On the 19th of March of 2010 I was contacted by Mathew Kavanaugh an activist based in the U.S. The contact was in reference to David, a 23 year old Guatemala PLWA who has HIV/AIDS and was having trouble obtaining treatment at the Roosevelt Hospital in Guatemala City. David had decided not to take Kaletra 8 months previously when it was offered to him as a substitute treatment for a previous cocktail to which he was apparently developing resistance. David lacked the information necessary to realize that this was a dangerous decision. He felt that because of his extensive work related travel to hot climates that he would be unable to maintain the Kaletra refrigerated, and therefore it would be useless. Due to his refusal it was noted in his file that he was a "non-compliant" patient.

When he returned to the hospital, 8 months later he was having symptoms such as loss of weight and night sweats. However, the hospital refused to treat him because he had been designated as non compliant. At this point I intervened. David declared his willingness to take whatever treatment was assigned to him. (by this time the version of Kaletra that did not require refrigeration had become available).

After receiving the contact from Mr. Kavanaugh, I contacted a supervising physician, Dr. M, who agreed that the hospital would re-open David's file, and allow him to be treated. However, in his first few visits nothing was done except some diagnostic evaluations which revealed, among other things that his CD4 count was a dangerously low (four). A few days later, Dr. M clarified for me that David could not start on a Kaletra based cocktail because it would have to include Abacavir and there was a stock-out in Guatelmala of Abacavir at that time. It was unavailable for David, as well as several hundred other patients who needed it.

In the mean time he would receive prophylactic medication for prevention of Opportunistic Infections. Time passed, too much time. David began to deteriorate and weeks later, there was still no abacavir in the Public Health Care system. He now had constant fevers and was losing weight. He would go to the hospital and be given some diagnostic tests and sent home, but with no anti-retrovirals.

On the 25th of May, more than two months after the initial contact about David, there was still no Abacavir in the Roosevelt Hospital. I saw Dr. M in a meeting in the Dominican Republic and explained to me that the only treatment regimen available to David would have to include Tenofovir and Abacavir as well Kaletra (Alluvia). In the meantime David had constant fevers, and was growing weaker.

Finally around June 20th David's employers, who had been sympathetic throughout the process realized how ill he had become. He could no longer work, and was deteriorating rapidly. After considerable effort, It was determined that he could become eligible to go to the semi-private Infectious Diseases Hospital ("Hospital de infectologia"). Guatemala has a divided health care system and the Instituto Guatemala de Seguro Social (IGSS) is available generally only to those people whose employers pay a monthly quota for them. About 20% of the nation's population force belongs to the IGSS system. In the hospital David was finally given a cocktail of DDI, Kaletra, and Tenofovir.

David spent two weeks in the hospital, and was discharged apparently improved. But when I spoke to him on Saturday, July 10th, he was at home, in great pain, and unable to walk. I notified Rudy Felipe of the NGO where David works, and he assisted David in getting David to the emergency room of an IGSS hospital, and shortly thereafter he was re-admitted to the Hospital de Infectology, where he has been ever since. I then began calling David on a daily basis, (few poor Guatemalans have cell phones and patients cannot receive phone calls unless they have their phone). He complained of severe pain and that the dose of Tramal (tramadol) was not helping with the pain.

David's physician promised him a lumbar puncture scheduled for July 12th to try to investigate the cause of his severe back pain and difficulty in walking. My concern was that he might have had a serious opportunistic infection that had spread to his spinal column.

On the 12 th of July David awoke to the news that his physician had left for two weeks and that there would be no lumbar puncture. I finally decided to call the office of the Director of Infectology to complain about the situation. The Director's assistant listened to me during several calls as I expressed my concern about David's situation and why the promised follow was not taking place. At her request I sent my request my e-mail and still received no reply. Finally I decided to send a formal letter by FAX, I figured that sending the letter by Fax, would make it impossible for the Assistants and secretaries to ignore it.

On July 23 I called Dr. C's Secretary who claimed she had received the fax but that it was illegible. When I asked how she knew it was from me, she began reading me the first paragraph and I pointed out that it did not appear to be completely illegible. Feeling frustrated, I sent a copy of the letter to the President of the Board of Directors of the entire IGSS system, Dr. Reyes. I called his Secretary Ms Franco, who indicated that the fax had arrived and that it was perfectly legible. When I explained the entire story to her, she agreed to pass the fax directly to Dr. Reyes as soon as he arrived.

The same afternoon, last July 23rd I finally received a reply from Dr. C's secretary indicating that she was trying to contact me by telephone. In the meantime, David was taken the same day to a neurologist and given a series of tests. His pain medication was increased. When I returned this call and spoke to Dr. C's secretary yesterday July 27th, she indicated that David's Doctor had returned from vacation and that he would be beginning physical therapy for his back problem, while further tests were ordered. She also indicated that all hospital staff had denied any harassment of David related to his have sought outside support from our organization, but at the same time that they had been ordered to cease such harassment in case it had occurred.

Is it cost effective to spend the amount of time that I have spent following up on David's case?

I don't know. In total there have been over 100 e-mails exchanged and a roughly equal number of phone calls that I have made to Guatemala. Does this methodology illustrate a viable reproducible approach that can be replicated in order to help to intervene with PLWA who fall between the cracks and reduce the mortality rate? Probably, if there were a well organized local effort by Civil Society activists, who are in Guatemala with easier access to decision makers, the effort would be less. A "dedicated coalition" of perhaps 100 well trained PLWA activists, linked by e-mail and telephone in various regions of Guatemala, following up on these kinds of cases would be an ideal solution.

What I do know is that there is now over $10 million dollars of foreign aid for HIV/AIDS flowing into Guatemala each year, the majority of it from USAID and the Global Fund, and still 32 percent of all PLWA who need treatment continue to die without it. Some but not all members of Civil Society NGO's are now focused on Round 10 Global Fund projects. Will these efforts be focused on projects that will have an impact on the mortality rate? Where is the Civil Society effort focused on the more than 100 Guatemalans who die EACH WEEK for lack of access in spite of all the money that is available, and how do we create an effective activist coalition dedicated to strategically intervening with these unnecessary deaths?

The Guatemalan Health Care system has no justification to label PLWA as "non compliant" and then refuse to provide them service as occurred in David's case. They need to do better at treatment literacy programs, and that they need to recognize basic human rights principals. The fact that David made a mistake in refusing his Kaletra in late in 2009, does mean that he should receive a death sentence from the Health Ministry as a consequence. Who knows how many people that we do not know about have been marked as "non-compliant" for similar reasons, and have died as a result. Who knows how many will arrive at a hospital today and be refused services for being "non compliant."

You asked me what you could do for David in terms of advocacy. If you can find a Spanish speaking physician specializing in HIV/AIDS in the Bay area, (I am sure there are several), you could ask for an opinion about this clinical summary, (attached) and if there are any suggestions. (Of course the Doctor doesn't really have to speak Spanish, if you went over the summary with him, you could translate what is not obvious. Mostly its reports of tests, etc that is probably the same in English as in Spanish. So it wouldn't take much time at all).

I have been in direct phone contact with his physician. He has been friendly, but very guarded. He will do what he is trained to do, within the limits of the IGSS system. He is right about David having gone about 7 months without any ARV treatment and with a CD4 count of near zero. This was NOT David's fault, it was the problem of the public system not having the Abacavir, as you recall.

He has been quite frank in stating that the prognosis for David is not good. (See what I have underlined below from his letter to me). But this is also as if to prepare me (or whoever else in interested) for the possibility of David's death, and he is not going to do more for David than what is the typical approach in the system in which he works. He is not considering changing any part of the treatment, even though David is quite ill.

Anyway, I am kind of grasping at straws. A U.S. Doctor could probably see this report, and have some good ideas, but I am not sure what could be done in Guatemala. If David were in San Francisco, I am sure that he is still healthy enough to be successfully treated, because the US has so much more to offer. In fact it would be so simple as to put him on a medication called raltegrevir (Isentress) that is often used in cases such as David's but is not available in Guatemala due to the price of $8,000 per year charged by Merck.

I think David's physician would speak with a U.S. Doctor. He is guarded but he knows that a lot of people are paying attention to David's case, so if something was available to him, maybe he would try it.

Saludos

Richard

Estimado Rick: Le estoy adjuntando el resumen del caso del David.

Le comento que la información recibida por usted ha sido erronea y quizá se comunico con algunas personas que lo confundieron más.

Me gustaría que le reenviara esta información a las personas que usted haya contactado para que vean cual es la realidad del caso y no insinuen ese tipo de comentarios.

Como usted sabe un paciente que luego de 10 años de saberse infectado que no ha tomado en serio su enfermedad paga muy caro esas consecuencias, nosotros conocemos el caso de David desde hace 3 años pero también abandono el tratamiento en nuestra institución; (this is not actually true‹david left the IGSS system because he changed Jobs) y hace 1 mes se retomo el caso y se decidió implementar terapia de segunda linea o rescate inmediatamente.

No tenemos Tenofovir en nuestra clínica y al iniciar el DDI que conocemos perfectamente el fármaco, el paciente ya presentaba esta sintomatología, además por el historial de experiencia a antirretrovirales, este es el fármaco que puede serle útil en este momento.

Su conteo de CD4 es de 4 (1%) que aquí y en cualquier parte del mundo es un riesgo muy alto de infecciones oportunistas y muerte.

En este estado de enfermedad tan avanzada cualquier complicación es posible y la Anemia es consecuencia de ello, incluso es un factor predictivo negativo, por esa razón fue manejada con altas dosis de Eritropeyetina y terapia transfusional hasta alcanzar un nivel de 11.4 que en este momento es adecuado.

Considero que se le esta dando todo el soporte necesario y dandole la oportunidad ha que responda a el tratamiento instituido, protegiendole con fármacos profilacticos para paciente con CD4 < 50 (que tambien tienen efectos adversos).

Desde hace 1 mes de haberlo iniciado y esperando que responda favorablemente y que lo tolere satisfactoriamente sera evaluado por consulta externa mensualmente teniendo claro que puede requerir tratamiento hospitalario nuevamente en cualquier momento.

Confiando en que esta información sea de utilidad y que aclare sus dudas estoy a sus ordenes.