When austerity proponents like Grover Norquist push for more and more cuts, there are real-world effects on some of our nation’s most vulnerable populations. Following recent sequester cuts, 85 percent of AIDS organizations saw their budgets reduced even as 79 percent saw their clients increase, according to a fall survey from the AIDS Institute. Last month, Congress increased Ryan White HIV/AIDS Program funding to $70 million above sequestration levels — still $24 million below the Fiscal Year 2013 rate.
To consider how cuts – to AIDS programs, to food stamps and to unemployment — are impacting people with HIV, Salon called up Janet Weinberg, interim CEO of Gay Men’s Health Crisis, the three-decade-old prevention, care and advocacy group.
“We’re creating a cycle where people are set up to not succeed on medication,” said Weinberg. A condensed version of our conversation follows.
“Unfortunate” would be putting it mildly… The impact really hit very, very hard in social service agencies like GMHC…
We lost, as was described, 10 percent of our federal funds… You’re talking a million plus dollars. A million dollars buys an awful lot of service, and buys an awful lot of food, and buys an awful lot of security where people who are struggling with HIV won’t have it…
That [hit] every single one of our federal programs. So that meant [post-exposure prophylaxis] programs, that meant counseling programs, that meant programs for people who are HIV-positive, that meant working with youth between the ages of 14 and upward to 29…
On top of the sequester last year, because that was enough insult to injury, we also had something called Hold Harmless… a clause in the Ryan White [Act] to protect and make sure that cities like New York, which are the hardest hit with HIV, were protected, to ensure that they got what they needed out of Ryan White. And the [Health Resources and Services Administration] stated that they made a mathematical error and… $18 million of New York State Ryan White dollars had to be repaid. And what that meant was five months into a contract, we were told that contracts were being cut.
These clients who are HIV-positive don’t get food? Guess what: they can’t take their medication. We’re sabotaging ourselves with this kind of thing.
Ryan White also covered some legal services. These are clients that face eviction.
Putting somebody out on the street is helpful? Who’s HIV-positive?
…The kinds of services that GMHC is providing are critical life services that are fundamental… and that’s what was cut…
In 2012, the federal government appropriated $3.5 billion to HIV. With sequestration, $3.5 billion was cut to $3.2 billion… Pretty radical.
For people who are served by GMHC, how do those cuts interact with the cuts we’ve seen to food stamps and to unemployment benefits?
We are seeing clients who are hearing about these SNAP cuts and coming in, saying to us they do not know how they are possibly going to survive with less food than they have…
With the interaction of HIV meds, we really need to be watching nutrition, to make sure that these folks are getting the food they need to metabolize the medication. So these SNAP cuts may really truly affect these clients from being able to take meds. That’s pretty drastic. That’s very serious…
In terms of the unemployment pieces, we’re desperately trying to help people get back to work… [But] somebody with HIV can’t afford to have a job that doesn’t really give them security. Otherwise they really need to stay on benefits. So again, we’re defeating ourselves by not giving people enough of a safety net…
A person who has HIV has got to plan for how they are going to stay on their medication without any breaks whatsoever, which means you can’t have a gap in your healthcare coverage. You must have coverage for your medication. You can’t afford a risk of losing housing.
You really can’t couch-surf and stay healthy with HIV, because you’ve got to take medication, you need a routine, and part of that is having a steady roof over your head. With HIV, you need proper nutrition. So if you were to have a job, and the job is unstable, and suddenly you find yourself out of work and unable to find work… It’s not so easy to just jump back on Social Security Disability. First of all, if you’ve worked, you’re showing that you’re capable of working. And now you’re caught in real Catch-22…
We’re creating a cycle where people are set up to not succeed on medication.
If someone doesn’t have sufficient food, what happens to their medication?
There are certain meds that really have to be taken with food… It’s not just any food – it’s specific foods that you need…
These meds are very hard on the digestive system, and so it’s nutrition that allows metabolism of these meds. Without nutrition, you’re not triggering your whole metabolic system to digest and to ingest the meds properly so that you get the best effect from them.
Who do you blame for this new set of challenges?
Congress. I really, really blame the House…
At the [2010] International AIDS Conference, then-Secretary of State Hillary Clinton came and spoke, and for the first time used the language that we could have a next generation that was AIDS-free. So you can see, the framework is being put in place, but the funding is not…
In the country, only about 25 percent of all people who have HIV and AIDS are what’s called virally suppressed, which means that they’re getting their medication at an optimal level… So then you scratch your head and say: in the United States, why [are] 75 percent not able to obtain that goal? So GMHC has been wrestling with that.
We started a program with Mount Sinai hospital two years ago, where every single person who tests positive in our testing center is basically… triaged into an emergency room kind of situation…When asked if they would like us to make them an appointment immediately, and walk them over to a doctor today, we have had basically 100 percent compliance – people want to go to the doctor if they find out they’re HIV-positive. But they need help getting there… We start giving them wraparound services, finding out who they are, how they might have gotten infected, what we can do to work with them, and help them get healthy, get stable again.
In that program, over the last two years that we’ve been running it, we have a 90 percent suppression rate, compared to the country’s 25 percent suppression rate.
I think we can resolve this HIV issue… [The issue is] the political will.
Is there a tension between a focus on research into preventing HIV and a focus on treatment? Are those in competition?
Yup. And the pendulum swings back and forth…
The early years of HIV, the only thing we had was prevention. Then we got antiretroviral therapy, and all the focus went to treatment. And [now] prevention among people who are HIV-positive has become the talk of the town – it’s called test-and-treat. So as soon as you test, you get on medication.
What we are neglecting is that there are actually [more] tools for prevention now, besides condoms and besides latex, there’s now pre-exposure prophylaxis, which gets a fair amount of attention. But [for] all that attention, there’s only 1,600 people in the U.S. on pre-exposure prophylaxis. We can do better.
The other is that we have post-exposure prophylaxis, so in the event that somebody is subjected to HIV for whatever reason… you’ve got a 72-hour window to get on post-exposure prophylaxis and decrease their rate of actually getting HIV by about 96 percent…
We have tools that aren’t being used. We’re not doing good enough with preventing people from getting HIV… The medications are expensive. I could keep them negative for a whole lot less money.
The relationship, in politics and in media and culture in the U.S., between HIV and the LGBT movement — has that shifted, and to what extent has that been good or bad in terms of efforts to address HIV?
The community seems to put all their eggs in one basket. So in the ’80s it was all about HIV and nothing else. And now, in the second decade of the 21st century, we seem to put all of our eggs into the marriage basket. And nothing wrong with that — we consider that to be an HIV intervention. But HIV really is not on even… the Top Five agenda for LGBT folks.
Yet when we look at the numbers… The top numbers for new infection, and the only area that new infection is occurring more rapidly than anywhere else, is young black or people of color MSM [men who have sex with men]… LGBT should be incorporating it…
The only other thing I would press on this is… if you look at how much money is going into HIV today, with inflation, it equals the same amount of money as 1991. And yet we have so many more tools, and so much more we can do with HIV. This is not the time to be not addressing inflation, and not addressing cost of living with an HIV budget.
GMHC and other organizations are truly ready to end the AIDS epidemic. We can get below epidemic levels. We have the tools, we have the knowledge, we have the skills. We don’t have the money.
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