In March 1983 I wrote an essay, “1,112 and Counting.” And in October of 1983 I wrote one, “2,339 and Counting.”
What am I thinking now that 100,000 has been reached? Pretty much the same things I railed against when I wrote those first two diatribes. I hesitate to list them, lest I be known as such a one-note wailer. But the same situations, the same deficiences, the same denials exist. Too many of us are still dying and still too little is being done by our governments, by our elected officials and by us.
[…] I try hard to fight against despair. I try hard to look at the more positive aspects. At last we have ACT UP, a growing nationwide contingent of effective scrappers. At last we have, in John James’ AIDS Treatment News, a superb means of networking regular and reliable information on the latest treatments. […]
We still live in a city run by a Mayor and a state by a Governor and a country by a President all of whom, along with just about every other elected official, consider those suffering from, or susceptible to, AIDS disposable. We still have no national gay and lesbian organization with any power. We still have a stingy number of lobbyists in Washington. We still have no national leaders. We still have a lesbian and gay population that lives mostly in the closet. We still have huge AIDS organizations that spend most of their energies helping people to die rather than fighting for us to live.
[…]
Ten years into an epidemic and so few have had so little effect in changing the mind-set of so many. And yet, I do think some sort of corner has been turned; it’s certainly better to get sick today than a few years ago. It’s certainly possible that many of us are going to live through this after all. That’s a wonderful gift.
But we’re not going to live through it without somehow finding the energy within our many lesbian and gay communities — and without building coalitions with the other AIDS-affected communities — to fuel this burst to the finish line. And the finish line, though it appears to be coming closer each day, may yet tum out to be a mirage. I worry that we’re so tired we may not find this energy, and die because of it.
[…] Oh, I have said all of this so many times and for so long.
But I have no choice but to say all of it again. So, for those of you who have been reading my words over these past long years, now that we have reached that awful and awe-full number of 100,000, there is nothing new I can bring to solemnize its arrival. I am still the one-note wailer. I’m grateful I’m still able to be here screaming, and I’m grateful I’m joined by many more screamers than were around when I started my caterwauling another lifetime ago. But I sure wish, as I’ve prayed from the beginning, everybody else was screaming too.
We’re heading for the last roundup, boys and girls. How many men and women are willing to stand up and be counted, at last?
— Larry Kramer, OutWeek Magazine No. 8, August 14, 1989, p. 38.
“This is excellent news for all children living with HIV.”
Until last month, HIV drugs for babies and toddlers came in hard-to-swallow pills or yucky-tasting syrups. But now, Cipla, a manufacturer of generic drugs in India, has created Quadrimune. Its pediatric formulation comes in strawberry-flavored granules that allow it to be sprinkled on food or mixed in milk, reports The New York Times.
What’s more, the drug will likely be priced at $1 a day.
The med could save thousands of lives each year, notably in Africa, where nearly 80,000 babies die annually because of HIV.
“This is excellent news for all children living with HIV,” Winnie Byanyima, the executive director of United Nations AIDS agency UNAIDS, told the Times. “We have been eagerly waiting for child-friendly medicines that are easy to use and good to taste.”
Which other cities have aimed for these targets, and how are they doing?
On the heels of World AIDS Day, New Yorkers have good HIV news to celebrate. The city announced it reached the 90-90-90 HIV targets set by the United Nations’ AIDS group, making it the first U.S. city participating in the “Fast-Track Cities” initiative to do so. What’s more, it reached the goals two years ahead of schedule.
The 90-90-90 targets are:
90% of people living with HIV know their status
90% of people diagnosed with HIV are on treatment
90% of people on treatment are virally suppressed.
As of 2018, New York City statistics show that 93% of New Yorkers with HIV have been diagnosed, 90% of diagnosed people are on treatment and 92% of New Yorkers on meds are virally suppressed, according to a press release from the city of New York.
A new survey and educational campaign called “Owning HIV” offer insight.
HIV stigma persists among young Americans, and many are not informed about the virus and its transmission, even as they engage in high-risk sexual behavior. Those are the top-line findings of a new survey among millennials (adults ages 23 to 36) and members of Generation Z (18 to 22). What’s more, the picture looks worse as the respondents get younger.
Just two examples from the survey findings: 28% of HIV-negative millennials said they’ve avoided hugging, talking or being friends with someone who has HIV, and 41% of HIV-negative Gen Z respondents said they were either not at all informed or only somewhat informed about HIV. Among HIV-negative millennials, that number falls to 23%.
Border Control Separating Kids from Parents With HIV
At today's meeting for House Judiciary Oversight of Family Separation and U.S. Customs and Border Protection, CBP Chief Brian Hastings acknowledged that a parent living with HIV is enough for border agents to justify separating them from their children.
He claimed that this was the "guidance" the agency had in relation to communicable diseases. But under questioning he did not indicate where the guidelines came from, nor could he explain why being poz would put someone's children at risk.
In one exchange, Rep. Jamie Raskin (D-MD) asked, "If a mother or father has an HIV positive status, is that alone enough to justify separation from their child?"
CBP Chief Brian Hastings replied, "It is because it's a communicable disease under the guidance."
"We have reports of kids being separated from their parents on that basis," Raskin continued. "Is that what we mean by communicable disease? It's not communicable from contact."
Hastings reiterated, "That's the guidance that we follow."
[...]
"I mean the flu is communicable. Would we separate parents from their kids if a mom or dad had the flu?" Raskins asks poignantly.
"We're not, sir" Hastings replies.
Although HIV is a communicable disease, transmission is relatively difficult, unlike the flu, tuberculosis, or measles. It's absolutely not transmittable via common practices like kissing, hugging, bathing together, or sharing silverware, and is primarily transmitted through anal or vaginal sex and reuse of injection drug needles.
Though most migrants experience treatment disruptions while in custody, anyone who is living with HIV but on treatment that's lowered their viral count to undetectible levels cannot transmit HIV to someone else, even through sex or injection drug use.
THIS WEEK ONLY: Support ACT UP with a limited edition vest for just $30!
These custom Levi’s vests originally retailed for $100, but now you can get one for $30 with code VEST2018, plus a free 30th anniversary ACT UP button! This coupon is good through Thursday, December 6.
100% of the proceeds support ACT UP NY and our ongoing work taking direct action to end the AIDS crisis.
You can also help by buying a T-shirt or button, donating, or coming to a Monday night meeting here in NYC!
I can’t forget the ways George H.W. Bush failed people with AIDS.
History will recall
George Bush did nothing at all.
I must have chanted those words hundreds times while protesting the Bush administration’s inaction on the AIDS crisis with ACT UP (AIDS Coalition to Unleash Power) between 1989 and 1992. ACT UP was founded in 1987 in the epicenter of the HIV epidemic in America — New York City — to demand action to end the AIDS crisis. Today it is remembered as part of the Reagan ’80s, but the reality is that much of the group’s most intensive work took place during the administration of George Herbert Walker Bush. With ACT UP, I marched past the Bush White House down a Pennsylvania Avenue not yet closed to traffic. I rallied outside his Department of Health and Human Services, his Centers for Disease Control, his National Institutes of Health. And in 1991, I shook my finger chanting “Shame!” half a mile from his family’s summer compound in Kennebunkport, Maine. More than 1,500 AIDS activists descended on the resort town on September 1 that year, bearing signs that charged Bush with a murderous neglect of the AIDS crisis, along with a 50-foot banner with a 32-point plan to end it.
The transition from the Reagan presidency to the Bush one was more one of tone than substance when it came to AIDS, a kinder gentler indifference. Messaging that repeatedly pointed to “behavior change” as the solution, without backing prevention programs known to work. A lack of leadership from the top. No central strategy. “He was not doing enough as a leader,” Urvashi Vaid, the executive director of the National LGBTQ Task Force during the Bush years, told Pridesource after Bush’s death. “I think that those pressures and protests led by ACT UP all over the country … that pressure is what pushed both members of Congress and the administration to do whatever it did. I can’t say that enough.” Added ACT UP founder and playwright Larry Kramer, “I will not give [Bush] credit for anything. He hated us.”
THIS WEEK ONLY: Support ACT UP with a limited edition vest for just $30!
These custom Levi’s vests originally retailed for $100, but now you can get one for $30 with code VEST2018, plus a free 30th anniversary ACT UP button! This coupon is good through Thursday, December 6.
100% of the proceeds support ACT UP NY and our ongoing work taking direct action to end the AIDS crisis.
You can also help by buying a T-shirt or button, donating, or coming to a Monday night meeting here in NYC!
Researchers at the University of Rochester Medical Center in New York state received a $2.16 million federal grant to study HIV prevention among women of color. Specifically, the study will examine the use of the daily tablet Truvada as pre-exposure prophylaxis (PrEP), according to a press release from the university.
This is an important topic because Black women are at higher risk for HIV. In fact, they make up 30 percent of the female population but 77 percent of new HIV cases among women. At the same time, along with Latinas they are the least likely to take PrEP.
I’m facilitating @actupny Meth Group and we are working in coalition with several CBOs and the city Health Department, to produce a forum on methamphetamine @schomburgcenter on November 29, 2018 from 4 to 10 PM. The parTy boi, Meth & Health aims to raise community awareness, share info & identify needs. Y’all welcome, it is a free events, we are screening the documentary “parTy boi, Black Diamonds in Ice Castles” by Micheal Rice followed by 2 panels and a Network party with food. #NYCTinaForum2018. Link to Eventbrite: goo.gl/KAL1zd please share.
The issue is AIDS... where do the candidates stand on treatment research, housing, health care, discrimination? Your vote is a weapon... use it... we are at war. (Gran Fury, 1988)
Combine your vote with direct action to demand an end to AIDS. Check your voter registration, preview your ballot, and join ACT UP.
On October 11, 1988, ACT UP members from all over the country descended on the headquarters of the Food and Drug Administration in Rockville, MD, in an action they called “SEIZE CONTROL OF THE FDA.”
ACT UP activists demanded that the FDA make its drug approval process faster and more ethical in order to get more experimental drugs into the bodies of people who needed them. They demanded that drug trials include women, people of color, IV drug users, and all other people with AIDS who had traditionally been excluded from trials and therefore denied access to new drugs.
As a result of the action and ACT UP’s continued lobbying, the FDA adopted ACT UP’s proposed structure for drug trials, Parallel Track, which greatly expanded access to experimental medicines.
Read more about the action here.
Join the fight! ACT UP still meets every Monday at 7pm at the LGBT Center in NYC.
When HIV-positive people leave prison, they often lose access to medical care and the drugs that suppress the virus. It's a missed opportunity in the fight against HIV, public health advocates say.
When people living with HIV walk out of prison, they leave with up to a month's worth of HIV medication in their pockets. What they don't necessarily leave with is access to health care or the services that will keep them healthy in the long term.
That is one of the findings of a study published Tuesday in PLoS Medicine. The study was among the first to follow people with HIV from jail or prison back into the community. What they found was that most people — more than half — fell out of care within three years of leaving prison.
[...]
"[HIV] is a chronic disease," says [co-author Dr. Frederick] Altice, who has been treating people with HIV since the early 1980s. "People don't need services six weeks after release. They need them immediately."
Indeed, the study suggests that the post-prison-release period may be key in the fight to eliminate new transmissions of HIV, says Dr. Cato T. Laurencin, a professor at the University of Connecticut and founding editor of the Journal of Racial and Ethnic Health Disparities, who was not involved in the study.
"We are now talking about the fact that we believe that we can end new cases of HIV in our lifetime," Laurencin says. "We need to see changes in this setting. And if we're not, that tells us we're not on course."
Connecting data to care
One in 6 people living with HIV is incarcerated at any one time, according to a 2009 study. The good news is that these people often get treatment behind bars. Some studies show 71 percent of people leave prison with HIV that is so well-controlled, it is undetectable with current tests.
The bad news is that once people leave prison, engagement in care and associated HIV viral control drops precipitously, as the study shows.
Indeed, one year after leaving prison, among the 1,094 study participants, only 67.2 percent were still in care. The following year, that number dropped to 51.3 percent. By the end of the third year, only 42.5 percent were still in care.
That's for everyone in the study. When researchers teased out people who were re-incarcerated from those who weren't, retention was higher; 48 percent of the re-incarcerated had care, while 34 percent of those living outside did.
But fully controlled HIV was more common in the people on the outside, the study showed.
"This is the paradox," says Altice. "People who are re-incarcerated didn't have good viral suppression. It's much better for health [to stay out of prison]."
Upping the odds of good health
So what made the difference? When the researchers looked at what differentiated the people who stayed in care from those who didn't, a few things stood out. People with health insurance were more than twice as likely to achieve viral suppression as those without.
Second, those with access to intensive case management — services that can connect people to support groups, drug treatment programs, housing and other services — were twice as likely to still be virally suppressed at the end of three years as those without it. Even those who received only five case management visits were still 69 percent more likely to be virally suppressed at the end of the study.
[...]
"This is a best-case scenario," says [Dr. David] Wohl. "The services described in this paper don't exist in North Carolina."
Indeed, like many Northern states, Connecticut expanded Medicaid. And it is among 16 states that have changed their rules to suspend rather than cancel Medicaid when people enter prison. Many states cancel Medicaid enrollment, requiring recently incarcerated people to navigate reapplying. Other states have extremely limited eligibility for Medicaid that might exclude adults without disabilities.
"This also tells me something else," says Altice. "This should be a group targeted for Medicaid expansion."
For the University of Connecticut's Laurencin, those interventions could start to ameliorate the impact of HIV on communities of color. Seventy-eight percent of the people in the study were black or Latino. Only 1 in 3 of them stayed in care. As HIV becomes more concentrated in communities of color while effective treatment and prevention more often go to white, middle-class Americans, this study should signal an "all hands on deck" approach to helping this group of people, says Laurencin.
Kelsey B. Loeliger, Ph.D., a medical student at Yale School of Medicine and lead investigator of the Yale study, concurred. And all the study authors, as well as Wohl, made some variation of this statement as well: Maybe we should look at locking up fewer people.
"Prison reform is needed in so many ways," Loeliger says. "So much is needed across the board for this population. If you come at it from a strict medication-adherence standpoint, that's such a small piece of the puzzle."
Getting treatment
When Bryan C. Jones walked out of an Ohio penitentiary in 2008, he did so with two weeks of HIV medications, a virus that had grown resistant to those drugs, and an immune system that was shutting down.
He was sick and he knew his meds weren't working. So when he boarded the Greyhound back to Cleveland, he left the pills in a trash can in the one-room storefront bus station.
"I knew I was resistant to those meds they gave me," Jones, now 58, says. "And I knew that prison didn't give me anything to further my acceptance of living with HIV. No one [knew] my status. [And] I [wasn't going to] walk around with meds. It just didn't make sense to me."
But Jones was one of the lucky ones. A few weeks after his release, he returned to his old HIV doctor, paid for with Ryan White Care Act funds while he waited for his Medicaid to be approved. His doctor put him back on a regimen that worked a little better. Jones started educating himself on the virus and his options. He started telling people he had HIV.
A case manager connected him to permanent housing.
That "made all the difference," Jones recalls. "It was a place I could freely take my meds and not have to worry about people seeing it in the fridge or having to dig it out of a drawer."
He also stayed in substance abuse treatment. Then a new medication came out that his virus wasn't resistant to. Now, a decade later, Jones is still a regular at his doctor's office. He started bringing HIV support groups to the penitentiary where he had been housed. He runs another support group and advocates for himself and his friends. His HIV is so well-controlled on a newer drug combination that his doctor hasn't been able to detect it in his blood for six years.
In the process, he found a greater purpose.
"See, care can't keep you in care," he says. "You've got to have something else. That's the tie that binds."
on this national gay men’s hiv/aids awareness day, we echo stephen’s message to people living with hiv.
“I’m talking to myself when I say, know that you deserve the entire universe and then some. you deserve happiness, joy and peace. Know that you deserve unconditional love regardless of your HIV status, as impossible as it might be to imagine sometimes.” - stephen acosta
