That St. Francis Memorial Hospital has an HIV newsletter is
not remarkable unless you factor in that St. Francis makes no
HIV news. There is no HIV department or clinic. The newsletter
is there because Diane Cenko is there to write it, print it,
fold it and mail it. Cenko, 62, lives in Oakland.
"When
the hospital decided
to eliminate the clinical research department completely, our
community advisory committee wanted the hospital to continue
to honor their commitment to serve the HIV-positive community.
My thought was to get all the clinical research sites to work
together. There are a lot of studies that need to be done to
make HIV progress happen. Without research nothing moves anywhere.
Hence we developed this newsletter
because our clients, particularly in the Tenderloin area and
South of Market, are not computer literate. There's always Clinicaltrials.
gov if you want to spend a week looking for what's happening
here, but not without a computer. So we said, 'OK, we're going
to do a printed letter. We're going to do it as comprehensively
as possible, and try to make it economical.' We're not a high-tech
glossy publication. I'm using prehistoric publishing software.
HIVCare News was a leftover
name from the clinical research department here. The newsletter
was just about the individual studies that happened here at St.
Francis - 'This is what we're doing here, folks, come and sign
up for our studies.' That's all it was. It was an ad.
The format changed from just
being about us to being about everybody. When I launched the
new format, in December of 2003, we had just 100 or 200 people
on the mailing list. Now the mailing list is about 1,500 printed
copies and about 250 e-mail copies. Subscribers include all the
doctors I know that treat people living with HIV, Project Inform
and every other AIDS service organization. It comes out every
other month. I used to do it every month and it drove me insane.
It is a free community benefit.
People call every day asking
to get on the mailing list. I always ask if they'd like to get
it by e-mail, and they always say 'no.' They don't have computers
and it's easier to have a copy in your hand. The mailings are
expensive. We send it first class. It comes in an envelope, so
it's private. It could be a bill. So no one's the wiser. It circulates
to people living with HIV in San Francisco, the East Bay, Marin,
Sonoma, Napa, Contra Costa. It goes to San Jose. Then I have
people all over who ask for it. Like in Las Vegas, Palm Springs,
just weird places.
I decided to learn about HIV
treatment 15 years ago because I had a dear friend who was being
badly treated, in my opinion. There was no Internet, so I went
to Project Inform to do that. I wanted to help make people aware
of treatment options, what it takes to survive. That snowballed
into writing. I never imagined doing this. I was a high school
counselor and English teacher for 20 years in Vallejo and Union
City.
My feedback is what keeps
me going. Most research now is in treatment of HIV, as opposed
to eradication. Of all the studies we've published in the last
four years, we've only had one study looking to eradicate the
virus. That one is happening right now and that's a good sign
that we can all pack up our shop and go home sometime soon. I'm
going to get another job. I think I'll be a dog walker or a private
investigator."
The Lightbulb: My position as outreach coordinator
was eliminated from the hospital. The HIV care department was
gone. I was gone. But there was still a need to connect people
with studies. So this was my little idea of how to do that.
'I'm going to write a newsletter. I'm going to try to be a
clearinghouse for clinical research studies.'