THE FINAL THREATS
THE FIRST SURVEY OF
By the year 2001, our
organization was operating a small program of paying the reimbursement
of travel tickets for patients from out of town who needed to come into
Oaxaca each month for their appointment with the doctors at COESIDA and
receive their medicines. It was well known that the new medicines,
especially the so-called “cocktail of three,” which was very expensive,
must not be interrupted or taken irregularly by the patient because the
body will build an immunity to the medicine and it won’t work. Then the
doctor must prescribe a new combination of the “cocktail” for it to be
effective. In poor areas of already scarce resources, of which there
are many in Oaxaca, this can mean patients going without their medicines
and getting sicker and dying.
The project had begun in
our old offices on Alcalá with a few patients, first “Chole”, and then a
couple others. But soon word was out and more patients heard about this
“free money” for their bus tickets, and then COESIDA began sending their
patients to us, and soon the project grew to reimbursing the tickets of
about thirty-five patients. We felt good about the program but it was
costing us a lot, at one point around six hundred dollars per month.
That was as much as our rent!
Well, we managed to find
the money somehow and also got to know the patients, who were all really
nice and, of course, very grateful always. And we started talking with
them and asking them how they were doing and how was their treatment at
COESIDA. We soon began to realize that the patients were getting
different medicines, some good, some not so good, including some were
receiving none, told to come back next month.
Worse, we found many of the
patients with no idea what their medicines were for. Some, receiving
AIDS medicine, that is the antiretroviral “cocktail,” and understood
what they had, but many, receiving pills for diarrhea or simple vitamins,
thought they were receiving AIDS medicine. Some patients even spoke of
the “cure” they had received and show us their pills. We didn’t have
the heart to tell them otherwise.
We made a few phone calls
to friends or acquaintances at COESIDA and been told, “Well, there
aren’t enough for everyone, you know,” or “We’re doing the best we can,
We decided to look at the
patients’ treatment a little closer.
BELOW: The COESIDA clinic, here adorned with
government political slogans.
We began an informal survey
of the patients we had coming to us, as I say around thirty-five, with a
simple form we made, what medicines they had received, how they rated
their attention, what was the name of their doctor, and such. The
patients were more than happy to answer our questions and even show us
the bottles of medicines they had received. We calculated the results
immediately: around 30 per cent were receiving a full “cocktail of three,”
9 per cent were receiving the cocktail “irregularly,” that is not every
month, 24 per cent receiving only one or two medicines and fully 36 per
cent were receiving no AIDS medicine at all.
We talked a lot about what
to do with this information. It was especially hard to see patients who
thought they were getting a “cure,” and who were getting nothing of the
sort. We approached COESIDA with our findings but they wanted nothing
to do with it, denying our figures and always saying publicly that
“fully 100% of COESIDA patients” are receiving their appropriate
medicines. It made us angry to hear this or read about it in the papers,
but we felt powerless to do anything about it.
Then we thought of our
“network” of AIDS organizations in the state of Oaxaca, four or five,
with whom we had a good relationship. We felt that with their voices
joining ours we would have a stronger case. We called them and
suggested a meeting to discuss this, giving them a good idea of the
reason for the meeting and what we expected. A simple work session was
called for mid-April in Juchitán.
During that time, USAID in
the American Embassy of Mexico City, had begun something called the
“Policy Project,” which was to combine efforts of non-governmental
groups like ourselves with governmental agencies like COESIDA and the
Secretary of Health, supposedly to set policy about AIDS work throughout
Mexico. Oaxaca had been chosen (again!) as one of the pilot states.
The year before, we had bowed out
of a ridiculously unproductive project put on by mostly the same people, called Building External
Relations, as being a waste of our
time, though we spoke diplomatically to them all when it happened.
Because of that, I guess, it was deemed inappropriate to involve the Frente in
this new (and quite similar) project and they
decided, we heard, to involve all the other AIDS groups in the state,
along with COESIDA, in this new project. And there would be money for
We thought, Fine, let them
do it. We were so tired of their meetings and more meetings
and workshops and seminars
and workshops about seminars going on and on and accomplishing nothing. We thought little more about
At any rate we were heading
to Juchitán to confer with them all about a different subject completely.
Ayax, Sergio, and I took the bus south.
We began by stating our
case and presenting the data of our informal survey, showing that many
patients were not receiving their medicines and suggesting that
together we could raise our united voice and possibly pressure COESIDA
to buy more medicines to fully cover the needs of the
I began to notice some
reluctance on the part of the others to second our opinions, especially
Lily from Gunaxhii, and Amarantha, two of the strongest voices, and it
happens, the most political. Lily was the wife of the regional federal
representative and Amarantha the holder of a MacArthur Fellowship (which
we had helped her to receive!). Both their groups were receiving
money from the "Policy Project."
The meeting dragged on;
they wanted to have more information before a statement could be agreed
on, and the meeting stretched into two days.
I had always said, and we
had all agreed, that as a group of autonomous groups, decisions must be
made by consensus, that is unanimous, not by majority. What ever group,
who disagreed with a vote, had every right to walk out. So we talked on
At one point the Policy
Project was mentioned and how important it was not to disrupt its good
work and intentions. I decided to speak up. I asked them quite frankly if they thought it was
impossible to criticize COESIDA, because of the Policy Project.
down at the
floor and hemmed and hawed.
“Yes,” finally said Lily,
“it’s just impossible at this time, Bill.”
I sat stunned and looked
over at Sergio and Ayax, who were shaking their heads. There was
nothing more we could say.
We left Juchitán and returned to Oaxaca.
Back in our office, we
rethought our strategy. First was the obvious: we had our data, our
facts; many patients were NOT receiving the medicine they should.
Further, we really didn’t need the other groups in the state to make
this information public, we certainly had sufficient support from the
local press to go ahead and tell our story.
And so, we sent the guys
around with the camera and took some photos of the COESIDA offices and
their clinic, and sent out the first of our press releases, stating
clearly that not all the patients of COESIDA were receiving the
attention they should. We wrote a great letter to the editor of La
Jornada in Mexico City, easily the most prestigious in the country. We
faxed it off and it appeared the following day. Suddenly there was lots
of talk. The local papers were calling for interviews and articles were
appearing. We sat back and awaited the results.
* * *
THE SECOND SURVEY OF
We soon received a visit
from our friend, Dr. Miguel Angelo Ramírez Almanza (BELOW). He had been
one of the founders of the Frente and our first president of the board.
He had always been a strong supporter, and during the years had risen to
a fairly high position in the Secretary of Health. He could not believe,
he said, the situation with the medicines and that something should be
done to follow up. He offered to talk to his boss, the Secretary, and
others who should know about this and see what action should be taken.
He asked for copies of all our data and promised to talk with us again
in a few days. His intervention would prove to be decisive.
He came over to our office again a few
days later and said that he had spoken to the Secretay of Health, Dr.
Aragon Kuri (BELOW), who said that he was interested in seeing this
problem addressed. Dr. Ramírez was to arrange a meeting with him and
with us and with COESIDA.
A few days later still, he
called to say that COESIDA had agreed and was planning to have a
breakfast meeting to discuss this matter, in, it so happened, one of the
most expensive restaurants in town. They had the day and the time all
set and had made reservations at the restaurant.
Well we thought about it
for a couple hours and reported back, No thank you! We would prefer a
simple meeting of twenty minutes, to lay out our case and hear what they
had to say. If they had extra money for pay big, fancy breakfasts, they
should spend it on buying medicine for patients who need it, we said.
I reported some of this to
Mary Jane Mendoza at the gallery, always a great supporter. “Good for
you, Bill!” she said, “There’s too many breakfasts in Mexico. Too, many
times they think everything can be glossed over with a fancy breakfast
or a big dinner, and all their problems will go away!”
So a simple meeting was
planned. Dr. Kuri couldn’t make it (Gee, what a surprise!) but there
would be Dr. Ramírez, the Doctora Gabriela and perhaps someone else from
COESIDA, and Ayax and myself from the Frente, and that would be all. It
would be held in the headquarters of the Secretary of Health.
I was a little nervous, of
course, but I didn’t look as bad as the Doctora Gabriela, already seated
when we arrived, alongside Dr. Sandra Pérez, one of her assistants.
Dr. Ramírez opened with a
few comments and turned to me and Ayax. We brought out our graphics of
the sample survey of 33 patients, and noted that only 39 percent were
receiving a cocktail of three.
They became very defensive.
No, we were wrong, they said. We didn’t know what medicines we were
talking about, the patients were not answering us truthfully, and
finally that our small survey was not representative of their patients
as a whole.
We looked at each other and
replied, “Well, then the only way to know is to survey all the patients
and learn the truth.”
“Yes, that would be best,”
said Dr. Ramírez.
We were prepared. I
brought out a sample questionnaire, asking for no name, but a complete
list of the medicines received by the patient.
“Fine,” said Dr. Gaby,
grabbing the questionnaire from my hands, “we’ll ask them.”
“No,” I said, looking at
Dr. Ramírez for reassurance, “WE should ask the patients; the Frente
Común should conduct the survey.”
“Yes, of course,” said Dr.
Ramírez, “that would be more appropriate. Can you do that, Bill?”
And so it was arranged that
the Frente Común would conduct a complete survey of all the patients of
COESIDA; that we would be standing in the entrance to the clinic and
that they would present each patient to us after each appointment. We
would be there from 8:00 in the morning until 4:00 in the afternoon,
everyday for one month, starting on the first of March, a few days away.
They glowered at us and
silently walked out of the meeting.
“Well, Bill,” said Dr.
Ramírez, “is that what you wanted?”
“I guess so, Doctor,” I
* * *
It was a lot of work. We
made two teams: Ayax and Edgar in the first shift, 8 to 12 noon, then
Alfredo and Pepe until 4. We had spoken to Claudio and Marta, our good
friends who happened to be located right next door to the clinic, and
they readily offered their nice, little patio for the interviews. There
were meetings, and meetings of evaluation and meetings of reevaluation,
and then we were in the entrance to COESIDA early on the morning of
It was all going fine and Dr. Ramírez
stopped by often to see how we were doing.
Then about half way through the month,
the head of the clinic, Doctor Vargas, suddenly stormed out of his
office and said, “OK, that’s enough. You’ve interviewed enough patients.
Now get out!”
The guys rushed back to the office.
Dr. Ramírez was appalled. He intervened and we were back interviewing
patients the next day.
In all, 145 patients were
interviewed. Many expressed their deep thanks that we were doing this
and wished us well. Marta and Claudio were welcoming and enthusiastic.
Dr. Ramírez congratulated us profusely.
And we were able to show
that still only around 41 percent of the patients were receiving a full
cocktail of three, very close to our original survey. On the first day
of April, we sent four pages of graphs and numbers (BELOW) to all
involved and Dr. Ramírez planned a follow-up meeting.
That meeting, with much
the same people as before, took place in the COESIDA offices. This time
Doctora Gabriela was in charge. She slowly announced: they had done
their own survey, she said, and she handed us a set of graphics. It
showed very different results: fully 100 percent were receiving all
their medicines and fully 100 percent were “very satisfied” with their
I looked at Dr. Ramírez.
He started to speak.
“But, that’s beside the
point,” interupted Dr. Gabriela, “we have just received more medicines,
from the federal agency, enough for 50 more patients. Now there are
sufficient medicines for all the patients who need them.” She stood and
walked over to a large number of boxes, indicating, “Here they are.”
She scowled at us.
Nancy later said, Bill, you
should have asked to look in the boxes; they could have been refried
So, without acknowledging
our survey or its results, the authorities of COESIDA had indeed come up
with additional medicines for almost all the patients who needed them.
It was made clear to us that we would not say another word, and we
didn’t. But it made us feel pretty good, and I imagine the patients
pretty good, too, to have resulted in more and better treatment for our
* * *
So we let it slide for a
while. From time to time we asked for further information from COESIDA
about their patients and the medicines but could get no response. We
asked for the lastest statistics from the Secretary of Health and also
refused. Finally we sent someone anonymously to get what should be
available to all the public.
A REQUEST FOR
That June I was having a
number of meetings with Dr. Ramírez, in Condón-Manía, as well as in his
office in the Secretary of Health. We were talking about making a
request to COESIDA about their current patient load and the medicines
they were giving out. Then one evening he showed up at the office,
unannounced, and looking distraught. Alberto from Prudence condoms was
there writing out his "factura" for the condoms we've bought, and taking
a long time, and I was chatting away but could tell the Doctor was
looking anxious. Well, pretty soon Alberto wraps it up and says goodbye
and I turned to the Doctor.
"What's wrong, Doctor?" I
"A problem," he said.
Seems someone (?) in the offices of the Secretary of Health had seen me
going in and out of his office there and mentioned (reported?) it to
Dr. Gabriela in COESIDA (!).
"What!!!" I said.
And then Dr. Gabriela
called the Secretary Dr. Felipe Gama (now in that position filling out
the term of Aragón Kuri, who's off to run for Federal Deputy, got it?),
and, I quess, said she was “muy molestada” and something like she didn't
want Bill Wolf visiting the offices of the Secretary of Health, or such.
Well, Dr. Gama calls up Dr. Ramírez and calls him in to talk to him and
says, what's this about Bill Wolf visiting your office?
Well, Ramírez said he tried
to smooth it over and explain who I was and that the Frente Común was
working hard and so on.
I felt like laughing out
loud, but, of course, I also wanted to calm down Ramírez and so I said,
well, he had done right in trying to explain to Dr. Gama and why didn’t
he suggest that Bill Wolf would like to meet with Dr. Gama and have a
nice conversation and all, and that he should let me know when it could
So he went off and I called
around and talked to Nancy and then to Sergio and all, and we had a
meeting and talked about it. Pina Hamilton said, “Oh, Felipe Gama, he’s
nice!” And Ayax said, “Oh, he operated on my brother when we were
Then Ramírez stops by again
and says that Dr. Felipe Gama can meet with us next Wednesday, the 7 of
July. So Sergio and Dr. Ramírez and I went into his office and had a
nice talk and I had the impression that Felipe Gama (BELOW)
didn’t know what was going on and just asked a few questions and
then we left.
The very next day, Sergio
and I went to COESIDA, with our nice letter for Dr. Gabriela, asking
for information we wanted but we were told she was out of town for a
month. Well, we met with a Doctora Pilar, gave her the letter and she so
set another meeting for next Tuesday. I was getting tired of the
I told Dr. Ramírez about
the upcoming meeting and said we would like it if he could come with us.
He said, “Why, Bill?”
“Well, because you have a
lot of weight with them, they’ll have to take us seriously,” I replied.
He immediately lifted the
phone, and called COESIDA. He explained who he was and said he expected
a full response to the Frente’s request for information and that he
would be accompanying us next Tuesday. He hung up.
“Mickey!” I said, and
hugged him. He smiled.
So the following Tuesday we
all went, at 1:00 pm., Dr. Ramírez, Segio and I. We were shown into
Dr. Pilar’s office by a secretary and given coffee and cookies and soon
Dr. Pilar and Dr. Sandra Pérez, joined us. Yes, they said, they had
the information we wanted and they handed us two pieces of paper. One
was in the form of a letter, answering our letter, with the four points
listed and a response to each one. The second page was a print-out from
a computer of medicines and combinations of medicines, about 30 in all.
Nothing about how many patients were receiving them.
We asked if they also had
the latest statistics of AIDS cases reported, which are regularly
printed out by the Secretary of Health. They said, yes and went and got
them. They were a little briefer than usual, only six pages.
Well, we thanked them
politely and got up to leave. Smiles all around. We walked down to the
street and Sergio said, “It could all be lies, of course.”
We thanked Dr. Ramírez
profusely, of course, and said we were going off to look over the
I also asked him when he thought Dr.
Felipe Gama was going to come visit our office. He said he would find
out and went off to his work.
A couple days later we had
heard nothing and so decided to send a more formal letter, inviting the
Secretary of Health, Dr. Felipe Gama, at Dr. Ramírez’ suggestion, to
come by our condom store, on Thursday at 7:00 pm. Then I called Lilia
and Pina and Sergio and a bunch of people and the press and such, and
said to stand by as we were waiting to hear from Dr. Gama, when he could
come and a confirmation from his office that it was on. So, waiting, as
I said, a couple days more, I called Dr. Ramírez and said what’s up with
“Bill,” he said, “the
Doctor doesn’t want to do it. He said he’ll stop by one of these days,
but not with right now.”
“What? How come?”
“Well, Bill, I think he
doesn’t want any problems with Doctora Gaby. Sorry.”
So that was it; though
Gaby’s out of town, still her influence is felt, and Doctor Gama
couldn’t face a problem with her. Oh, well.
* * *
So, as I say, we had gotten
two pages of information from COESIDA, I guess several of them put it
together, Gaby was out of town, or so they said, and we were looking at
the two pages and the new set of statistics from the Programa de
Archives. And trying to figure out what they said, really.
First we noticed that they
really had not answered one of our main questions, number three, to be
exact. We had asked how many patients were receiving the combinations
of the medicines, the so-called “cocktail of three.” They had answered
our question number two, delineating some 30 different combinations of
But I guess we should have asked who
many patients were receiving “each” combination of medicines, not just
the overall total, which they reported was 272 patients.
So we wrote out a short
supplement to our original request, Dr. Ramírez Almanza again helping us,
and asked them to clarify their response to question number three,
mainly, how many patients for “each” of the different combinations. And
sent it off.
Well, two days later comes
a letter, now signed by Dr. Gaby (!), saying would we please explain
why we wanted to know this information, please.
We had it framed!
Well, we didn’t have it
framed, but that would be all we would get from them and they let us
know it. So we began to look again at the data and prepare, what was
the purpose all along, an open letter, to be sent to the press,
something like “how to interpret the official reports,” and we started
“A NECESSARY ANALYSIS”
We began looking at the
information that we had gotten from COESIDA with the idea of an article
or open letter, something like “How to Interpret the official statistics.”
Ayax and I and Sergio coming over to give a hand and about once a week I
would take our writings in to Dr. Ramírez and he would read them over
and make suggestions and such.
We were feeling pretty good
about it and I had done some graphics, charts, illustrating our points
and we sent it out to the newspapers. I personally went around and
talked it up, saying we wanted a full page if possible. Well, the
following day, only two of the papers had printed anything and then only
a small “summary” of our article. I was disappointed, natch.
So, we said, hell, let’s
print it ourselves the way it should be. I went over to talk with
Claudio and Martha, our printers, and they liked it a lot and were very
encouraging but said, Bill, we’d have to print a thousand or so to be
worth setting up the presses. They’re all offset. Do a hundred copies
by xerox, they said. Much easier.
I saw their point and went
off. Then I thought of the nice guy I know at “Docu-Print” and stopped
by to talk with him. I asked him to donate the copies, little
brown covers on a small booklet of about 20 pages. He said sure.
So, we got a hundred copies and they looked real nice (BELOW).
It was called “A Necessary
Analysis,” and opened with a short introduction by Sergio, in which he
said, among other things:
“… In the
following analysis, using graphics by the Frente Común, we ask you to
reflect, with us, on the data and numbers provided by the Secretary of
Health and by the State Council on AIDS (COESIDA), government
institutions whose responsibility it is to oversee the spread of this
disease and to take measures toward its control. We at the Frente Común
are trying to provide a greater clarity to this information, which is
the right of all citizens to know with complete transparency the
situation of HIV/AIDS in Oaxaca.
We reject the
government’s whitewash of this information, and insist that our
population be informed of the magnitude of this problem.”
The rest of it
was signed with my name.
the office of the State Counsel on AIDS (COESIDA), there are 369 persons
classified at patients who are receiving attention in their AIDS
Clinic. This number represents an increase of more than double in the
last two years alone. We at the Frente Común Contra el SIDA consider
that the staff of COESIDA deserves recognition for their work and for
making this clinic one of the finest in Mexico.
get a more complete overview of the situation, it is necessary to read
between the lines of the official statements and figures put out by the
government health agencies, now reporting over two thousand cases of
AIDS in Oaxaca.
“ … It is also
very likely that the number of AIDS cases reported by the Oaxaca
Secretary of Health is far below the reality of such cases. How far
below? It is impossible to know.
An example of
under-reporting can be seen in the area of the Isthmus of Oaxaca, where
the state health system reports 527 AIDS cases reported, while the NGO,
“Gunaxhii Guendanabani, in the city of Juchitán, has counted fully 630
cases in their community.
In the Frente
Común, we believe that currently those areas most rural, most
marginalized and most wanting in health services, are exactly the areas
with the fastest growth in AIDS cases not reported. They are precisely
the areas with the least cases reported by the Secretary of Health:
Tuxtepec (12%, the Mixteca (7%) and the Sierra (4%).
As of June 30,
2004, the official statistics report 2,298 cases of AIDS; these are
“accumulated cases” since 1986 in the state. Recently the office of
COESIDA reported that 1,338 of those have died and that 951 of those are
living, as of July 12, 2004.
the office of COESIDA reports 369 persons which are classified as
patients, that is, receiving attention in their AIDS clinic. At the
Frente Común, we ask: And the other 582 persons (of the total 951 cases
“living”)? Where are they, and what attention are they receiving?
We know that
some cases are being seen in the Social Security Institute (IMSS) and
some others in the Workers Security Institute (ISSSTE), however the type
and quality of attention available in these two institutions is not
known and not reported by the Secretary of Health.
It is also
possible that some persons are receiving attention through the health
system of PEMEX (the national petroleum company) and some others through
the health system of the military. We ask: How many of the reported 528
cases are receiving inadequate attention? How many are receiving none?
impossible to say. We can only intuit that there is a large number of
AIDS cases in Oaxaca who are not receiving the attention they need
we note that the office of COESIDA reported that 272 of their 369
“patients” are receiving medicines against AIDS, the called
“antiretroviral” drugs. These drugs are given in combinations (usually
of three) the well-known “cocktail of three” and should not be
interrupted in their application. The office of COESIDA has given us
information about the various combinations of drugs which they use, but
not about how many patients are receiving a full compliment of three,
explaining that variations in the application of these drugs is
providence of the doctors to “judge the progress of the disease in each
worthwhile to recall that two years ago the Frente Común was permitted
by the Secretary of Health to survey the full number of cases of AIDS
patients in COESIDA, finding that only 41 percent were receiving a
correct combination of antiretroviral drugs while COESIDA was insisting
fully 100 percent of its patients.
ask: and the 97 patients who are not receiving any antiretroviral drugs?
The office of
COESIDA informs us that their situation can be that some of the persons
classified as patients “do not require” these medicines, and that it is
a decision of their doctors.
the factor may be financial. There are two tests which are part of a
required protocol; they are, first, the “viral load,” which measures the
actual number of virus in the body, and, second, a test called “CD4,"
which counts the number of limphocides in the body. These two tests
must be done in Mexico City and are very expensive: $1,650 and $720
pesos, respectively. Together some $2,370 pesos. The frequency of
these tests is also a decision of the doctor but can be every six
months, and can be required of the patients for receiving their
We at the
Frente Común believe it is important to know how many AIDS patients of
COESIDA are not receiving their medicines for lack of money, for waiting
for test results, or for “not required.” With the information we have
been given, it is impossible to know.
Viewing these many pages
of reports and statistics, provided by the Secretary of Health of Oaxaca
and by the office of COESIDA, our initial observations are clear: there
is much AIDS in Oaxaca (much more than the 2,298 “reported” cases), and
there are many persons with HIV/AIDS in Oaxaca who are not receiving the
attention they deserve (many more than the 582 “unknown” cases), and at
least 97 “patients” of COESIDA are not receiving the antiretroviral
drugs they should."
* * *
We sent out a hundred
copies to government and community leaders in the state and got quite a
bit of talk for a while. I even heard someone saw a xerox copy of it
Perfect, I thought.
* * *
PART THREE: GOING TOO FAR