In response to Cuomo's End Of Aids Policy

Press Release

Focus on keeping a generation of HIV negative youth, negative

New York, New York, December 12, 2014:  

On the heels of World AIDS Day, and in response to Governor Cuomo's End of AIDS Campaign, STARR has put forth a comprehensive plan for ending AIDS in New York. 

First, here is some background on STARR’s leadership and co-authors of this document. Orphaned by AIDS at age 8, Mariah Lopez has worked for over two decades to educate the public about HIV/AIDS. As a transgender woman of color, living in the highest risk margins for contracting HIV, Ms. Lopez has used the tried and true methods of harm reduction to remain negative. Mr. Holley is a community activist and former HIV counselor trained by the state of New York. A transplant from North Carolina, Mr. Holley began his career in health education at a non-profit in Brooklyn, where he worked with Ms. Lopez to educate and equip at-risk youth.

STARR believes that the Governor’s plan relies too heavily on a false sense of security with Pre-Exposure Prophylaxis (PREP), and fails to take into account, cheaper less intrusive methods, such as Post-Exposure Prophylaxis (PEP). The members of STARR also believe that the New York public will not only be more receptive to age-old prevention methods like condoms and testing, but better served by them as well.

Put simply, STARR believes the Governor’s plan will not work, but instead, stands to delay the End of AIDS in New York for at least a generation. The ideas in STARR’s plan are fresh and radical. STARR recognizes the fact that we need a new way of looking at AIDS and how to end it. The actions and policy that the Governor and his advisors say we need to reduce the number of new HIV infections and deaths from AIDS is far from practicality or even rationality. The logic and firsthand experience of the STARR plan is simple and closer to the ground. It’s based on what STARR members have seen work in the community over the past 30 years of this pandemic.

The plan emphasizes empowering young, HIV-negative individuals to form what could be considered a generational ‘shield’ against new infections. By educating the greater public—especially the youngest members—around a new arsenal of weapons that can prevent people from contracting HIV, we can help people police their own actions and stop transmissions before they occur. Using tools that already exist, but are not widely available to the public, such as Post Exposure Prophylaxis (PEP), we can create a barrier to transmission that is flexible and forgiving, making it a much more appealing and realistic option. Also, this new plan encourages HIV negative individuals to get involved in developing a vaccine against HIV, by participating, in some way, shape, or form, in vaccine research or recruitment.

One of the largest obstacles facing scientists, who are trying to develop a viable vaccine against HIV, is the lack of willing, healthy participants in vaccine trial studies. As a participant in a vaccine trial, and a Community Board Member of the HIV Trials Network operating out of Columbia University (HVTN), Mariah and other prevention specialists believe that New York should be leading the country in public participation in biomedical research. Everyone can and should, play a role in ending AIDS.

This new strategy focuses on and promotes PEP over PREP. It presents an opportunity to use the latest advances in rapid HIV Testing, coupled with breakthroughs in HIV pharmaceuticals, to effectively reach HIV negative individual’s as much as positive ones, in the fight against AIDS. 

Over the last decade, an increasing amount of resources have been cut from prevention programs; all while treatment programs and models expand. Currently, the majority of public resources go to those individuals who are already infected with HIV, as opposed to those who find themselves in the highest risk margins for contracting and spreading the virus. The Governor’s plan falls short when it comes to empowering healthy, younger individuals to fight AIDS in the way that a true “End of AIDS” campaign would require. The STARR plan’s goal is to achieve NO MORE NEW CASES OF HIV INFECTION.

What the Governor and others fail to grasp is that, it is far easier to educate, and essentially inoculate young people with information and direct links to PEP, than it is to pump virtually everyone in New York at high risk for HIV, with potent, toxic antiviral drugs. Treating everyone with HIV medication in the hopes that community viral load will be reduced, resulting in less infections, is dangerous and unlikely. This is bad public health and sketchy science, at best.

PEP is proven, safe, and not nearly as costly as PREP; and every sexually active person deserves to know about it, and deserves to receive it, free of charge, when indicated. Ending AIDS must involve razor sharp programs that stop HIV at the source of infections, at high risk events, not a random ‘buckshot’ approach, that gives healthy people strong drugs, indefinitely.

The idea of stopping HIV before it can infect a person’s fighter T-Cells (an approach never attempted on such a large scale), would connect all New Yorkers to PEP drug cocktails, 24 hours a day. This can be accomplished through a massive HIV testing/PEP initiative. Ironically, a massive testing initiative throughout New York is the first step in the Governor’s plan already.

The second step would focus on HIV negative individuals specifically, by connecting the youngest, highest risk individuals to new intervention models and services, including good old basic sex education, with the twist being the addition of many fascinating new tools and options for HIV negative individuals that were not available to previous generations. The plan is bold, innovative, practical, and economically feasible. The plan is based in science and applies both new and old concepts around HIV prevention.
 

THE PLAN

 STEP ONE- Returning to the Basics of Stopping HIV/AIDS; Testing, Education and Prevention Services, designed to reach a whole new generation of New Yorkers, while making new services and tools available for HIV negative individuals.

NYC must return to the basic principles of HIV prevention and healthier sexual practices. New York Health officials must reintroduce and re-integrate the concept of Harm Reduction, to a new generation of high-risk and at-risk New Yorkers, a majority of whom have yet to be the target of large scale 'Testing and Prevention' campaigns that were popular in the 1990’s.

For over a decade, local, State, and Federal budgets have placed mind blowing amounts of public dollars into treating those who are infected, at the cost of implementing more prevention tactics, like peer and community based HIV prevention programs or, specifically designed prevention campaigns for high-risk groups, such as young MSM’s, Trans-Women, male and female sex-workers, and I.V drug users.

For years, disproportionate amounts of HIV/AIDS funds have been used for public housing, medicine, and other medical expenses for those who have HIV. In many cases, this money may also be effective when used to connect people and communities to affordable, scientifically proven, HIV prevention methods, like condoms, education, interventions, and clean needles for I.V drug users. The current model for Ending AIDS is outdated and is no longer effective.

There is a decades-old funding deficit in New York around HIV/AIDS services for those who are HIV negative. The 'Treatment’ versus ‘Prevention' dilemma seems, at least in part, to be caused by both fiscal conservatism by the government, (which trickled down during the Bush administration) as well as the fact that, at any given moment, the majority of the most well-known and influential AIDS activists to date, who are at the helm of HIVAIDS advocacy, are themselves HIV Positive.

Individuals, who are already infected, are speaking for the vast majority of New Yorkers, who are not infected with HIV. Many focusing on treatment over prevention, when there are limited funds and resources to begin with. This way of thinking is both counterproductive, and unfair.

HIV positive people have been fighting for decades for those who are HIV negative. Older, (mostly) white, gay men, are leading the public policy discussion around preventing HIV, on behalf of communities of color, and women. From the 1980's through today, it seems that the ears of elected officials and private funders are more readily available (and their check books more accessible), to those who are already HIV positive, not those who may become infected. Even New York’s public assistance system gives preferential treatment to the HIV positive, over the HIV negative. When funds for HIV and AIDS services are already bare-bones, how can we dismiss the needs of someone who is at high risk, but could stay negative with timely assistance?

It is impossible, within the current system of healthcare in New York and with limited funding for HIV services to begin with, for this paradigm of Treatment versus Prevention, NOT to pit communities and generations against one another when fighting behind closed doors for funding. With numbers of new HIV infections steadily rising amongst Black and Latino MSMs, Transgender women, and seniors of all races, it is difficult to imagine that race and gender discrimination are not to blame for the disparity in resources, new infections, or a broken system.

HIV negative New Yorkers depend on effective prevention programs in order to stay informed about HIV, and remain HIV Negative. It is no wonder that, with no community representation on a public policy level, communities of color, especially those who are already on the margins, such as Trans women and young MSM’s of color, are experiencing rising numbers of new infections. Some may grumble at this assertion, but it is true. The attention that the world gave dying AIDS patients in the beginning still has its consequences today. The public seems to focus on plugging the leak, and not fixing the dam.

In New York, on most days, one stands a better chance of getting housing and other emergency social services if one is HIV Positive. This is a fact; no one can deny this. There are simply more services for those who are HIV Positive, than those who are not. Indeed, evidence of this emphasis on services for those who are infected with the virus is evident from private programs like "God’s Love We Deliver", to taxpayer subsidized social service agencies, such as HASA and Housing Works in NYC.

Even Governor Cuomo's new deal with pharmaceutical giant Gilead (to cut the cost of HIV drugs in New York State, for HIV positive people on Medicaid) seems to favor treatment over prevention.

What’s truly telling is that, the same drug Cuomo arranged a huge price slash for, called Truvada, can also be used to prevent HIV as an after exposure intervention (PEP). However, using Truvada as PEP, versus PREP, does not sell as many pills for Gilead in New York via Medicaid. PREP is more profitable for pharmaceutical companies than PEP. The Governor failed to negotiate the same price slash for Truvada as PEP.

Besides leaving thousands of people out of the budget, treatment versus prevention models defy modern epidemiology, as well as cost the tax payer tens of millions, collectively, in medical and housing expenses for those who contract HIV, instead of preventing HIV from spreading. The price of treating HIV, as opposed to preventing it, is simply astronomical. The two approaches cannot even be compared financially, side by side. PEP could cost up to $2,000; where PREP could cost $44,000 for a two year supply (roughly 2k monthly for anti-viral meds, multiplied by 24).

The general public wants to know that health officials and scientists are working to contain the spread of HIV, and to eventually develop a vaccine, micro-biocides and other new methods of helping HIV Negative individuals, remain healthy and free of HIV. The public should not have to foot the $2,000 a month bill for healthy adults, when there is an alternative that has been used effectively for over 20 years.

A new approach must be explored.

STEP TWO- New “Tools", Same FIGHT! Science meets Social Media.

Social-media provides an exciting new avenue to spread older messages (that were once deemed ineffective, because they didn't catch on) to new, tech-savvy audiences, including new immigrants, senior citizens, and GLBTQ youth, to name a few.

There isn't anyone who could argue with a straight face, that there has been a genuine attempt by either government health Officials, or the private sector in the last ten years, to upgrade programs and campaigns around Safe Sex and prevention, in a way that would allow these messages to reach new audiences in ways never possible before, via social media and the internet.

Campaigns like "Wrap it Up" and "Know Your Status", combined with new medical tools that weren't widely available in the 1990's, could spell a change in the way traditional HIV Prevention Outreach is conducted. Older messages could be tweaked and updated in order to take advantage of new scientific advances that will aid in staying HIV free (rapid HIV-testing and 'PEP/PREP’). Some of the most effective tools for preventing HIV did not exist the way they do now the last time any statewide initiative to combat HIV/AIDS was put into effect.

By using new technology like social media and the ubiquitous smart phone, to get information to the public about lifesaving information about PEP/PREP and affordable or free health care, activists and health officials can reach individuals and communities like never before. Safe sex messages that took years to catch on previously, can become online tutorials that will be seen by potentially millions of people, within minutes. Simple messages such as “Get Tested”, “How to use a Condom”, and “What to do if you slip up” can become hash tags in an instant.

This generation of New Yorkers is more technically inclined, and medically competent, than ever before. Google, Facebook and Instagram can be tools of peer to peer education, and grand-scale public health campaigns. Returning to the basics of sexual health, while making the messages easily accessible through electronic and cyber based peer education, is a must if New York is to address AIDS in this new digital age.

The current generation lacks the fundamentals of basic sex education and sexual health. Seemingly simple information can mean the difference between becoming infected with HIV, and not becoming infected (“Stick to the shaft”; “Swallow don’t spit”; and “You have 72 hours to get PEP if the condom breaks”).

 The internet must play a key role in sharing crucial lifesaving information around HIV/AIDS.


STEP THREE- PEP, Not PREP must be made widely available in order to end AIDS.

PEP has some clear and distinct advantages over "PREP", including its costs (cost to the tax payers, in the case of those who receive Medicaid), and actual health benefits over PREP. Used properly, PEP is completely safe and should not result in any long-term adverse effects. The same cannot be said about PREP. As opposed to PREP, PEP is:

·         Easier for the general public to understand and manage than PREP

·         PEP is less toxic to the body than PREP

·         PEP is proven to work, since at least the 1980’s.

·         At any given moment, there are thousands of people living in, or visiting New York, who have had a risky sexual encounter, or, who have possibly shared a needle in the past 72 hours, and these people (occasional drug users, tattoo recipients, and those who inject hormones or steroids outside of a doctor’s supervision) would be prime candidate for PEP.

PREP, on the other hand, is full of questions and concerns. PREP isn't exactly 'Healthy' for anyone, and can potentially harm the kidneys, liver, stomach, and gastrointestinal tract. Antiviral HIV medication is somewhat toxic to the human body, whether you're HIV positive or not. It is widely accepted among experts that such medications can become harmful to the liver, kidneys, and other organs over time. Using these types of medications on a long term basis—especially in  HIV negative individuals, as a strategy to prevent HIV—is not the most effective off-label use of these powerful drug cocktails. Instead, limited use of these drugs (as with PEP), along with intensive counseling for individuals that find themselves exposed, is much safer for public consumption. PREP must be held back until it is studied further. 

Additionally, PREP requires months of pre-counseling by the recipient’s primary physician, while PEP can be used in emergencies, with no other strict requirements besides being HIV negative.

PEP must be utilized far more than it is being used today, with emphasis on teaching the general public new tools and behaviors, in order to remain HIV Negative. Besides, an after-exposure approach can be understood as a general concept to both men and women, because of the female contraceptive called Plan B, One Step pregnancy prevention, which became widely available years ago. The Plan B, One Step pregnancy prevention pill provides an excellent foundation on which to engage the public in interventions that are both preventive, but also reactive such as the Plan B pill. An example of this new approach could be “Get Tested, Use Protection, and if all else fails…there’s PEP.” As the official website for the Plan B pill boasts “Accidents do happen”. The same is true for condom breaches and HIV transmission. PEP serves as a last line in defense, in the war to truly ‘End’ AIDS.

An “After Exposure” approach to preventing HIV could even change the way the public views HIV transmission.

An 'After Exposure' approach would require the least amount of potentially toxic drugs to HIV Negative New Yorkers, while encouraging HIV Negative individuals to stay in contact with experts. Readily available PEP (through avenues such as “PEP Centers”) also offers and teaches Harm Reduction to the public and high risk groups on a massive scale, without the long term health impact on HIV Negative NYS residents that PREP could have. A PEP-centric approach to reducing new infections would also be significantly cheaper than the Governors current plan.

The price of treating an individual with PEP is under $2,000, whereas, treating an individual with PREP—which would conceivably last for years—could cost individuals or insurance companies, tens of thousands of dollars per person, annually.

PREP is also unproven to work long term, and could cost New York State Medicaid millions of dollars, with no guarantee that in ten years, there won’t be some massive outbreak, of a Truvada resistant strain of HIV, simply because someone was given PREP who was in fact a carrier of HIV.

Truvada resistant HIV is a real and serious concern with using PREP. Especially if one is already infected, or becomes infected before the medication is accumulated within the body. HIV reservoirs do exist. They are not myths. This is not fear mongering or science fiction.

The so called “Mississippi Baby” is a prime example that, even with state of the art testing, someone can be infected with HIV despite a negative test result. The risk of HIV developing resistance to Truvada, if in fact someone is infected, is far lower if the regimen is shorter, such as PEP, which only last 30 days. PREP regimens are usually indefinite.

New York should invest in proven science and not experimental concepts when it comes to human life.  

STEP FOUR- New York must change the eligibility requirements for receiving “HIV Specific” services in NYC and State.

New York must design and implement significantly more services for vulnerable, high-risk, HIV Negative New Yorkers. New York must lead the nation in social services for at-risk, HIV Negative individuals.

Housing and other essential social services, must be provided specifically to those who are at the highest risk for contracting HIV, yet are still HIV negative, and these services must be administered BEFORE individuals become infected.

High risk individuals, such as GLBTQ youth of color, MSM’s including Trans’ women, and other groups, who experience higher than normal rates of homelessness, incarceration, and untreated mental illness must be targeted specifically with new resource around housing and other essential human services. Depression, substance abuse, and domestic violence are also contributing factors that exacerbate an individual’s risk for getting HIV. Without specific preventive services, many individuals fall through the cracks, only to reappear once infected and symptomatic with HIV/AIDS. This current model—of turning HIV negative people away from places like NYC’s HASA or Housing works—is cruel, outdated, ineffective and costly.

In New York,  most community groups and public programs that were created in the 1990’s to address HIV/AIDS, are now unable to truly service everyone who could benefit from HIV/AIDS specific social services, because most of these groups and agencies were designed to service, almost exclusively, HIV positive individual or those with AIDS. Virtually no quality programs exist exclusively for high risk HIV negative individuals who are homeless, mentally ill, engaging in survival sex, or addicted to drugs. Most high risk individuals are referred to the general homeless shelters in NYC. These HRA run shelters are not equipped to adequately serve special needs groups such Transgender individuals, or victims of community or domestic violence.

Every day in New York, a young or homeless HIV negative New Yorker is turned away from an existing nonprofit, or governmental assistance program, simply because they are not HIV positive. This leaves a gaping hole in our system that must be addressed. 

New York must begin to reverse its old policy of not providing the same services, to HIV negative individuals, that it provides to HIV Positive people, or those living with AIDS:

Emergency Housing for youth and young adults (especially those leaving foster care in New York); Transitional housing for high risk individuals and families of all ages; Case management, and other essential social services that seem so readily available once someone becomes infected with HIV, must also be used to prevent infection!

Existing CBO’s must be created and funded specifically to provide HIV negative individuals with programming and services. 

Both private and government funded agencies known for servicing  those who are HIV positive, must recognize that ending AIDS starts with people, most of whom are not infected with HIV…yet!

Harm reduction, and what we have learned about AIDS and homelessness over the last three decades, must inform these new policies around who gets funding and resources around HIV/AIDS.

We must make housing, becomes a tool of End AIDS, just as housing became a tool of treatment and saving lives. HIV negative New Yorkers must be provided with housing where it is indicated that such housing is likely to decrease the risk of HIV infection in someone—or in an entire family.

This way of thinking (housing “first”) is inspired by Harm Reduction, which is an invaluable philosophy within many public health programs and policies. Ironically, the entire HIV/AIDS social services system in NYC, is actually based on Harm Reduction (whether people realize it or not).

In New York City HASA (HIV AIDS Service Administration) was designed applying the principles of Harm Reduction. HASA places safe, healthy housing and stability of its clients, above all else. Housing is one of the first, most basic services provided to someone who is HIV infected in NYC. Using this same methodology, housing can be used as a measure of  preventing HIV, by engaging those who are housed,  in intensive programs meant to supplement information and resources to remain negative.

Housing is indeed a powerful incentive. Today, thousands of vulnerable New Yorkers above age 24 cannot access adequate emergency housing until it’s too late. An HIV diagnosis means you will definitely get a bed somewhere in NYC, but at what cost? Why does it make sense to provide quality emergency housing to those who have AIDS, but not to those at risk as well? The Governor and other officials must radically re-examine how funding new housing programs for the highest risk New Yorkers, might improve the chances of reaching the most at-risk communities, before it’s too late. Considering that there is no end to AIDS or HASA in sight, the state and elected officials must make housing, as a form of HIV prevention, a priority.

Lastly, although terrifying to conceive, New Yorkers have been known to become infected just to receive Emergency Housing and other services from HASA and New York non-profits. It is a dirty little secret of New York, but it’s true. Individuals, who are familiar with the system, realize that in NYC, social services for people with HIV/AIDS are far superior to services for non-HIV positive individuals. People have even been known to flock to New York from outside the state—and even from other countries—in order to sign up for HASA and other programs and services.

For a person who is homeless, or GLBTQ, from outside of New York, contracting HIV seems a small price to pay, for the guarantee of lifelong housing, medical care, and other services. This fact is cringe worthy, but it’s true. The system seems to be lopsided in favor of those who are HIV positive.

Another unintended consequence of the current New York social services system in New York is that it seems to scare HIV negative people away from receiving or seeking services like housing referrals, free testing, and even condoms. The messages touted by nonprofits, of being “pro-HIV positive” often works as a barrier against those who are sure of their negative status, yet, still need basic services. These messages and attitudes towards HIV negative individuals leave one with the impression that only HIV positive people are welcome in these spaces, or deserving of “free” services.

The reason that client retention across New York State nonprofits trying to end AIDS is so low, has to do in part with the stigma that is associated with receiving services at HIV/AIDS service agencies. Since most of the clients are HIV positive or have AIDS, people who are negative, yet could in fact benefit from condoms, counseling and other services,  tend to stay away from these same agencies for fear of being seen as having HIV, or fear that they aren’t entitled to assistance.

This stigma will take years to reverse.  However, it is possible to reverse the belief that all HIV/AIDS service agencies only serve those with HIV. Simply by providing care, housing and other resources to HIV negative individuals, New York can begin to chip away from the stigma that impacts us all.

Until we seriously consider how having HIV/AIDS may be the only way to receive quality social services for certain groups of individuals in New York, and how the current system actually incentivizes having HIV, we will not end AIDS in the Empire State.

This plan, if examined and applied, will yield results almost immediately. Everyone in New York will get tested, and those who are HIV negative, will have an option which, currently, millions of people don’t know about at all, are do not fully understand—PEP.

 A new generation deserves the chance to try old ideas, in new ways that are relevant and effective in this new digital age. The ideas in this plan aren’t new, but are tried and tested. They work! HIV Negative individuals (which is to say the majority of New York residents) deserve to have a plan that empowers everyone. The current plan to End AIDS in New York fails to do this. Communities of color and women especially, deserve to know all the options available to stay safe and healthy in any situation. PEP is that option.