August 16, 2010

Anselmo Fonseca: Fighting HIV/AIDS in Puerto Rico

As one of Puerto Rico's leading AIDS advocates, Anselmo Fonseca faces daunting challenges. An estimated 11,000 people are living with AIDS in the U.S. commonwealth. The island's governmental AIDS programs have been plagued with corruption. The state and federal agencies remain at constant odds over funding and power. Then there are profound issues of stigma, injection drug use and a lack of HIV services in rural areas. Fonseca updates us on the state of the HIV battle he and Pacientes de Sida Pro Politica Sana are fighting today in Puerto Rico.

What was your inspiration for creating Pacientes de Sida Pro Politica Sana in 1999?

My partner [José F. Colon] and I heard news on the radio that the governor of Puerto Rico was being named as a possible victim in the San Juan AIDS Institute scandal [in which officials were eventually convicted of stealing more than $2 million in federal AIDS funds for personal and political gain]. We looked at each other, both being PWAs [people with AIDS], and said, “This is not right. We cannot allow the media to take things out of context. There is no way that the politicians are the victims because the real victims were us, the patients, the family members of those that died and had to leave and look for services elsewhere.” It was the indignity of seeing how politicians were once again looking to claim themselves as the victims and not the victimizers.

There’s a large population of injection drug users throughout the San Juan metropolitan area. How does your program help them?

We don’t provide services directly to the clientele. Other than referral and case management, we do advocacy through policy development, local leadership, legislation and the health department. Other [nongovernmental organizations give us] input on what they think should be reaffirmed, modeled and mimicked. For example a needle exchange program: We put our support behind that, and we do a lot of research-oriented documentation in regards to developing sane policy—basically what the title of our organization is. [Pacientes de Sida Pro Politica Sana translates as AIDS Patients for Sane Policies.]

How will the recently enacted National HIV/AIDS Strategy (NHAS) affect Puerto Rico?

Puerto Rico was one of the 14 sites [where federal officials held town halls to gather information to write the NHAS]. I was one of the town hall community coordinators, and we have been very involved. The plan is heading in the right direction. It is clearly not a one-time fix-all situation. So the health reform is a good step forward, and the National HIV/AIDS Strategy is another step. We just have to make sure that whatever we don’t get covered under health reform that we get covered through the National HIV/AIDS Strategy. It is a well thought-out document. It is good that there is also an actual implementation document put out as well forcing the federal agencies to put together plans. We understand that it will give us more oversight tools to make sure that local compliances are being met.

We as an organization are apolitical because HIV/AIDS has no colors and no boundaries. Our present governor is a Republican, and it’s been very rare, if ever, that we have been able to synchronize political affiliation on the mainland as well as here between Democrats and Republicans. It hasn’t happened, and there is this constant tug of war between ideologies and local implementation. Therefore, we’ve gone more to the federal level because if we are going to see positive change that is going to have a real impact on us here it is going to come from the federal level.

Can you elaborate on how the current Puerto Rican government is altering your health care system?

Basically [health care in Puerto Rico] at one point was something to be modeled after, but it became something disastrous. This governor has made some tweaks in the health reform and privatized a lot of the responsibility, taking it off the central government and moving it to pharma. A lot of private relationships are developing, and that’s very worrisome because if the state-run clinics were pushed away, my main concern is what is going to happen to them?

On a more personal note, you’ve been with your partner for 15 years—you two even cofounded Pacientes de Sida Pro Politica Sana. Has that relationship helped with your own positive status?

I would say that it is still tough. Although we are both very committed because we are both positive and we have lost so many friends and family members, at times it becomes a dividing force between us. We are basically a yin and yang. The relationship has its glorious moments, and we can be a force to reckon with when we get our thoughts and strategies well planned beforehand. But we tend to have different views on things, and so being together can be very draining on a personal level. But I feel that in the long run it’s really been beneficial because we have been able to do so much more for others and not just within the one-to-one interaction and intervention aspect but rather as a whole and establishing better policies for our community.

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Previous Comments:

Jorge Santiago, Orlando, Fl, 2010-10-07 12:20:58
Kudos 2 u n your partner 4 taking on this endeavor. I am a PRican who lived in NYC 4 30 yrs, in Orlando for the past year, HIV+ since 1992, I tell u care in both states is awesome. I visit PR often, at times think of relocating. My fear is the poor medical care given to all patients in PR, there is no compassion 4 those in need. My mom is 83yo n it breaks my heart everytime she visits with her MD, she spends the entire day waiting at the MD office 2 b seeing, it's outrageous.