NEW BEDFORD — A global epidemic that has plagued the world for 40 years may be ending in the next decade, even as the world continues to battle the COVID-19 pandemic.
On World AIDS Day on Dec. 1, the Biden-Harris Administration announced its commitment to ending the HIV/AIDS epidemic by 2030, reiterating the government’s bipartisan mission to end the HIV epidemic. Similarly, the COVID-19 pandemic continues to drone on and change “normal” life.
Local medical professionals, who worked amid the COVID pandemic and the HIV/AIDs epidemic, as well as survivors of HIV/AIDS spoke about the comparisons between the two global health crises.
“As I followed the [HIV/AIDS] epidemic, it was rising exponentially,” Cheryl Barlett, CEO and registered nurse at Greater New Bedford Community Health Center said. “People were very fearful, people died very quickly in a 12-month period.”
Both were first known to affect a specific group, resulting in discrimination. In the 1980s, HIV/AIDS was announced as a gay men or intravenous drug user disease. According to the CDC, COVID-19, caused by a virus named SARS-CoV-2 was discovered in December 2019 in Wuhan, China leading some to label it as the “Chinese virus.”
Barlett noted it affected a significant population of men who either identified as gay or not. At the start of the virus, otherwise “healthy men” were contracting pneumonia, skin blotches were surfacing along with other uncommon infections. She said the most tragic part was families learning their children or loved ones were gay while critically ill with AIDS, raising emotional and psychological concerns on how to bring a family together over the bad news.
“Things were still pretty closeted,” Bartlett said.
Memorials for lives lost to HIV/AIDs
In hospitals and healthcare systems, policies were put into place. Bartlett said like COVID-19, staff were instructed to treat symptoms without knowing the underlying cause.
Nantucket was a hotspot for AIDS when it first emerged and a memorial service for 40 to 50 lives lost was held in the quieter off-season, Bartlett said.
“The reverend asked people to list names of people to remember, and everyone listed four to five names,” Bartlett recalled. “I remember thinking, this is really big. This seems bigger than just a small memorial, what can we do as a small town and small community?”
Lessons learned from AIDS crisis:Provincetown rallies to fend off COVID delta variant, advances study of breakthrough cases
When COVID-19 hit, officials at local, state and federal levels brought attention to it, although former President Donald Trump did not immediately address the severity of the virus. However, the vaccine was pushed quickly and proven effective after just one year. For those who contracted AIDS, it wasn’t addressed on a serious level by former President Ronald Reagan until 1985, four years after it was first identified.
Dr. William Brandon, deputy medical director of Manet Community Health Center, said he was involved since the beginning of the HIV/AIDS epidemic as a medical student.
“I knew something was going on before the virus was identified,” Brandon said.
Health officials agree that while both viruses deserve equal attention, COVID-19 has overshadowed the ongoing battle against HIV/AIDS.
Bartlett said while COVID-19 treatment took center stage, there was a lot less attention being paid to HIV/AIDS and health officials were not paying attention to rising numbers. With most elective procedures and office visits minimized, there was a lack of access to regular services and treatments. Those with HIV/AIDS had a higher risk of contracting COVID-19, requiring careful monitoring, which was offered through Telehealth check-ins. Labs were not monitored as closely, but providers made sure those with AIDS stayed on their medications. COVID-19 affected women, forcing them to delay mammograms. Colonoscopies and cancer screenings were delayed the most. Bartlett noted that diabetes was a commonly delayed diagnosed condition due to the pandemic.
“The impact was significant, but different” said Bartlett of the two global health crises.
On a societal level, residents were evicted due to contracting AIDS, similar to how residents were evicted due to lack of rent from unemployment from COVID-19.
Once treatments for HIV were introduced, it began to mitigate the spread, but there is still no vaccine for it.
“[HIV] treatment is successful now, and it’s not as big of a deal,” Brandon said, while also noting the lack of a vaccine.
Brandon said he still gets new HIV patients and wonders how they could have contracted the virus decades after larger outbreaks, but he said he is still there to help his patients.
“It’s human nature to feel frustrated while caring for those who were ignorant to the cause,” Brandon said. “With HIV, we had a way to control it and have good medicines now. With COVID-19, it was uncertain and anxiety-provoking. Now, the vaccine is the easier solution to deal with COVID.”
A community not receiving the attention it deserved
Brandon was struck by the AIDS virus because it was more prevalent in gay men in heavily populated areas such as New York and California, which didn’t elicit the same kind of interest as any other disease. “President Reagan wouldn’t even say the word in the White House,” he recalled.
Brandon said the epidemic gained public interest in the first years due to the grassroots efforts of gay people demanding it be taken seriously.
Liz DiCarlo, a registered nurse and LGBTQ+ activist, recalls that the disease was downplayed and not given enough attention because of the group it affected.
“Homophobia existed within society during the ‘80s,” DiCarlo said. “It stopped government from responding to an epidemic that was right in front of them.”
DiCarlo said that in the SouthCoast, it took a long time for gay men and women to be outside and comfortable in community.
Bartlett served as director of clinical services on Nantucket as well as the infection control nurse. When HIV/AIDS first broke out, she took care of patients with communicable diseases to prevent transmission between patients and staff.
“People wouldn’t take care of them [with AIDS] versus COVID, where everyone needed to be taken care of,” Bartlett said.
She recalled a 20-year-old male dying because no one would care for him or enter his room for fear of transmission. Bartlett said she fought with the hospital for dignity and respect for those dying.
Health officials agreed that while it was prominent in the gay and drug user communities, people began to realize it affected more than that. Officials said that men, who were either closeted gays or IV drug users, were unknowingly contracting the virus and bringing it home to their wives and passing it along to future children.
“Most heterosexuals didn’t care about the HIV pandemic, they said it didn’t affect them,” DiCarlo said. “[The issue was] not only their own homophobia but transmission. They learned about IV and sexual partners and children born to drug using women. People didn’t think it would affect them; we didn’t do anything, we didn’t prepare, we didn’t talk about the reality of how it was transmitted.”
IV users: the next affected population
“In New Bedford, it was clear that it was affecting gay men, but it was also very clear that IV users were being impacted tremendously,” DiCarlo said.
DiCarlo said as the affected populations expanded, local organizations began reaching out not just to active drug users and members of the gay community. They developed a community of outreach workers who went into bars and places with sex workers and worked to educate people at nonprofits and churches to try and get prevention education out there.
“The twin epidemics in New Bedford were very clear,” DiCarlo said. “We needed to focus on substance abuse as well as sexual practices.”
According to a 1996 Standard-Times article, 20,351 New Bedford residents voted against a proposed needle exchange program while 9,390 voted in favor of the program designed to slow the spread of AIDS and HIV by exchanging clean needles for used ones. Massachusetts Department of Public Health data showed that 73 percent of AIDS cases in the city were attributed to IV drug use. There were mixed responses from representatives on the program.
Linda Spinner, HIV/AIDS activist, told her story at the World AIDS Day event held by the South Coast LGBTQ Network.
“Woman didn’t get AIDS, only drug users,” Spinner said. “Pandemics are now endemic.”
History of the HIV/AIDS virus on the Southcoast of Massachusetts
The first cases of HIV/AIDS emerged in June 1981 when the CDC published an article via the Morbidity and Morality Weekly Report (MMWR) on a rare lung infection similar to pneumonia in five young previously healthy gay men in Los Angeles, California. By the time the report was published, two of those men had died and the others would die shortly after. The fatal condition was reported as Acquired Immodeficiency Syndrome (AIDS) and began a publicized epidemic.
On the SouthCoast, after national breakout cases such as Ryan White’s blood transfusion case, friends and family begin to heal after losing loved ones to the virus. According to the South Coast LGBTQ Network, Healing Light Productions started raising money “from the heart” through musical concerts in members’ backyards and donations from individuals for holistic treatments for people with AIDS including herbal remedies, massage therapy, and acupuncture; these concerts and drag shows continued to inspire, support and educate the community in larger venues over the next ten years.
In the first decade, development of HIV/AIDS grew rapidly on the South Coast.
In July 1988, Patrick Manning was the first openly gay man who made a significant impact as an advocate for people with AIDS on the SouthCoast. A Freetown native and resident of Provincetown during the last decades of his life, Manning passed away on May 28, 2019.
During this era, New Bedford saw an influx of treatments, conferences, programs and organizations bring light to the disease. AIDS Service Organizations (ASO) Project Care opened in New Bedford and Project Aware was established in Fall River. Staff provide counseling and testing, meal delivery, case management, housing assistance and HIV education to agencies and community groups. The Alliance of Gays, Lesbians and Supporters (AGLAS) held a conference in New Bedford focusing on the HIV epidemic and preventative education strategies as well as HIV counseling and testing in methadone clinics and family planning locations.
In July 1989, the Community Working Group on AIDS Education (CWG) started street outreach in New Bedford and distributed more than 25,000 leaflets and posters in English, Portuguese, and Spanish throughout the city and at summertime community events. In November, Treatment on Demand (TOD) launched in New Bedford by recovering addicts and allies to combat substance abuse and HIV/AIDS by building a broad-based movement to work for effective prevention and accessible treatment.
The Standard-Times and local media outlets continued coverage of the disease and those in the community it affected to break through the stigma and spread community support. Grassroots organizations spread awareness and education. A needle exchange program was approved by the city council only to be vetoed by the mayor, with continued community efforts to promote clean needle exchange.
Moving forward: What’s next in the fight against HIV/AIDS
Today, approximately 1.2 million people in the United States have HIV, according to federal statistics from HIV.gov. About 13 percent of those affected are not aware and need testing. New cases continue to develop, as there has been a 21 percent increase from 2009 to 2018. The “U=U” campaign refers to those with HIV who achieve and maintain an undetectable viral load, the amount of HIV in the blood, by taking antiretroviral therapy (ART) are untransmittable.
Year 2030 is the current goal for ending HIV/AIDS. Treatments are used as a preventative, including PrEP, pre-exposure prophylaxis. Dr. Donald Rice, infectious disease specialist from SSTAR in Fall River, recommends taking the once-a-day treatment to prevent HIV, as it is 80 percent effective against drug use and 99 percent effective against sexual exposure. Any provider can prescribe the treatment for all sexually active adults and adolescents. If acquired through getyourprep.com, the entire treatment can be covered.
“If you catch it early, in long-term health, there will be less chronic health issues,” said Shabana Naz, chief medical officer at GNBCHC.
Between 2015 to 2019, several medications have been introduced as treatment, which Naz said is good to have choices. For once-per-day treatment, she said there are less pills to consume which reduces toxicity.
“We’re not in the ‘90s or ‘80s, there are meds to help us,” Naz said.
Currently, future treatments such as the IPM dapivirine vaginal ring for women and oral medications are in the late stages of development.
Seven Hills Behavioral Health currently offers clean needle exchange programs in Fall River, Fairhaven, Dartmouth, Wareham and Taunton but New Bedford is off-limits for now.
Standard-Times staff writer Kerri Tallman can be reached at [email protected]. Follow her on Twitter at @kerri_tallman for links to recent articles.
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