Suffolk World AIDS Day celebrants say life is all the recognition they need

Whether or not the federal government officially recognized World AIDS Day on Monday was far from the minds of those gathered to mark the occasion at Suffolk County government center in Hauppauge.

Either way, said Ashley Nicholls and several other attendees living with HIV, they are proof of what World AIDS Day has represented since the first one in 1988: a commitment to research, funding and education about AIDS and the virus that causes it. A disease in the 1980s often viewed as a death sentence is now considered a chronic condition.

"I feel like change starts and ends with me," said Nicholls, 28, of Riverhead, at the H. Lee Dennison Building, site of Suffolk's third annual World AIDS Day event. 

Nicholls, who was first diagnosed with HIV, the virus that causes AIDS, a decade ago, added: "I’ve challenged myself to be more open and transparent about my HIV status. ... If it touches one person, I’m grateful."

She and a handful of other people with HIV gathered in the lobby to share their stories of life-changing diagnoses, stigmas that upended personal and professional relationships, treatments that saved their lives and journeys of self-acceptance.

Suffolk County Executive Edward P. Romaine, several legislators, health care officials and advocates also attended the ceremony. Monday’s global recognition was the first one not officially observed by the federal government since the World Health Organization started the commemoration in 1988 when Ronald Reagan was president. President Donald Trump signed an executive order initiating the United States’ withdrawal from WHO on his first day of his second term.

"I think it has a tremendous impact when there’s silence from our leaders," said Kerry Thomas, executive director of Patchogue-based Thursday’s Child, a nonprofit serving thousands of Long Islanders living with HIV, spread through sexual transmission, drug use and birth.

"I won’t comment on politics," Thomas told Newsday before the event, "but I will say this day is extremely important, that we commemorate, that we honor and recommit to the work that needs to be done."

In an emailed statement regarding the decision to not formally recognize World AIDS Day, Tommy Pigott, the principal deputy spokesperson for the U.S. Department of State said: "An awareness day is not a strategy."

"Under the leadership of President Trump, the State Department is working directly with foreign governments to save lives and increase their responsibility and burden sharing," Pigott continued. "Earlier this year, we released a global health strategy aimed at streamlining America’s foreign assistance and modernizing our approach to countering infectious diseases."

Leona Rivers Sargent, who has HIV, said she was "surprised" Monday to learn Trump would break a decades-old tradition and not formally recognize World AIDS Day.

In the end, she said, "It really doesn’t matter" whether the federal government recognizes World AIDS Day, so long as "everyone like myself will continue to make a stand and continue to voice and be there for people, to let people know that this is not a death sentence."

There are 2,993 Nassau and Suffolk County residents living with AIDS as of last December, according to the state Health Department’s most recent HIV/AIDS Annual Surveillance Report. Long Island is also home to 2,792 people living with HIV.

New HIV diagnoses on Long Island have "stabilized" to 150 to 200 cases annually, according to Dr. Steven Hong, associate medical director of Northwell Health's Center for AIDS Research and Treatment in Manhasset. To him, World AIDS Day is a day to "commemorate and remember the tremendous progress that we’ve made in combating the HIV pandemic," with regard to both medicine and public perception, "and also remembering the millions of lives that have been lost."

"It’s a virus and it can infect any person," Hong said of HIV. Across the United States, he added, "it’s really infecting those who are socially marginalized, those who do not have access to care, people who are coming from different countries."