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”
“Love”
“The idea of a boat”
“Tacos”
“Spooning”
“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.
