On National HIV Testing Day, advocates renew calls for knowing HIV status

HIV/AIDS advocates AIDS Coalition to Unleash Power, or ACT UP,  walk in the Pride March on Sunday, advocating for more affordable and accessible HIV prevention treatment.
HIV/AIDS advocates AIDS Coalition to Unleash Power, or ACT UP, walk in the Pride March on Sunday, advocating for more affordable and accessible HIV prevention treatment. Photo Credit: Charles Eckert

While New York City has progressed along an ascending trajectory regarding HIV treatment and virus suppression, advocates stress it is no time to become complacent about the epidemic.

More than 100,000 people are living with HIV in New York City as of 2016, and 20 percent of them don’t know they are infected, according to the Gay Men’s Health Crisis, an HIV/AIDS advocacy organization. Spreading awareness about the importance of knowing one’s HIV status and making treatments available to all demographics, advocates say, will be key to meeting the high goals set by New York’s elected officials to combat the epidemic.

The attitude toward HIV is very different from when the epidemic first hit, Dr. Gary Blick, an HIV/AIDS activist and medical professional, said via telephone. While the lack of effective drugs and their physically altering side effects perpetuated the stigma surrounding the rapidly spreading virus back in the 1980s, the population today, he said, should be more concerned with taking HIV treatments seriously and fighting complacency.

“People used to walk around with the mark of HIV on them, looking like they had wasted away,” Blick said, adding that watching friends succumb to the virus was a challenge specific to his time. “In today’s generation, people don’t know the dead and dying. This generation now is really taking it like it is no big deal.”

One of the crucial ways in which the rate of new HIV infections can be reduced is to push information and awareness about existing treatments into communities that have not been targeted so far, according to Mikola De Roo, vice president of advocacy communications at Housing Works, an AIDS services organization. 

Though there was a record decline in new HIV cases for all demographics of men in 2016, for example, the rates for women actually increased by 5 percent, according to the HIV Surveillance Annual Report released by the city department of Health and Mental Hygiene. Ninety percent of those were black and Latina women, the report adds.

The HIV prevention treatment, called Pre-Exposure Prophylaxis, or PrEP, has not necessarily been pushed toward women to the same degree that it has been toward men who have sex with men, De Roo said. “There needs to be targeting for specific populations for it to hit home,” she added about reducing rates across the board in the city.

“HIV doesn’t discriminate in that regard,” she said of the ability of the virus to affect people regardless of biological sex and sexual orientation. While PrEP has been marketed to LGBTQ men, she added, that doesn’t mean women can’t also benefit.

While New York City and state have made successful, concerted efforts to push information about PrEP, the affordability of the medication can be weighed down by bureaucracy, yet another challenge to make it accessible to the masses, she said.

Fighting against cost prohibitiveness is Stephen Helmke, a member of the AIDS Coalition to Unleash Power who represented at the NYC Pride March on Sunday. He denounced the pharmaceutical giants that disseminate PReP, Gilead Sciences, adding how the drug’s unaffordability at up to $1,500 per month makes it inaccessible to those who need it to survive.

“Gilead is the bottleneck through which all HIV prevention must flow,” Helmke said derisively, adding how the high prices have made HIV treatment into an “unsustainable system.”

Truvada, brand name for PrEP, is the only Food and Drug Administration-approved anti-HIV drug so far, patented by Gilead Sciences. While it is covered by most insurance programs, those who lack health insurance will have a hard time accessing it on a regular basis, Helmke said.

Gilead offers cost assistance programs for Truvada, including a copay coupon program capped at $4,800, according to spokesman Ryan McKeel.

“Importantly, for people with no insurance who are financially disadvantaged, we exhaust every effort to ensure free medication and other assistance to those who qualify,” he said in an emailed statement.

McKeel added that Gilead remains in “regular dialogue” with elected officials, advocates and physicians to address affordability challenges for access to PrEP. One of them, McKeel said, is a lack of awareness of the role of the treatment in HIV prevention. Others include a lack of access to and experience with health care services, he said.

In the first quarter of 2018, McKeel said approximately 167,000 individuals take Truvada nationwide.

Gov. Andrew Cuomo has a goal of reducing new HIV infections in New York state to just 750 by 2020, by way of his “Ending the Epidemic” campaign announced in 2014. The last decline recorded in New York City for new infections was from 2,493 in 2015 to 2,279 in 2016, an 8.6 percent decrease, according to the city Department of Health report.

In order to get to Cuomo’s projected goal, sexual health will need to be part of every New Yorkers’ primary care, DeRoo said. It starts, she continued, with testing and prevention.

Partaking in frank, nonjudgmental conversations with one’s medical health care providers will be a start, De Roo said. For example, it is revelatory to many that if HIV is undetectable in the body due to ongoing antiretroviral therapy or ART, then it cannot be transmitted to another person, also known as Undetectable = Untransmittable or U=U, De Roo said. The efficacy of the therapy responsible for U=U was confirmed by the Centers for Disease Control in September.

“The city and state got on board with those messages and making that common knowledge is going to make a huge difference,” she said. The antiretroviral therapy “is effectively making people’s HIV states neutral if they are on treatment.”

Knowledge, as they say is power: “Greater attention needs to be paid to distributing information and also to what can do for you. ”

To find a testing site: cdc.gov.

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