Enrique Chavez, a native of Lima, Peru, was excited about the prospect of joining his father and sister in the United States in 1991 when his father, a Green Card holder at the time, sponsored him for immigration. However, that dream quickly vanished when he was tested positive for HIV during the medical exam required for prospective Green Card applicants. The officers at the U.S. embassy told him that result made him ineligible for immigration to the United States.
"The doctor told me I had one year to live," said Chavez, calling the diagnosis a social as well as a medical one. "I went into depression." His job at a trading company was not renewed because his boss found out he was HIV positive, and a neighbor threw rocks at his house. His family was extremely supportive, but it took him another 12 years before he finally immigrated to the United States.
On Oct. 30, President Barack Obama made a major announcement that should help prevent similar stories in the future. He removed a 22-year-old ban on travel and immigration to the United States by individuals with HIV or AIDS. Calling the ban "a decision rooted in fear rather than fact," Obama also reauthorized the Ryan White Comprehensive AIDS Resources Emergency Act, which funds the largest program in the country to provide care and support for people living with HIV or AIDS.
"We lead the world when it comes to helping stem the AIDS pandemic -- yet we are one of only a dozen countries that still bar people from HIV from entering our own country," the president said. "If we want to be the global leader in combating HIV/AIDS, we need to act like it.”
Many applauded the announcement, saying it finally ends the discrimination.
"HIV or AIDS is just another disease like diabetes," said Chavez. "It transmits, but it is not contagious."
After the diagnosis and the loss of his job, Chavez, still in Peru, started volunteering at the local AIDS organization, Via Libre, which eventually offered him a staff position. Miraculously, he continued to live without any HIV medication because it was not available. But seeing many people suffering helplessly, his dedication to HIV/AIDS advocacy work grew stronger.
"I watched my friends die," he said. "Sometimes three or four died in one night. I need to work hard to make sure they have medicine and better quality of life."
In 1996, Chavez started to take medication through a program run by Aid for AIDS, a New York-based organization that provides services to people living with HIV or AIDS in Latin America and the Caribbean as well as immigrants from the region. It is called the HIV Medicine Recycling Program, which provides unused medication to patients in Latin America. The organization also runs other programs, including AIDS treatment access, immigrant program, children’s program, and prevention program among other things.
In 1998, Aid for AIDS established a branch office in Lima and hired Chavez. As he gained prominence in the HIV advocacy world in Latin America, his missed his father and sisters in the United States. In 2003, after a one-month trip to the United States on a one-year double-entry visa with a special HIV waiver, Aid for AIDS asked him to relocate to New York to serve as its director of advocacy. But his HIV status came up again as a problem. This time, he sought political asylum.
"In my case, I had to prove I was persecuted because of my sexual orientation and my activism," said Chavez. "In addition, I had to prove that there was no medication available to treat HIV in my country."
Chavez is one of the few lucky ones. Obtaining legal status through seeking asylum is not an easy task and it requires a lot of supportive material, according to Vishal Trivedi, project manager of the Immigration Project at Gay Men’s Health Crisis, which provides direct legal representation as well as consultation.
"You have to submit the application within a year of your entry," Trivedi said. "The basis of asylum is either past persecution or a well-founded fear of future persecution. You can argue that because I am HIV positive, I was a target of persecution or it is likely I will become a target. … I would be beaten, tortured or killed and there is no government protection."
"The burden of proof is on the applicant," said Trivedi, adding that proof can include documents such as State Department reports, reports by Human Rights Watch, newspaper articles, scholarly study and eyewitness testimonies.
For Eric Wong the obstacles proved too great. A native of Hong Kong, he came to New York in 1998 as an international student and tested HIV positive in 2000.
"I cannot seek asylum because I am not persecuted in Hong Kong, and there is medicine available," said Wong, who used a false name to protect his privacy. "But everybody has preferences in terms of where to live. This is where I feel most comfortable."
After graduation, Wong worked for a company on a H-1B work visa for six years until the visa expired. When the company offered to sponsor him for a Green Card, he declined, fearing that the medical exam required for the application would reveal his HIV status. He later switched to a different employer and obtained another temporary work visa under a different classification.
Obama’s announcement brought him hope.
"It was huge," said Wong. "I was in tears. Who would’ve thought? It is like part of my dream came true. Now I realized that I actually have an opportunity, even though it is very slim."
To Wong, immigration is a race with time. His current job is not permanent and will most likely end next year. So the Obama announcement could provide a reprieve. Now that his HIV status is no longer a roadblock, he can try to obtain a work visa other than H-1B.
Wong wants to get an O Visa, which is granted to people with extraordinary abilities. His lawyer said this would be difficult. Another alternative is to get married. But being gay, he cannot marry his longtime partner in New York and does not want a paper marriage. Wong does plan to enter the diversity visa lottery, which allows citizens from countries with low immigration to the United States to enter to win a Green Card.
The entry ban, introduced during the peak of the AIDS pandemic, was written into immigration law in 1993. It included mandatory HIV-testing as part of the medical exam.
The rule has had a long-lasting effect on Wong, who is paranoid about traveling. "Every time I left the country, I had to flush all my pills down the toilet on the way back before I got off the plane," said Wong. "What happens if they check my luggage and find all those pills? I was afraid to travel. Everything was in limbo."
In addition to the stress and anxiety, the cost of HIV medicine is also prohibitive. Wong pays $1,000 a month for his health maintenance organization because his employer does not provide health benefits.
"But I am lucky to have a job and could afford the medicine," said Wong, who prefers to pay for his own treatment rather than to seek help from HIV organizations. "My insurance is expensive but it doesn’t have many restrictions. My immigration problem is stressing me out already, so I just want to make sure I have a good health insurance."
The solution is not simple, and the cause is even more complex. That's what experts and advocates say about the reemergence of syphilis in New York City and across the country. The number of cases among both men and woman and in all ethnic groups has risen, but the disease hits some parts of the population more severely than others.
In an effort to combat syphilis and other sexually transmitted diseases, the city health department handed out a record number of free condoms this year. Government and private groups have launched public education campaigns, and free testing clinics exist around the city. Still, as the numbers continue to rise, advocates think the city and health organization must design campaigns more closely tailored to the group hardest hit by the increase in the infection: men of color who have sex with men.
In 2000, the national syphilis rate fell to its lowest point since 1941. But it has increased annually since then; New York City cases nearly doubled to 282 in 2001, according to the Centers for Disease Control and Prevention. This year 1,079 cases were reported, up 12 percent from last year. City health department data shows that the highest concentration of syphilis is in Chelsea.
Men who have sex with men account for 87 percent of cases, with the disease most prevalent among African-Americans. Well over half the victims are HIV positive.
"The connection between HIV and syphilis is really disturbing," said Sean Cahill, managing director of public policy, research and community health at Gay Men’s Health Crisis in Manhattan.
Syphilitic sores facilitate transmission and contraction of HIV/AIDS. And the same is true the other way around -- anything that weakens the immune system makes people more vulnerable to other infections.
This bacterial infection spreads through skin-to-skin contact. Congenital syphilis is passed from a mother to her child during childbirth. According to the website of the New York City Department of Health and Mental Hygiene, antibiotics can cure syphilis, but the chances of curing the infection becomes more difficult the longer someone waits to get treated. The most infectious stages of the disease are primary and secondary syphilis. These stages are also the easiest to treat.
Experts point to a number of factors that have contributed to the resurgence in syphilis. One is what health experts call "risky sexual behavior," including having unprotected sex and having multiple partners. The 2009 Mayor's Management Report, for example, attributes the rise in the disease "primarily to increases in risky behavior among men who have sex with men." One factor here is substance abuse.
Jose Gonzalez is the founder and president of TRI Center, which offers rehabilitation services in Manhattan, Brooklyn and the Bronx. Gonzalez said there was a "high correlation between sexually acting out and the drug use." He added that education about how to avoid HIV and sexually transmitted diseases can be part of some people's treatment plans. Engaging in high-risk sexual behavior and other compulsive behavior is "just one of the medical aspects of the disease" of addiction, Gonzalez said. He said health clinics should ensure that clients who test positive for STDs are asked about their substance habits to see if they need more comprehensive care.
At the Lesbian, Gay, Bisexual and Transgender Community Center, substance abuse treatment focuses on the clients' particular vulnerabilities. "We’re looking at the areas we would call 'disconnections,'" said Carrie Davis, the director of adult services who also directs the center's CARE Wellness and Recovery programs for substance abuse treatment and prevention.
Social stigmatization can cause these "disconnections" or "isolations," as can particularly difficult transitions in people's lives, like coming out to family members. Hard times can lead to substance abuse and other risky behavior, which could play a factor in the spread of sexually transmitted diseases.
"From an overall prevention standpoint, I think it's really critical that we de-stigmatize LGBT identities," said Davis.
Unprotected sex also has to do with inadequate or absent sex education for young people, said Cahill from Gay Men’s Health Crisis.
While condom use has increased around the city, Cahill said not everyone uses them properly. For example, some people may use lotions that render the condom ineffective. Susan Blank, assistant commission for the city's Bureau of STD Control, said people reported not using a condom during oral sex, when syphilis also can be transmitted.
But risky behavior cannot explain the racial disparity incidence in sexually transmitted diseases. In 2006, non-Hispanic blacks of all ages had the highest rates of chlamydia, gonorrhea and syphilis of any group nationwide, according to the Centers for Disease Control. But national and New York City studies show that gay and bisexual African-American men do not participate in behaviors deemed "risky" at a higher rate than white men who have sex with men.
A New York City report produced as part of the National HIV Behavioral Surveillance Study found that white men who have sex with men "had the lowest HIV prevalence, yet higher rates of many HIV risk factors." For example, binge drinking and alcohol use during sex were more common among whites.
New York City is one of 25 sites participating in the national study, which began in 2004 and focuses on at-risk populations.
Patrick Wilson, an assistant professor and researcher at the Mailman School of Public Health at Columbia, is among those studying why African-American men have higher rates of syphilis than white men. He says a key factor is an individual's "sexual network," such as the number and profile of partners.
In addition, Wilson has found, there is a kind of vicious circle at work here: The prevalence of syphilis and other sexually transmitted diseases among African-Americans produces high rates of HIV and vice versa. Also, Wilson has looked at the characteristics of the sex partners and has found evidence that young African-American men tend to have older partners. Older partners, by virtue of their age, are more likely to have syphilis themselves and more likely to have sex with men of the same race/ethnicity, said Wilson.
And then there is access to health care.
"Access to treatment and health care is a huge issue," said Wilson, Dealing with that, he said, is "not an easy step to take but it is a step that we can take."
A 2007 report by the city health department in 2007 found that " Hispanics, men, younger adults, people with low income, and residents of the South Bronx, South Brooklyn, and West Queens are more likely than others to lack insurance and a regular provider." It determined that 25 percent of Hispanics, 21 percent of Asians/Pacific Islanders, 16 percent of blacks and 11 percent of whites in New York City were uninsured in 2005.
The study also compared data on testing for HIV, finding that "among those with two or more sex partners in the past year, those without a regular provider are less likely to have been tested recently." Delaying treatment increases the severity of the virus and likelihood that the infected person will pass it on, whether it's HIV or syphilis.
The Latino Commission on AIDS, based in Manhattan, has tried to create a space geared specifically toward Latinos. The commission’s director of health policy, Oscar LĂłpez, pointed to their MPowerment Project as particularly successful and effective.
"The focus is building community and addressing the feelings of isolation that many experience,” said LĂłpez, who explained that many of the members only speak Spanish and are separated from their families. While the commission only offers HIV testing, the experiences of its members indicate many avoid other types of testing or care. LĂłpez said many of the men he works with have a "mistrust of the system" or worry about deportation, so they either do not seek medical attention.
The city tries to encourage these men to overcome their fears. Its Bureau of STD Control operates 10 free and confidential testing clinics: three in Manhattan (although one in Central Harlem is closed for renovations), three in Brooklyn, two in Queens, and one each in the Bronx and Staten Island.
Blank said that staff doesn't ask for immigration papers before testing a patient. LĂłpez agreed that he had never heard of such a case in New York City, but that undocumented immigrants had been picked up in other states and these stories can act as a deterrent.
The current resurgence in syphilis is surprising but not completely unexpected due to the many factors working together to spread the disease, said Wilson. He believes the trend will reverse but only with a lot of work.
"It really depends on our prevention and our treatment efforts and how robust those efforts end up being," Wilson said. And those efforts have to correspond with the actual trends and the reasons for those trends. According to Wilson, doing that also requires support from all levels of government and funding to bolster efforts already in existence.
On a state level, the New York State Department of Health, AIDS Institute and Center for Community Health, and Health Research, Inc. accepted grant applications last month for organizations working with gay men and men of color who have sex with men.
The city also has made efforts to collaborate with community-based organizations to combat the spread of syphilis. The Syphilis Advisory Group, formed as a direct response to the flare up in 2002, according to an email from the health department press office, is a coalition of the health department, the New York State AIDS Institute and community-based organizations that work with gays and lesbians. The group aims "to improve the quality of internet-based HIV and STD prevention, as well as partner notification services."
The Internet could play an increasing role in this, according to Wilson. Companies have created anonymous online notification systems to allow people to inform past sex partners if they are at risk of infection and encourage them to get tested.
Davis also would like to see advocacy and information at commercial sex venues, where adults to pay to engage in sexual activity on site. This, he said, could keep the parties from going "underground."
The advisory group is looking into this too with the Commercial Sex Venues Workgroup. With the help of the health department, the group plans to "establish new community partners (e.g., owners of sex clubs) to raise syphilis awareness in these venues, increase condom usage, and encourage regular STD screening."
Gay Men’s Health Crisis currently provides testing at three commercial sex locations in the city, said Cahill.
In the past, the city had tried to shut down such establishments. Cahill said he did not see a push for closures recently. But these are fights that date back to the early years of the AIDS epidemic and government closures of bathhouses in an effort to stem the rising crisis.
With the AIDS crisis, there was a tendency to blame the victims. With syphilis, Wilson and others said it is important not to do that.
"There’s not a sound bite that can really explain how this happens," he said. Dwelling on that, he said, could only end up “maligning” affected communities.
Instead, Wilson said, efforts should remain focused on targeting the numerous facets of the disease: "We’ve still got a firefight going on. It’s not at all over."
The financial stakes of federal health care reform are high. I am a strong believer that we need to rethink the way we provide health insurance for all Americans. However, I also feel strongly that the health care reform legislation currently under consideration in the United States Senate can and must be made better for the residents of New York State.
As New Yorkers, we should be proud of our state’s trailblazing leadership in developing important public programs like Medicaid, Family Health Plus and Child Health Plus. By broadening eligibility for these programs, we have dramatically reduced the ranks of uninsured. Unfortunately, under the bill approved by the Senate Finance Committee last month, New York and nearly 10 other so-called leader states will be fiscally punished for their efforts.
The Senate bill would provide new federal money only for states whose eligibility for public coverage programs currently falls below the new federal minimum -- an outcome that the New York state health department estimates will result in an additional $900 million in annual costs for New York State. In this area, the House bill is better and rewards all states -- regardless of previous coverage levels -- for expanding public insurance coverage.
The Senate Finance bill also could better address the needs of high cost of living states, like New York. This bill provides insurance premium subsidies based on the federal poverty level, which does not recognize the high cost of living -- and of health insurance -- in New York State. The value of the proposed insurance premium subsidies will not go very far in New York’s high-cost health insurance market.
A new affordability exemption, included in recognition of the unfair burden that high health insurance premiums might place on lower-income families, would allow many New Yorkers to opt out of the insurance mandate. Some estimates indicate that as many as 500,000 New Yorkers might accept this exemption and remain uninsured. While nearly 2 million would still get coverage, I believe that we can, and must, offer better subsidies to reflect the realities of high cost states such as New York.
New York has some of the strongest consumer protections in the nation. Our state has guaranteed open enrollment and renewal and significant limitations are placed on insurers regarding exclusions for pre-existing conditions. We are the only state in the country that has a pure community rating model, meaning that health insurance rates are the same for everyone, regardless of age or health status. This protects our most vulnerable residents and ensures that the cost of illness and disability is shared fairly across our state.
New York also has strong external review and appeals protections, which encourage expeditious resolution of claims disputes. The Senate Finance bill would curb the worst insurance abuses and provide new national protections that would act as a national floor, but not a ceiling for insurance regulation. But insurers still will be able to charge higher prices for older people and people who smoke. New York will maintain its superior rules, though some are concerned that the existence of a federal floor will create pressure on New York to loosen its laws.
Several other provisions of the Senate Finance bill raise red flags for New York State. Its version of health care reform would change one of the ways that we reimburse hospitals that care for people who do not have insurance. This would devastate New York City’s public hospital system, the Health and Hospitals Corp., for which these payments are a critical source of funding.
A new small business tax credit, meant to help small businesses because their cost of insurance is higher than for larger companies, is pegged to wage rates. Hence, New York’s high cost of living and relatively high wages would leave many small businesses ineligible for federal help.
Finally, a tax on high-cost insurance plans, intended to discourage people from buying more health insurance than they need, will harm many New Yorkers more than people in other states. The high cost of health care in the state has led to insurance premiums that are correspondingly high and the relatively high rate of unionization in our state has led to more generous benefits packages for New York workers. As a result, New Yorkers will likely pay considerably higher taxes on their health care.
So where does this leave New York? The good news is that there is still time to improve the Senate bill -- first in the melding with the Senate Health, Education, Labor and Pensions bill, and second when the House bill and the Senate bill are crafted together in conference. In addition, none of the provisions of health care reform begin immediately, which provides New York State an opportunity to think through our plans.
It would be wise for our state to put together a team that includes representation from the executive and legislative branches, as well as relevant stakeholders, to generate, discuss and vet ideas and plans. Bringing providers, consumers, health plans providers and insurers together increases the likelihood of getting it right, and of being sure that key issues are not overlooked. National health reform presents a huge challenge for New York State. It will take all our best efforts to get it right at the federal level and make it right for New York.
Thomas K. Duane, a Democrat, represents 29th Senate District on Manhattan's West Side and parts of the East Side and chairs the Standing Committee on Health.