THE FINAL THREATS

*  *  *

PART TWO

THE FIRST SURVEY OF PATIENTS

             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, Bill.”

            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 the organizations.

            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 it.

            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 patients.

            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 and 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.

            They looked 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 PATIENTS

            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.

            Gaby gasped.

            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 replied.

*  *  *

            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 March first.

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 treatment.

            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 beans!

            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 people.

*  *  *

            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 INFORMATION

            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 asked.

            "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 be.

            Wow.

            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 little.”

            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 run-around.

            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 information.

        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 the Doctor?

            “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 medicines.

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 writing.

“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.

            “According to 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.

            However, to 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.

            “As mentioned, 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?

            It is 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 (BELOW).

            Additionally, 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 patient.”

            It is 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. 

            Further, we 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.

            In addition, 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 medicines.

            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 somewhere.

            Perfect, I thought.

*  *  *

PART THREE:  GOING TOO FAR