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 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.
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.
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.
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.
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.
