I was a little annoyed with Kiyoshi Kuromiya. For days, I’d left
messages on his voice mail, e-mail and pager – no response. I tried
calling one last time. He answered in a smooth, leisurely voice that
belied his hectic schedule: "Sorry I didn’t call back, I’ve been at a
conference for a week. But let’s talk now, because I’m going to Toronto
tomorrow for another conference. I haven’t checked my e-mail yet. I have
about 2,000 messages to read before I leave. "My irritation dissolved.
As the founder and only full-time employee of Philadelphia’s Critical
Path AIDS Project, Kuromiya staffs a 24-hour treatment hotline, runs a
massive and website, publishes a quarterly newsletter and provides free
Internet access and e-mail to more than 1,000 people. Kuromiya has
consistently made himself, his life and his advice accessible to PWAs
since 1989. This has included coauthoring, with the late Jonathan Lax,
ACT UP/Philadelphia’s HIV Adult Standard of Care, a widely respected
guide now in its 12th revision. The former POZ cover boy (February/March 1996) breaks down his history of treatment decisions.
How have you – one of the most AIDS-informed people imaginable – made decisions about what works best for you?
I have a pretty good idea of how my body works. I know how to read
the scientific literature and make my own decisions. And I’ve been a
risk-taker. It’s done well for me.
I’m also a survivor of cancer – I had metastatic lung cancer in 1977
and an upper lobectomy, which is essentially removing part of your lung.
I believe I was infected around 1979 to 1981. I wasn’t tested until
1988. At the time, my CD4 count was 256. By 1992, it had dropped to 32.
In 1994, I decided to begin low-dose [300 mg] AZT along with ddI. At the
time, ddI was really hard to take. It was like chewing two sticks of
chalk every morning. I used to stay in bed an extra 20 minutes just to
avoid it. My CD4 count was around 100 soon after starting.
In mid-1995 I added Crixivan [indinavir] and 3TC to the AZT, while
dropping the ddI. This was prior to Crixivan’s release, but a couple of
my friends were in trials and had extra pills. I was doing 1,800 mg [the
earliest trial dosage] with food, three times a day. Now we know not to
use it with food. So I was what we’d now call "noncompliant" for my
first nine months on Crixivan, until we got it approved with the correct
food advice. But as of this March my viral load was down from being off
the charts to 3,500.
What about complementary therapies?
My only complementary therapy is marijuana. I’ve tried Marinol [the
pill version], but if you have appetite loss, you want to deal with it
immediately. Marinol doesn’t kick in immediately, and honestly, it’s not
as effective as pot. I’d smoked pot before, and I enjoy it. It’s
essential in preventing weight loss. When I was in Yokohama in 1994 for
the International Conference on AIDS, I couldn’t get any pot because of
Japan’s strict laws. Without access to marijuana, I lost 18 pounds in 18
days. I also operate the only cannabis buyers club that distributes
marijuana for free. We distribute half an ounce every two weeks to 30
Have you ever experienced any side effects from your current meds?
Since taking Crixivan, I’ve had three kidney-stone attacks. This
despite drinking the recommended amount of water to avoid kidney stones –
although in my own way: I think I’m the only adult in the world who
drinks tow quarters of Kool-Aid a day. I never had surgery – I passed
the stones and dealt with the intense pain myself. I tried
self-medicating with morphine, but I found that only regular Advil
But I’m feeling great; I’ve felt good all along. I’ve worked 20 hours
a day all through this. Something that my mentor, Buckminster Fuller
[the late, visionary philosopher/engineer/ecologist], said is that using
technology, you can do more with less. We have a complete grass-roots
organization with only one full-time employee and one part-time systems
administrator. The community has to do what the federal government
should be doing in terms of public health. At Critical Path we scan
information that has been translated into many Asian languages and put
it on our website. The CDC has not published information in any Asian
language since the surgeon general’s brief prevention pamphlet in 1987,
and they’ve never done so for treatment information. We have to pick up
where they leave off.