People end up not being tested for HIV for many reasons.
Fear of doctors, needles or the cost. Not knowing that you are someone at risk for acquiring the infection. Or a hesitancy to even consider the implications of a positive result.
Since the early 2000s, Nancy Glick, an infectious diseases physician at Mt. Sinai Hospital and HIV medical director at Access Community Health Network, has focused much of her energy on making HIV testing a routine part of every patient's medical regimen, and removing its stigma.
"A lot of our efforts have been in the emergency department," Glick said. "We just talk to patients [and say], 'This is a really routine part of your medical care.' Just as people are expected to know their blood pressure or cholesterol, you should also be getting screened for HIV."
Many in Mt. Sinai's patient population are underserved, and the emergency department may be the only medical facility they visit, which is why Glick and her colleagues are committed to make sure they are tested there. Testing is widespread in other parts of the hospital, too.
"With our internal medicine and family medicine departments, we've really had a good rate of success, especially as we work closely with the medical residents, and tell them, 'If you admit a patient and you know that an HIV screening is not part of their medical record, just offer them testing.'"
There is little doubt that widespread testing is still needed. Twenty-eight percent of the hospital's patients who have AIDS come into care with a full AIDS diagnosis, Glick said.
"In 2001, 42 percent of those patients came in with an AIDS diagnosis," she added. "We do know that we are reaching people sooner, finding and diagnosing them when their illness is not so far advanced. But, still, more than a quarter of that population have that diagnosis when they come in."
Patients don't usually receive counseling before the test. Instead a physician obtains the patient's consent and orders it administered as part of the examination routine. The test is sent to the lab and a result usually is back within 60-90 minutes. Should the examining physician not wish to disclose a positive result to the patient on their own, they can call on one of three patient "navigators" who will also help arrange the patient's follow-up care. About 350 patients are currently active in the program.
A long-term issue with testing technology has been that HIV usually could not be detected until weeks, or even months, after patients were infected. But a fourth generation test now allows physicians to diagnose someone in the window period when they are sero-converting, Glick said. That's the test now administered at Mt. Sinai.
"It may be a week to ten days after they are infected with HIV, at a time when they are most contagious. They may come in with a viral illness—fever, rash, lymph nodes swelling—and they can get tested at that point. We can help them to prevent transmitting HIV—that's the most contagious they'll ever be in their infection—and also get them into treatment quicker."
Glick said that she's seeing a number of infected patients come in who are older.
"Even though CDC recommends testing up through age 64, we've found people up through their late 60s and early 70s that are HIV positive. No one thinks to test them because they're not who you'd think would be at risk for HIV. …They may not currently be sexually active, but they may have had exposure ( years before ) and were unaware of the associated risks.
"I had a situation with an 85-year-old man, who was HIV-positive and living in a nursing home and asking for Viagra. There's a whole kind of other world going on in long-term care facilities. There's a whole lot of sexual activity going on in them sometimes. That's something we don't talk a lot about."
The diagnosis is "almost always a surprise to people—sometimes less of a surprise, sometimes more. We try to make sure that they get into care and get them enrolled into ADAP or Ryan White programs right away. Once they get to the clinic they are connected to our case managers as needed. If they fall out of care—say they miss a visit or two—we reach out to them," Glick said.
While the initial diagnosis can be traumatic for a patient, the actual treatment for HIV no longer has to be, Glick said. "A diagnosis of HIV is 'better' than a lot of other diagnoses than are given today. … We tell people, 'If you're a 20-year-old you should almost have a near-normal life expectancy, if you get treatment.'"
But she did not underplay the fidelity a patient with HIV must maintain to their medical regimen.
"It's a hard line to walk," Glick said. "What I tell people is, 'This is a disease you have to deal with. It's like being a diabetic. You can't ignore it. If you ignore it, you'll get sicker and it won't go away.'"
Patients now have options to take one pill a day made up of three or four medications. "They have nothing like the side effects you used to have," Glick added. "There's some strange dreams, dizziness or GI side effects, but I find that with most people, we can find a regimen that they can tolerate and take easily. For some people, it might mean two or three pills a day.
"When people get into trouble is when they skip it. You have to do it or not do it. Most of the people I see are on medication and it's not interfering with their life. They are taking it daily and doing well."
Indeed, for many of Glick's patients, contending with the HIV infection itself may end up as the least of their concerns, according to Glick. Many patients face numerous barriers from their day-to-day lives, among them unstable housing, substance use and abuse, untreated mental illness and the threat of violence. Often, their employment status can also have a hand in their well-being.
"We've had individuals that have been out of care for a while or inconsistently in care, and once they were able to obtain employment, they're showing back up in the clinic," said Monique Rucker, who coordinates the patient navigators.
"And, on the other side of that, some people have employment that is so tenuous that if they miss a day of work they will lose their job," Glick added.
She said that, even though the stigma of HIV infection has diminished over the last 15 years or so, it still remains a problem for the populations she serves. "There are still issues around being gay, who you're sexually active with, where you got it from and acceptance within family and religious communities."
Mt. Sinai receives funding so a navigator can sit down with a patient to determine what barriers may impede their coming to appointments and receiving proper care, according to Rucker. "There's an actual assessment. A navigator goes through all those things, and literally looks at the basic needs of the individual that are not being met."
Another frequent barrier to testing is that patients sometimes think that they have been tested when they have not. Many people assume that they are being tested for HIV as a matter of routine when they have blood drawn as part of a physical or treatment for another illness. "There should not be that assumption—people should go ahead and ask," Rucker said.
"It's not going to be done automatically," added Glick. "There has to be some kind of consent, given either verbally or when you sign in to your doctor's office. Many people think that when they take your blood they are looking for everything, but it's usually meant for specific tests."
Glick said that everyone should be tested at least once, and that sexually active people should do so at least twice a year.
"People are so often afraid of being tested, but you can't really put your head in the sand about it," she added. "If you're positive, it is treatable and it's not a death sentence. And if you're negative, there are great ways to stay that way."
