was.

HIV came to affect anyone, male or female, young or old. It didn’t care whether you were a baby in Africa, or a young man in Indiana, or a Grandmother in California.  It didn’t care how you lived, or who you loved. In those awful years, everyone with HIV was going to die. This disease brought out the worst in us: hatred of others, fear, judgment, suspicion.  In some quarters, how one acquired this disease became very important. People with HIV must have deserved it, and they were the untouchables of society.

I was tested for HIV numerous times, in those years. I second-guessed every needle stick, all of the times that blood splashed in my eyes and in my mouth. I, and many of my colleagues, anxiously awaited the results time after time, wondering if the work I loved would cost me my life.

Slowly, and with the efforts of activists who would not be silenced, the tide would turn. Science would prevail. Antiretroviral medications were developed, which were at first, very costly and had terrible side effects. As time went on, better medications would come along, and people would demand access to these medications.  Now, the transmission of HIV can largely be prevented from mother to child, and between intimate partners. Current research focuses on a vaccine for HIV.

With new cases on the rise in certain areas, and among some populations — especially in localities which ban comprehensive education regarding human sexuality — we cannot be complacent. In the U.S., HIV rates declined from 2010 to 2015, but in Arizona, new infections increased by an alarming 35%, with most of these being among young people. Similar trends are seen in other “red” states such as Florida and Texas.

HIV/AIDS patients today have better prognosis, but still fight misinformation

My grandchild with HIV will live a happy, healthy life. In time, this child will grow up, play sports, experience teenage struggles, get a college education, marry, and become a parent. This child, and my patient Amanda, will likely outlive many all of my other patients who are HIV negative. I can honestly say: I would rather take care of a patient with HIV, than a patient with a condition which requires them to change their lifestyle, i.e. quit smoking, lose weight, or move one’s body.

It’s very simple. If Amanda continues to take her medication, she will have a long, healthy life. She will also continue her successful career, marry if she chooses, and become a mother and someday, a grandmother.  Her name will never appear on a quilt, unless her family makes an heirloom quilt for her.

For my family, and for Amanda’s, the struggle is no longer against a dreaded disease. These days, we still fight against fear, ignorance, and misinformation. The struggle today is against the ghosts of a disease past. To this end, we no longer hide.  We refuse to be afraid. We speak up, because our family is just like any other family.  Amanda is beautiful, talented, and lively.  She has HIV, but it does not have her. Her presence reminds us that the face of HIV looks just like anyone else. She could be my daughter, or your daughter.  She is anybody’s daughter.

Authored by:

JeanAnn Schwark
M.S., F.N.P.-C.