We asked Dr. Susan Buchbinder about the mafia, Getting to Zero, and being diagnosed with AIDS
Twice a month, the San Francisco AIDS Foundation program Positive Force hosts free The Dr. Is In events for our HIV-positive community. Dr. Neal Sheran, the Special Populations Clinical Chief at the HIV clinic at Mission Neighborhood Health Center, selects speakers for the event that share information about HIV health and wellness and other topics of concern for people living with HIV.
This month, Dr. Sheran invited Susan Buchbinder, MD, director of Bridge HIV at the San Francisco Department of Public Health (SFDPH), to give an update and answer questions about the Getting to Zero initiative in San Francisco—and more. Here’s what we learned.
What is Getting to Zero, and what is it not?
The idea for a Getting to Zero consortium came about at a 2013 community forum for World AIDS Day, shared Buchbinder. Following a series of presentations by experts about HIV prevention, treatment and cure research and programs in the city, a community member stood up to ask the presenters—“This is all great, but are you working together?”
“We thought, yes, but not really,” said Buchbinder. From there, the consortium was born. Getting to Zero operates under the principle of collective impact. By bringing people together—from clinicians, to researchers, to community members, to HIV advocates—the consortium unites people under a shared mission to make the greatest impact possible on HIV in San Francisco. Mirroring the UNAIDS 90-90-90 goals for the entire world, the GTZ goals are to get San Francisco to: 1) zero new HIV infections; 2) zero AIDS-related deaths, and 3) zero HIV stigma.
Getting to Zero is not, shared Buchbinder, about ridding the city of people who are living with HIV or AIDS. “We don’t really like the term ‘ending AIDS,’ because some people interpret that to mean we’re getting rid of people living with HIV,” she said.
Buchbinder shared that when she was in medical school, people living with HIV and AIDS were dying every day because there were no HIV treatments that worked well. But now, we’re in a completely different place—with highly effective HIV therapies that suppress viral loads to undetectable levels for long periods of time and powerful HIV prevention options.
“It’s a new day,” said Buchbinder.
Where is the city now? The good, the bad, and the ugly
We’re making great strides in San Francisco in some areas, and lagging behind in others.
The good news
The number of new HIV infections has been steadily decreasing every year in San Francisco, no doubt influenced in a big way by PrEP, said Buchbinder. We’re down to a new low of 255 new HIV infections in 2015, with only an estimated 7% of people in San Francisco who aren’t aware of their status. Between 2014 and 2015, the number of new HIV diagnoses has decreased 17%.
We’re also seeing a decline in the number of people who are diagnosed late in their infection: 21% in 2012 to 16% in 2015. There have also been improvements in the number of people getting linked to care soon after being diagnosed with HIV, being retained in HIV care, and getting virally suppressed.
The number of people dying from HIV-related causes is on the decline, too. “We’re at a point where people are more likely to die from non-HIV related deaths than HIV-related deaths,” said Buchbinder. Although, she cautioned, it can sometimes be difficult to determine the root cause for why people die. Typical AIDS-related conditions—like pneumocystis pneumonia (PCP), or Kaposi’s sarcoma—are obviously HIV-related. But it’s also known that HIV-related inflammation is associated with conditions like heart disease, which can also lead to mortality.
Where we still need to make progress
“We won’t get to the end of HIV in San Francisco if we don’t address homelessness, substance use, and mental health here,” said Buchbinder.
In 2015, 10% of people diagnosed with HIV were homeless. Can you imagine, she said, trying to take medications and get the right kinds of care if you continually have to worry about your possessions or where you might find shelter every night?
The bottom line is that we need more services, she said, and that includes affordable housing options for the thousands of people who are homeless in our city.
Drug use is also an issue, with drug-related deaths much higher among people living with HIV than people who are HIV-negative. The issue is complicated, she explained, by the fact that many people use drugs as a way to cope with mental health conditions and other difficult life circumstances.
And, racial disparities are readily apparent in our city. Although on the whole, the number of HIV infections that happen each year are declining, there haven’t been any declines among African Americans. Young people are also disproportionately affected, with 30 – 39 year olds most affected by HIV, followed by 25 – 29 year olds.
Rates of viral suppression are also worse for some groups of people living with HIV—including women and transgender women, the Latinx community, African Americans, and people who are homeless.
The game plan
There are four main GTZ initiatives, with four subcommittees working on reducing HIV stigma, increasing linkage, engagement and retention in HIV care, rapid antiretroviral start for people newly diagnosed with HIV, and city-wide PrEP access.
On World AIDS Day, December 1, 2016, the GTZ will present an update on progress made toward each of these goals (check back on BETA for coverage).
Hey, wait. We’ve got some questions.
Community member: What about people who use drugs—are they being tested for HIV?
Dr. Buchbinder: The proportion of new HIV cases among people who use injection drugs in San Francisco is relatively small compared to other places in the country, like the East Coast. About 10% of people who use injection drugs are living with HIV. Our syringe access programs in San Francisco are able to keep new infections down. (Read what can happen when there aren’t needle distribution programs serving people who inject drugs.)
I was diagnosed with AIDS when my CD4 dipped below 200 cells/mm3, but it’s gone back up since. I’ve never had an opportunistic infection. Can I go back to not being diagnosed with “AIDS”?
I think we should get rid of talking about AIDS. Because, we used AIDS early on because we didn’t know what was going on. We didn’t even know what was causing it. At this point, you’re living with HIV or you’re not living with HIV. And if you are living with HIV, what’s your health status like and what can we do to improve it? I remember ARC (AIDS-related complications), I remember GRID.
You mentioned that you’re trying to reduce AIDS-related deaths. How is that possible? Doesn’t everyone eventually die?
We’re not trying to make people immortal. But we can work on improving people’s health so that they’re not dying earlier than people who do not have HIV. There was a study by Kaiser Permanente that showed that there’s still a 6-year survival gap between people living with HIV and HIV-negative people. Now, we have a new class of drugs in the last few years—integrase inhibitors—we’re getting new classes of drugs all the time, we’re working on a cure. I think we will get there, we’re not quite there yet. But it’s not like it was before where you had basically on average, ten years until you developed AIDS, 12 years until you died. We’re at a point where following people forward, it’s almost a normal life span but not quite yet.
You said that you look at the death certificates of people who die with HIV to determine cause of death. What’s the most common HIV cause of death?
I see a lot of times when the cause of death is categorized as ‘end stage AIDS,’ which actually isn’t very helpful. It’s people who aren’t on treatment, oftentimes there are issues with substance use, mental health issues, homelessness. You can tell that in part from the reading. There is very little PCP. There’s very little KS. There are a lot of cancers. Most of them are not thought to be HIV-related cancers, but some are. The most common specific diagnosis is lymphoma.
Is KS a form of cancer? If it is a cancer, it seems like it doesn’t act like a cancer.
KS is cancer, and it’s caused by a virus called HHVA. And a lot of cancers we’ve learned are caused by viruses. Like liver cancers can be caused by hepatitis viruses. In the early years, when we didn’t have effective treatment for HIV, it could go like wildfire. It was an awful disease. people would get internal KS in their lungs and their gut, and they’d bleed, and all kinds of awful things would happen. Now, if you have KS you can keep that under better control.
It’s a different kind of cancer. It’s a weird slow-growing cancer that we see in elderly men in the Mediterranean. The incidence of KS is very low, but it does still exist. The KS virus is probably transmitted sexually, but with KS the way it works is that as long as you’re not severely immune suppressed, KS is very unlikely to happen. Even if you have the virus, it’s not guaranteed that you’ll get KS.
I notice that some of your slides don’t have PEP (post exposure prophylaxis) included on them, but that’s something people should be aware of, and know how to access.
I agree. People should know about PEP. If you use PEP a few times, you should be on PrEP. But here are people who—something happens, and they need to get PEP right away. We need easy access to it. You have 72 hours, but that’s the outer limit. The sooner you start it, the better. I wish there was something like Plan B, for PEP. You could just go into the pharmacy and get it.
Do poppers have any bad effects on health? Either for HIV-negative or HIV-positive people? And is there any relationship between popper use and HIV risk?
Poppers are not causing people to die. In the early years, they thought KS was caused by poppers—but it’s not. We don’t have very clear information on popper use causing clear bad health outcomes. For some people, there are respiratory problems. But we don’t really know the extent to which new HIV infections are driven by popper use. Because if you’re using poppers, you may be using PrEP, and then you’re still protected.
People who use poppers may just have more sex, that’s more intense, and with more partners. So those things, but not necessarily popper use itself, can increase risk for HIV.
I heard someone say the other day that the Russian mafia is responsible for most drugs that are brought to San Francisco. Is there any evidence of that? And if it’s true, how can we fight that?
That is not my area of expertise.
Positive Force is the go-to place for HIV-positive guys who live, work, or play in San Francisco who are looking for a community of HIV-positive men and non-positive allies. Get more info on how to get involved, and the next The Dr. Is In event by emailing firstname.lastname@example.org.