Miguel Mendez Speech to the Reunion Latina 2011

Thank you to Daniel Leyva from the Reunion Latina Training Planning Team for

inviting me to speak at the Reunion Latina Annual Dinner, and of course a big

thank you to the Latino Commission on AIDS for hosting this beautiful event.

Now I hope that I seem relaxed at home and como entre familia, like I belong up

here wearing my suit and tie about to embark on a big speech, a speech about

health care reform, the National HIV/AIDS Strategy, immigration—all the policy

questions of critical importance to our Latino community.

But things aren’t always quite what they seem. Who are you, quien eres? You

may be asking. Brothers and sisters, yo soy el esposo con SIDA, el hijo,

hermano, primo, tio, compañero y vecino que tiene SIDA. I am the husband with

AIDS, the son, brother, cousin, uncle, friend and neighbor who has AIDS.

HIV and AIDS affect all kinds of people from all different backgrounds. Before I

address head-on our fight to end AIDS in the Latino community, I need to tell you

my story. How I got here, on this stage tonight, wearing a suit and tie. Looking

happy, healthy and well-fed. Because our debating, our passionate arguments

for or against different strategies to fight AIDS, in the end, are really about

people, about individuals living with HIV, individuals such as myself.

So, let me take you back to the poverty-stricken, drug infested section of

Williamsburg, Brooklyn, “The South Side” or Los Sures, el barrio where I grew up

in the 1970s. In those days, you did not see white goateed hipsters

skateboarding to yoga. As a kid, I used to look out the back window of our

apartment at an abandoned building and watch the huele pegas, the glue

sniffers, doing their thing. In those days, huele pega was an insult--but those

guys were having a grand ol’ time. And I was always happy to see them. To get

the glue that they sniffed, the huele pegas had to buy airplane or car models

meant for kids. They didn’t give “un enfueno” about the models. They would just

grab the glue and throw the model aside. What an opportunity! After the huele

pegas were gone, I would crawl into the abandoned building and scoop up the

discarded models. Guys this was free toys, Christmas and birthdays on a regular

basis!

Now I hope this is a charming story, but it had a downside: Like many urban

Latino kids, I had already begun to see drug use as cool. And, like many urban

Latino kids, my home life was full of turbulence and quite challenging. By the time

I was 16, I was heavily into heroin and running with gangs. By my mid-20s I was

a high-functioning addict, dealing drugs to supplement my income and my habit.

Since I’m giving this speech at an AIDS gathering, perhaps you have an idea of

where this story is headed.

But even after AIDS arrived in the early 80s, even after I spent nearly a decade

watching friends, family and fellow drug users die, I still didn’t have a clue what

was in the cards for me. By 1991, I thought I had finally pulled my act together.

Thanks largely to Narcotics Anonymous and my faith in Jesus Christ, I was drug

free. I was also out of the relationship with the mother of my first three sons, and

I was in an exciting new relationship. And I wanted to prove to my new honey

that we did not need to use condoms. Every one that I knew who had AIDS had

died almost immediately—hey, I thought I’d made it! Got over, scot-free!

So I took an HIV test. And I tested positive.

Now, in 1991, hope was in short supply for people with HIV. For six months

straight after I was diagnosed, the sky was always gray. I felt like I was in a

perpetual thunderstorm. I would cry all the way to work. Man I could taste the

salty lagrimas. How did I get through it?

Like many of you, by helping others worse-off than myself. I started working as

an outreach worker in South Yonkers, Westchester, NY. I drove a van “Mobile

Unit” for a CBO called “The Sharing Community.” Needle exchanges were illegal

in Yonkers, so we did the next best thing, we took the people we served across

the border into the Bronx for clean needles and we provided the bleach kits

including cookers.
To my great surprise, a couple years after my diagnosis, I was doing great. I

looked great. Like some of us with HIV, I had gone holistic: exercising, eating

healthy, doing acupuncture, taking herbs. I even had a great new job, as a case

manager at a fairly new AIDS organization called Housing Works. I couldn’t

believe that I was making a career out of my passion to help people.

Still, my charity had limits. I was fine venturing into tough neighborhoods and

working with strung-out addicts, going into shooting galleries or crack dens. But I

was not comfortable dealing with the other group suffering most from AIDS:

homosexuals. My first week at Housing Works, I saw the organization’s co-

Executive Director, Charles King, casually greet his partner, Housing Works’

other co-Executive Director, Keith Cylar--with a kiss on the lips. I literally ran to

my phone, called my wife at the time and told her to update my resume because

I was out of there.

I can look back and laugh today, but my homophobia and the homophobia of my

traditional Catholic upbringing ended up costing me--dearly. Only two weeks after

the co-Executive Director’s public display of affection shook me to my core, I

went to a Division of AIDS Services “DAS” Center, in the Kingsbridge section of

the Bronx. I was escorting one of the client’s assigned to my shared caseload

who was having trouble getting housing assistance. As I entered the office, I saw

a frail-looking woman and did a double take. The woman had lost most of her

hair and looked like an old lady, but I still recognized her, it was my sister
Yolanda. I hadn’t seen her for five years. I called out her name. She looked at

me. She could barely stand up. We hugged and we cried.

Yolanda was a lesbian. When my stepfather found out, he made her use a

separate set of dishes because he thought being gay was contagious. He told

me that she was no longer my sister, no longer part of la familia. No wonder she

had disappeared from our lives. She had been cast out.

This all happened on December 22, 1993. Reunited, Yolanda and I made plans

to see each other on Christmas Day. I never saw her alive again. On Christmas

Eve, her lover called and told me that Yolanda had passed away. Her ashes

were spread over un rio in Fajardo. El pueblo donde nacio mi madre.

Yolanda gave me a precious gift before she died. If it hadn’t been for seeing her

in that DASA office, I would never have faced my homophobia and stayed at

Housing Works. I believe, I would have never learned to love two of my sons who

are gay, unconditionally. If I hadn’t stayed with Housing Works, I probably would

never have gone back to school. I would never have earned an associate’s

degree in computer science a bachelor’s degree in communications or a Master’s

in Computer Engineering, from Polytechnic Institute of New York University. I

would not have risen through six promotions to become a senior vice president at

the largest minority-controlled AIDS organization in the country. Without my sister

Yolanda, I would not be standing before you on this stage and for the first time in
my life, coming out publicly about living with AIDS.

In a moment, I’m going to say some pretty harsh things about President Barack

Obama, health reform and the national HIV/AIDS strategy. I wouldn’t be true to

the memory of my sister if I didn’t say them. I wouldn’t be true to myself. Yes, I

just came out of the closet about being HIV positive. But I’m not having a

“kumbaya” moment. I have survived AZT, hepatitis C, pneumonia, depression,

AIDSphobia--to name just a few of the challenges of living with HIV. I am not

about to give up now. I’m going to fight all the way.

Our nation’s response to the AIDS epidemic has shifted dramatically in the last

year. In July, President Obama unveiled his National HIV/AIDS Strategy. The

strategy has big, big flaws. But it’s also a breakthrough. If we do it the right way,

our National AIDS Strategy could transform the way we fight the AIDS epidemic

in this country. The other huge change this year was the passage of the

Affordable Care Act in March, which will have a large impact on Medicaid.

I know that many of you were happy, joyous even, about the National AIDS

strategy–the Latino Commission on AIDS put out a press release congratulating

Obama. But I have to be honest. I found it medio crudo, not completely cooked,

“half-baked.”

Yes, the strategy talks about HIV-related racial disparities and health imbalances.
Yes, it calls for community-based, culturally appropriate HIV prevention. Yes, it

seeks to increase the number of HIV-positive Latinos and African Americans with

an undetectable viral load. It even goes much further. Its goal is to make the

United States a place where, and I quote, “HIV infections are rare.”

Now, it’s one thing to have a vision and quite another to make it a reality. As

somebody who has been spent 20 years coping with a fatal disease, I can tell

you, this plan is out of touch with reality. Way out of touch. We’re 30 years into

the AIDS crisis. Our national AIDS strategy calls for a reduction of new HIV

infections by a mere 25 percent by 2015. Mis amigos, that will be too little too

late! Even if the president’s plan succeeds in reducing new infections by 25

percent in the next five years, we will still be faced with more than 250,000 new

HIV infections in 2015, that’s right en cinco años! That is too slow! Latin men are

diagnosed at three times the rate of white men. Latinas are diagnosed at five

times the rate for white women. We are more likely to die sooner after an AIDS

diagnosis than Whites.

Yet few of us have criticized the National AIDS strategy. Most groups greeted it

with cheers and applause. As the plan gets implemented, I urge the Latino

Commission on AIDS and other Latino AIDS organizations to raise hell when the

administration lets us down. The plan is already eight months old. Many of the

federal agencies that are supposed to implement it have offered only vague

ideas about how to do so. And there is no federal money to support President
Obama’s strategy. I can tell you, we are in for a long fight.

There are two other major problems with our new national AIDS strategy: its

failure to address the ADAP crisis and housing for people with HIV/AIDS.

Nearly 7,000 people are on AIDS Drugs Assistance Programs wait lists. That’s a

scandal. And yet Obama’s national AIDS strategy does not address those

waitlists whatsoever. Our community is deeply affected by the ADAP crisis.

There are nearly 200,000 people enrolled in ADAP and 26 percent, or about

50,000, are Latino. And yet no Latino organizations criticized the president’s

AIDS strategy because it did not address the ADAP crisis. We will never be a

nation in which “HIV infections are rare,” if we do not ensure that our poorest

citizens with HIV are enrolled in health care, eso es asi.

With regard to housing, the National HIV/AIDS Strategy is pretty much silent. It

completely disregards housing as an HIV prevention and treatment strategy.

Now I know that when most people think of HIV prevention and treatment, they

think of testing, condoms, early intervention, needle exchange, and so forth. I

believe deeply in all of these and other conventional strategies to fight AIDS. But

I want to make the case to you that housing is just as necessary, just as urgent—

that housing should be considered just as conventional.

Right after the release of Obama’s AIDS strategy, the CDC released a

groundbreaking analysis of HIV in urban areas. The report showed that 2.1

percent of heterosexuals in high-poverty urban areas in the U.S. are infected with

HIV.

That means that HIV is a generalized epidemic in these communities. It also

means that all sexually active adults are at high risk of becoming infected in

those communities. Our urban poor are in the midst of an AIDS epidemic on par

with the one in Haiti.

The analysis also showed that poverty is the single most important factor

associated with HIV infection among inner-city heterosexuals. One of the study

authors, Dr. Kevin Fenton, the CDC’s head honcho “El Hombre” on HIV, said the

following: “There is a growing recognition that to significantly reduce new HIV

infection in the United States, we need to address the larger environmental and

structural risk factors that fuel HIV, such as poverty, homelessness and

substance abuse.”

All due respect to Kevin Fenton, I did not see that recognition in President

Obama’s AIDS plan. The plan includes one minor reference to housing in its

prevention section, uno… tu estas loco?

The Obama administration put out another report last year called Opening

Doors: Federal Strategic Plan to Prevent and End Homelessness. That report
acknowledged that people who have housing assistance have reduced HIV risk

behaviors and improved health care outcomes, que cosa. Opening Doors said

that housing assistance coupled with health care decreases overall public

expenses, que dices?

Let me put it more plainly. When you have a home, you don’t have to trade sex

for shelter. When you have a home, you have a refrigerator for your meds and a

phone to call your doctor. When you have a home, you can build a support

system of friends and family. When you have a home, you have an address that

you can give to potential employers, so you can get a job. And best of all, when

you have a home, we ALL save money! If you’re not familiar with the National

AIDS Housing Coalition, I urge you to check out their website,

NationalAIDShousing.org. The site compiles all the amazing research about

housing and AIDS.

See what happens when you invite someone from Housing Works to give a

speech? He talks about housing!

Joking aside, I challenge all the Latino organizations here tonight to make

housing one of their top priorities. As Obama’s AIDS strategy gets implemented, I

challenge you to demand funding for housing and supportive services to

homeless and low income Americans living with HIV/AIDS.

My feelings about health care reform are similar to my feelings about Obama’s

AIDS strategy. The Affordable Care Act breaks new ground. We also need to
make big changes to it or it won’t help Latinos with HIV/AIDS, mi gente.

Fans of health care reform–especially in the AIDS community—are excited about

the expansion of Medicaid. But not so fast. President Obama appears to be

bowing to pressure from governors who want total control of their Medicaid

programs. That could spell disaster. Let me give you one very scary, very real

possibility.

In 2004, Mississippi Governor Haley Barbour decided to save money by limiting

Medicaid recipients to five drugs per month—but only two of them could be name

brand. This is a frightening prospect for people with HIV. We frequently depend

on name-brand drugs for which there are no generic alternatives. In 2005,

Housing Works and others sued Governor Barbour in federal court. Lo and

behold, Mississippi agreed to create a waiver for HIV-positive Medicaid

recipients. That was great for people with HIV--not great for everyone else on

Medicaid in Mississippi. If President Obama gives over control of Medicaid, we

could face dozens of Haley Barbours. And we would have limited legal recourse,

entiendes?

Right here in New York, Medicaid cuts could erode the quality of care. Our

governor is considering requiring pre-approval on antiretrovirals for Medicaid

recipients. He is also considering including antiretrovirals on our Preferred Drug

Lists, while eliminating the “provider prevails” provision. This simply cannot
happen, no puede pasar.

The Affordable Care Act also neglects undocumented immigrants. In his big 2009

speech, President Obama practically boasted that health care reform would not

apply to undocumented immigrants. Te acuerdas, when Senator Joe Wilson

couldn’t take it. He yelled, “You lie!” Wilson apologized, pero te digo, he wasn’t

wrong. States and community health care providers do find ways to funnel

federal money to care for undocumented immigrants. It is our little secret that

there is no preclusion from using Ryan White Care Act money in this way. We

need to discuss this situation publicly. Going public is a risk. But unless we speak

truthfully about the federal government’s refusal to comprehensively address HIV

among undocumented immigrants, we will never end AIDS among Latinos in the

U.S.

In New York, the Latino Commission on AIDS has called for community services

for undocumented immigrants, for testing, and for linkage to healthcare. That

should be only the beginning. Latino AIDS groups must get involved in the fight

for immigration reform and win the trust of immigration advocates and immigrants

themselves. We must join our agendas so that the national movement for

immigration reform addresses AIDS. Where were we during the fight over

Arizona’s “driving while undocumented” law? Where are we now as that state

continues to embrace anti-immigrant policies?

Finally, I must touch on Puerto Rico, the island of my parents’ birth. Puerto Rico

and other U.S. territories were forgotten in health care reform. The federal

government covers at least 50 percent of the bill for states’ Medicaid programs.

However, it caps the Medicaid dollars it gives to U.S. territories. As a presidential

candidate Mr. Obama said he wanted to “raise the cap on federal contributions to

Medicaid in Puerto Rico until it disappears.” Puerto Rico has received a bump up

in Medicaid—but nowhere near parity with U.S. states.

Insufficient Medicaid funds force many Puerto Riqueños living with AIDS to rely

on Ryan White Care Act programs. But Puerto Rico’s Ryan White money has

been notoriously mismanaged. The bottom line? Access to AIDS drugs in Puerto

Rico is under constant threat. Of course, Medicaid alone will not solve Puerto

Rico’s AIDS crisis. 40% of HIV transmissions in Puerto Rico are among IV drug

users, yet the Puerto Rican government refuses to use its own funds for needle

exchanges and other drug user health services.

In 2010, an AIDS organization in Fajardo, documented the deaths of five drug

users who would have lived if they’d had adequate health care. Just last month,

they held a rally to demand that, el alcade, the mayor of Fajardo take action. The

slogan they used on their T-shirts touched me: Yo tambien soy Fajardo. What did

that mean? It meant that everyone in Fajardo—even the lowly drug users with

HIV—deserved dignity and health care. Recuerda, Fajardo is where my sister’s

ashes were scattered.

Not so long ago, I wouldn’t have understood this slogan. I was in denial about my

drug use. I was in denial about the possibility that I might have HIV. I was in

denial about my homophobia. I had to lose my own sister to understand that, yes,

Yo tambien soy Fajardo. To understand that “Somos todos Fajardo.”

Latinos have suffered extremely from AIDS. We must demand a comprehensive

government response to the epidemic–not the half-measures, medio crudos that

we have been forced to live with for three decades. I too have a vision of the

United States were “HIV infections are rare.” A vision of a United States where

the chronically ill have housing and healthcare and supportive services. In my

vision, the United States respects immigrants, a respect that includes healthcare,

and HIV prevention and treatment. In my vision, the United States meets its

obligations to Puerto Rico.

Standing before you tonight, I am a long way from those days in Williamsburg,

when I gazed out the window at the huele pegas. The AIDS epidemic has taken

innocence away from all of us, taken away the lives we should have been able to

lead. But today, AIDS is preventable. AIDS is treatable. If we fight, we can heal

our community. We can live as we should.

Tonight, I leave you with a simple Spanish Proverb: A Dios rogando y con el

mazo dando. Thank you.