My health policy intern, a nurse who volunteers at a needle exchange in the East Bay, asked me what I found rewarding about my work as the hepatitis prevention coordinator for the state health department. My answer—that I enjoy making line edits to state and federal policies so I can make the health system better for people who inject drugs—seemed far-fetched, even to me.
So when Erick asked me if I wanted to read something for this show (The Bay Area Streetopia Book Release party at the Luggage Store Gallery in San Francisco), I found myself wondering:
What does it mean to be an anarchist working for the government? Or as Erick asked me when he first heard I’d taken the job eight years ago, “What can you possible get done working for the state?”
I lived on the streets as a teenager here in San Francisco and then became an outreach worker with homeless youth in the Haight when I was 20 year old. Half the kids we served had hepatitis C and most had seen someone OD. Over the next four years, we lost three dozen clients and peers to overdose and it broke my heart every day. I also saw the discrimination the kids experienced, like when a doctor said in front of me “No junkie will ever spend a night in my hospital.” I felt like we needed to stop people from dying and being treated so terribly by health care providers, so I started going to meetings telling the City what to do.
I went to school to better understand the root causes of homelessness. There, I learned the classic story that’s used to describe public health. It goes like this.
A man is walking along a canal when he sees someone floating by, drowning. He jumps in to pull the person out and thinks “Phew. That person could have drowned!” But soon he sees another person floating down the canal and pulls that person out, then another one, and another one. Someone stops and helps him pull people out of the river. Instead of staying to help, he runs away. The second person yells, “Hey, where are you going? Aren’t you going to help me pull them out?” “No,” he says. “I’m going up the river to see who’s pushing them in.”
Twenty years later here I am, working for the state department of public health. So, what’s it like? Well, I will tell you. But first I have to make clear: I am speaking of my own experience and not on behalf of the state. Having to say that at all is one of the weirdest parts of what I do.
WHAT IT’S LIKE
You have enough money to pay your rent, and your Mom’s rent, but not enough to buy a house. (Join the club!)
You have more freedom and autonomy than you had thought possible, as long as you know where to draw the line. (You can say and do what you want, just so long as you don’t take positions on budgets or legislation, or speak to the press without getting all of your talking points cleared in advance.)
You work with people who are in fact incredibly committed to and passionate about their work.
You find yourself celebrating minuscule victories, like a document finally getting approved after six months of review, and some big ones, like Medi-Cal changing their hepatitis C treatment eligibility policy to explicitly include active injection drug users when they had been excluded before. It took months of phone calls and fact sheets and lit reviews and meetings and conference calls, but you helped get it changed.
You find yourself with the questionable distinction of explaining to your former colleagues how to work effectively with the government. (Ask for what you want!)
You stay neutral where before you would have taken a stand, because your credibility and effectiveness rest on being seen as an objective, trusted resource to people who set state policy.
You weirdly miss the horrible Bush years, when you and your friends opened up squats and fed people and rode in circles for hours to block traffic in the lead up to the Iraq War.
You work such long hours that you don’t go out as much, instead seeking refuge at home with your plants and your cat and with your weekly queer meditation group.
You find your clothes are suddenly all business casual—when the weekend comes and you see your friends, you find yourself overdressed for shows yet still wearing things too grubby and stained for work.
Instead of writing a zine for this show you imagine making PowerPoint slides and then catch yourself.
You sit down to take stock of your life and what you have accomplished and vacillate between feeling proud of what you have done and feeling that it is all very small.
And then you remember that the chair you are sitting in was made by people who are incarcerated in California state prisons, and you literally sit with your hypocrisy, hoping at minimum you are not causing harm. If it were up to you, drugs would be legalized and prisons would be obsolete. But advocating for those policies from outside the system is not the role you have chosen for yourself right now. You do what you can to improve the lives of people who are incarcerated or returning to the community from prisons and jails, like raising a technical policy point during a Medi-Cal meeting on eligibility for a proposed housing and health program. They are deemed eligible where they would have been excluded had you not spoken up.
Working for the state is not all bureaucrats and obfuscation, although you certainly deal with that a lot. In many ways, it is similar to working with homeless youth in that your job is to celebrate any positive change, no matter how incremental. Only in this case, the change is not with the individual taking steps to reduce drug-related harms but with the system reducing their harms to drug users and other people who have been historically excluded from health care.
THE ROLE OF INCREMENTALISM / INCREMENTAL CHANGE
Looking back at 25 years of needle exchange, the researcher Don DesJarlais concluded that what we’d created, very much out of necessity, was a separate and unequal health system for injection drug users because they couldn’t get non-discriminatory care from mainstream providers. Now, under Obamacare, low-income drug users are eligible for coverage (except for undocumented adults), and health plans have to cover them for the first time. We suddenly have the chance to make health plans and providers respond to the health needs of drug users, only they don’t know how because they have never had to learn. My role is to tell health leaders why they need to be nice to drug users and, once they’re listening, how.
I am trying to get oppressed people the right to participate in the status quo, which is terrible, while trying to improve the status quo at the same time. Is this revolutionary? No. It is pragmatism, which is nothing new. What interests me as I get older is our attitude towards pragmatism. Does it feel consistent with our beliefs? Does it feel like defeat? And if we were not solely responsible for a positive change but contributed to it in some way, is that enough? You be the judge. For instance…
THINGS I’VE GOTTEN DONE
U.S. Preventive Services Task Force (USPSTF)
One small example of my work involved sending a letter with California-specific data on the hepatitis C disease burden to a national body called the United States Preventive Services Task Force, providing evidence to inform their decisions around whether to endorse hepatitis C screening for at-risk groups. As a result of feedback from the State of California and many others, the task force endorsed hepatitis C screening, making it free under the ACA for insured people to get tested with no out of pocket costs.
Assembly Bill 1382 (Torres, Chapter 643, Statutes of 2011)
Another example is the work I did helping to make it possible for HIV test counselors in community-based programs to use the first-ever hepatitis C rapid test. It took 2-3 years of research and memos and guidelines and fact sheets and legal wrangling and even having friends protest the policy but it worked. People at risk can now get tested for hepatitis C antibody and find out their results in 20 minutes, rather than getting their blood drawn and never returning for their results, which was the norm before the law changed. Only a few thousand people get hepatitis C rapid testing at community-based programs each year. But it means something to the people who get tested, treated and CURED, no longer carrying the stigma of hep C.
In my capacity on a state overdose prevention working group, I got to review an advanced copy of the Medical Board of California’s new pain management guidelines. In the draft guidelines, I made numerous line edits to emphasize the importance of making sure that anyone in California who gets a prescription for opiates for pain also gets a prescription for naloxone, the drug used by lay persons and paramedics to reverse an overdose, which is highly effective in saving lives. The Medical Board accepted my suggestions and they are now reflected in the pain management guidelines for all 100,000 licensed physicians and surgeons in the state.
Long live the line edit!?
POLICY WORK AS SELF-CARE / PROFESSIONAL DEVELOPMENT / BURNOUT REHAB
The truth is I choose to do policy work in part because I couldn’t handle direct service work anymore, because I felt like pulling any more people out of the river would drown me, too.
The piece I installed in the original Streetopia show had to do with balancing the tension between communitarianism and self-care. My piece involved a tub filled with water, paper and crayons, instructions to make a paper boat, and a banner asking people the question: “What keeps you afloat?,” “Make a boat, think about the question, use what’s here to answer it, and set sail.”
After the show I kept a list of the responses and have hanging above my desk some of my favorite ones.
“Knowing that there are others of my kind.”
“The desire of dignity for all peoples”
“The idea of a boat”
“Sweetness of life | tenderness”
In this way I am buoyed still by the affinity of other people who answered the question at the show.
For me, state-level policy work is a kind of delayed gratification, writ large. It is also a kind of self-care.
If, in a city like San Francisco with 850,000 people, it takes six months to get something done, it might take the State of California, with 38 million people, six years. Some things I started working on in 2008 are only coming to fruition now—like Project ECHO, where a liver doctor at the University of California San Francisco (UCSF) is going to train primary care clinicians in rural and medically underserved communities like Humboldt and Lake County and the Central Valley to treat their own patients for hepatitis C so people don’t have to drive 200 miles to see a specialist, something a lot of low-income people can’t afford or don’t feel well enough to do.
There’s this pyramid that Tom Frieden, the head of CDC made, illustrating the trade off involved in public health. It may be easy and satisfying to educate one person at a time about, say, their HIV risk or diabetes, but it only impacts one person at a time and so if you try to do the same thing for everyone, you’ll never reach them all.
In contrast, if you change the law so people have access to syringes or healthier foods, you could spend six years making a minor policy change but, once you’re done, in a state like California, it’s a big deal.
Pursuing this kind of long-term, slow-and-steady-wins-the-race strategy requires a great degree of faith in the integrity of the system being amenable to change by people like me.
Whether that faith is warranted is questionable at best. Change requires a lot of inside and outside pressure, which is why I try to stay in touch with people in the community who can say publicly what I cannot when the time comes, which is how we got $2.2M this year for hep C testing and linkage care programs, thanks to Project Inform!
When I went back through my notes and looked at all I have accomplished in my job, it was alarmingly humbling, and made me wonder if I wasn’t delusional after all. But then I look at the sum total of all the little things I’ve gotten done, or at least been a part of making happen, and it seems to me they add up.
Every few years, when I fear the funding for my position might be cut, I look at what I have accomplished and what I would like to stick around to see through. Maybe because it takes so long to get anything done, there are always a few things I’d still like to do. Maybe that’s the matrix-like illusion I live under—that my voice matters when in reality the system has digested me with a satisfied burp.
My hope is to put enough things in place so that if/when I do leave, the policies I worked on will still be effective and, because of the efforts of drug users, service providers, outreach workers, doctors, researchers, and bureaucrats like me, the rights and dignity of drug users will someday be taken as a given. And perhaps it is less about the outcome and more about the process of showing up and speaking truth and donning business casual and finding the perfect line edit to institutionalize the values I hold dear, while out here, in Streetopia, we all build the more perfect world in which we truly wish to live.