How to Avoid Rare HIV-Related Diseases: Get Tested, Start Treatment

Tamika Thomas
Selfie by Tamika Thomas

Tamika Thomas' day starts like many of ours. She wakes her kids up; she gets them dressed; and she sends them off to school. The night before, she helps them with their homework. She is a mom like any other mom. She cooks. She cleans. She shops at local markets and enjoys the local library. All of this is possible because the city where she lives is wheelchair friendly enough for Tamika to get around. And, when the wheels of her motorized wheelchair get stuck in the snow, the people nearby are friendly enough to help. Like most of us, Tamika is on a mission to live her life.

Tamika's message is simple. "Get tested for HIV, and this will not happen to you."

Tamika has HIV, and HIV is the reason Tamika is in a wheelchair. Her right leg is weakened to the point that she can stand, but she is unable to walk. Her right hand can grasp objects, but she is unable to let them go, which prevents her from performing tasks with both hands that most of us take for granted. Tamika's HIV went undiagnosed for years, and as a result, she developed a condition called PML.

PML or progressive multifocal leukoencephalopathy is a rare and sometimes fatal disease that essentially "eats" away at the white matter in the brain. It is caused by the John Cunningham virus (JCV). In a normal human immune system, JCV is usually suppressed and harmless. However, when the immune system is compromised -- often by conditions that are caused by chronic immunosuppressive medications (chemotherapy, for example) taken by people with diseases such as Hodgkin's lymphoma, multiple sclerosis, or other autoimmune diseases, including patients who have had transplants -- PML can be left unchecked to wreak havoc on the brain. There is no cure for PML, although successful use of antiretroviral therapy to treat HIV has been shown to send the disease into remission. For people like Tamika who survive the condition, the effects of PML are permanent.

A 2007 case study titled "When a Stroke Is Not a Stroke" offers these interesting, yet grim and sobering facts:

PML occurs in approximately 5% of AIDS patients; the incidence has changed little since the introduction of HAART [highly active antiretroviral therapy]. In the pre-HAART era, PML was the first AIDS-defining illness in 25% to 50% of patients. ... AIDS patients account for 85% of PML cases. ... In persons with AIDS, PML manifests primarily when the CD4+ [T-]cell count is less than 100/mm3, although 25% have a CD4+ cell count greater than 200/mm3 at the time of presentation. Prognosis is generally poor regardless of treatment, with a mean survival of 4-6 months after presentation.

In the case of Tamika, undiagnosed HIV left her immune system vulnerable to the ravages of PML. Previously, Tamika was able to walk and fully use her right arm and hand. Tamika tells me that it all started one day late in 2010. She began having trouble using her right leg, but originally thought nothing of it. She says her right leg began moving a little sluggish, but she just thought it one of those "things" that happen to us all.

Eventually, her right arm became sluggish too. Believing that she may have had a stroke, Tamika took herself to the hospital. The hospital also believed that Tamika had a stroke and treated her as a stroke victim. At this time, Tamika was still able to walk and still had most of her normal mobility. She was soon released and sent home to do physical therapy. But Tamika's condition grew worse. This was inconsistent with a stroke diagnosis.

Tamika began losing more mobility on her right side and went back to the hospital. This time they gave her a diagnosis of lupus. Before returning to the hospital, Tamika had wanted to be proactive about her condition, so she started researching what else could be causing it. She read about a rare condition called PML that seemed consistent with all of her symptoms. Tamika mentioned her suspicion to the doctors, but they thought they knew better and insisted that she must have lupus. At Tamika's insistence, her doctors agreed to take a biopsy of her brain. At the same time, they ordered an HIV test.

What Tamika feared was true. She was HIV positive. After receiving this diagnosis, many find themselves in mental anguish, but Tamika didn't have time to sob. The worst was not over: The biopsy of Tamika's brain showed the presence of what she had suspected; her brain was severely damaged by PML. Thus, at nearly the same time, Tamika learned that she had two life-threatening diagnoses: undiagnosed HIV, which had allowed PML to occur.

Several procedures were conducted to treat Tamika's PML. Complications developed. A blood clot in Tamika's leg traveled to her heart, causing her to go into cardiac arrest. Tamika was stabilized, but she was near death, so doctors placed her in a medically induced coma. Once she was stable enough, Tamika was sent to hospice at home because her doctors thought they could do nothing else. She was sent home to die. PML is, after all, usually fatal.

Usually, this is where the story would end. But Tamika did not die. Miraculously, Tamika kept on living. She never gave up. Even in a coma, she just would not give up. Tamika eventually felt strong enough to emerge from the coma. She survived the darkest hours.

When Tamika came out of her coma, she found herself with severely diminished use of her right side, suffering the effects of PML while dealing with the fact that she was HIV positive. Tamika slowly came to realize that if she had just been tested for HIV sooner, this whole never-ending ordeal could have been easily averted.

It has been eight years since the beginning of Tamika's ordeal. Today, she has grown accustomed to life in a wheelchair. She even makes jokes about it. But, what Tamika doesn't find funny is that people are continuing to leave themselves vulnerable to the neurological destruction caused by PML by not getting tested for HIV. Simply getting tested would have prevented all of this from happening to Tamika. She would have found out that she was HIV positive before developing PML, begun antiretroviral therapy, and presumably become undetectable. If only Tamika had gotten tested, none of the permanent neurological damage that afflicts her would have happened, and most likely, today, Tamika would be fine.

Tamika doesn't want anyone to think that they can get tested at any time and, if found positive, just take a daily pill and be OK. She also doesn't want people to think they are not vulnerable because they think they are not in a group that is highly vulnerable for HIV acquisition. Some may think, 'I'm not gay and I don't use drugs." However, according to the Centers for Disease Control and Prevention (CDC), in 2015, 8,800 new HIV diagnoses in the U.S. occurred through heterosexual contact, versus only 2,200 by injection drug use. That same year, of the estimated 1.1 million people in the U.S. living with HIV (38,500 of them newly infected), an estimated 162,500 or roughly 15% were unaware that they were HIV positive. These staggering numbers are punctuated by the fact that, in the same year, one in five people diagnosed with HIV also had an AIDS diagnosis.

Tamika's message is simple: Get tested for HIV now and start treatment as soon as possible before the worst can happen to you.

Aaron Anderson is an activist, consultant, and former talk show host. Aaron is also co-founder of ARISE (Association of Refugees, Immigrants, and Survivors of Human Trafficking Engage). He is from Cleveland and is now living in Detroit.