These remarks were delivered by Housing Works President & CEO Charles King at the New York State Ending the Epidemic Summit on December 7, 2016
Four years ago when Treatment Action Group and Housing Works convened the first summit on Ending the New York Epidemic, many thought it was premature, counter-productive, or just plain impossible. But we gathered support, secured a commitment from Governor Cuomo, and are well on our way.
The 2015 surveillance data from New York State and New York City demonstrates that we are clearly on track and gearing up for serious acceleration as we drive up rates of viral suppression, drive up PrEP and PEP usage, and drive down new infections. We started small in 2014, with a $5 million commitment from New York State, and first steps towards repurposing State and City contract funding to focus on ETE goals. We also won insurance coverage for transgender-specific health services and a change in the testing law. By 2015 we had an ETE Blueprint, $15 million in ETE funding from New York State, and $6.6 million from the New York City Council. We also achieved legislative and regulatory changes, including transgender human rights, limited legalization of syringe possession, a legal prohibition on use of condom possession as evidence for misdemeanors, and giving medical providers access to surveillance data for purposes of retention in care and viral suppression.
Then came 2016. Mayor Bill De Blasio came on board to provide $23 million in additional annual ETE funding in New York City. The State legislature passed the Governor’s ETE program bill, which includes true opt-out routine HIV testing that includes adults over the age of 64, allows nurses to screen for STD’s, permits pharmacists to dispense 7-day starter kits for Post Exposure Prophylaxis, and expands HIV research capacity. On World AIDS Day 2015, Mayor De Blasio first publically proposed expanding HASA HIV services and benefits in New York City to include all income-eligible residents living with HIV infection. The legislature refused to act on this proposal. So last June Governor Cuomo took advantage of the existing legal structure to achieve the expansion by modify regulations, and made New York City the first jurisdiction in the world to guarantee housing as HIV care for all homeless or unstably housed City residents living with HIV. In the three months since this change went into effect on August 29th of this year, over 1,000 newly eligible low income City residents have begun receiving housing supports and enhanced nutritional and transportation assistance as critical enablers of effective ARV treatment.
Everyone asks, “what about the money?” Well, not only has all existing HIV funding been repurposed to support the ETE Blueprint, but it you take into account the incremental State ETE funding increases, the additional City dollars, and the cost of HASA for All, New York is now investing some $140 million in new money each year on Ending the Epidemic. As one way to ensure that the necessary ETE funding continues to grow, New York State has filed a Medicaid waiver amendment, which, if approved by CMS, will provide an additional $45 million a year in matching funds for Ending the Epidemic investments!
There are other important new developments in the works. Last week the Governor took action to provide that by early next year, minors will have the right to consent to HIV treatment and prevention, including PrEP and PEP, without parental consent, and to give care coordination entities access to State and City HIV surveillance data for purposes of supporting retention in care and viral suppression! And the City and State will be rolling out sentinel event systems in the coming year to achieve two newly stated ETE goals – getting to zero HIV transmission through injection drug use, and, can you imagine, zero AIDS mortality by 2020!
Then there is viral suppression reportingThe Governor announced a broad initiative last week on World AIDS Day. The reporting requirement will apply to Health Home, to OASAS and OMH licensed programs, and to supportive housing providers all across the State.
Our deliberate efforts to take responsibility for viral suppression for every person known to be HIV-positive is what will truly lead us to the end of the epidemic. We can and must get to a sustained 95% rate of viral suppression among diagnosed New Yorkers if we are to achieve dramatically reduced transmission, and that other key indicator, zero AIDS mortality.I can tell you that in Housing Works’ housing programs, we have written support for viral suppression into every job description including the janitor. You may laugh, but in supportive housing, sometimes the only person a resident will speak with is the janitor. So during those times it’s the janitor who knocks on the door and asks that angry tenant if he or she has taken their ARV’s today. And because of that, our housing programs are now consistently scoring above 90% viral suppression, with some of them achieving 95 and even 100% viral suppression! We can do this if we are willing to own it and work together to make it happen!
Speaking of housing, we aren’t done with our advocacy. We are fighting for at least $20 million this year to support a rental assistance pilot for people living with HIV outside of New York City. We all need to be a part of that effort. If you live in Buffalo, Rochester, Syracuse, Albany, Westchester or Long Island, you need to be talking with your legislators and the Governors’ office right now to let them know you feel left out by what was done for low-income people with HIV in New York City while you got not one dime in new housing money.
We can’t rest on our laurels in New York City either. Right now we need HASA to reach out to every homeless person living with HIV in the City shelter system to get him or her out of shelter and into HIV housing and services, and we must enable HASA to track and take responsibility for viral load suppression.To support this we are proposing a couple of demonstration projects. One would focus on people living in supportive house, to help them stabilize and achieve durable viral suppression, and then incentivize them to move into housing in the community in order to free up supportive units for other people who desperately need them. Another demonstration will focus of folk whose lives remain chaotic, who have serious behavioral health conditions and need much more support to achieve stability and viral suppression. Using enhanced HASA teams integrated with a community care team, we hope to prioritize these folk for supportive housing and engage them in the care that they need. Imagine that, HASA and community clinical and non-clinical providers, with client consent to share information freely, working together to provide integrated services, weaving a web so strong and flexible that no one will ever fall out of care.
We also need greater collaboration to do more on the prevention front. AIDS service providers and LGBT health and service providers need to embrace each other as one seamless health and wellness system, that, to quote Demetre, is “HIV status neutral.” We should be fighting together this year for at least $3.5 million in new money for LGBT health and services that are not directly Ending the Epidemic funding. LGBT-specific housing, social services and vocational training for low income members of our communities are essential elements of prevention. And LGBT programs that are not HIV-specific will often be much better positioned to introduce MSM and transgender folk to PrEP. They have already demonstrated that they are caring for the whole person and offering hope, exactly what is needed to make a PrEP conversation viable. We need high quality LGBT health and wellness services all over this state.
We also need to ensure that our harm reduction organizations are fully integrated into our HIV treatment and prevention activities. I was very surprised when I had a conversation with a leader in the harm reduction community about PrEP. “We don’t feel like our people need PrEP. We’ve already ended the AIDS epidemic for drug users.” Well, we are really close to zero for transmission through shared works, but people who inject drugs also have sex. And many, especially women, are at high risk of sexual transmission, particularly those for whom transactional sex is part of their lives. Meanwhile, many older drug users are long-term survivors of HIV, who deserve to be able to live their lives well, including sustained viral suppression. We need to build up our drug user health programs all over the State, including implementation of Safe Injection Facilities, expanding our hugely successful drug user hubs, and working with OASAS to incorporate harm reduction, PrEP and viral suppression into the programs it oversees.
Speaking of people who inject drugs, let’s note that the HIV epidemic does not stand in isolation from other epidemics. Tobacco is killing our communities – smoking is the leading cause of death now for people who are HIV-positive, it disproportionately impacts the HIV negative LGBT community and it all too often becomes the substitute addiction for people seeking recovery from drug use. Hepatitis C is the second leading cause of death for people with HIV, and is a growing epidemic in our State that already impacts more than double the number of people living with HIV, despite the fact that we now have an effective cure. Syphilis is a leading predictor of HIV infection among men who have sex with men. And if a woman has gonorrhea, there is a good chance she should be taking PrEP. And we know how to address the opioid epidemic – harm reduction is not just about ending AIDS.
That is why today I am inviting all of us to expand the Ending the Epidemic umbrella. We need to make smoking reduction and cessation as much a priority as viral suppression. We are already leading the way in ending AIDS. Let’s also lead the way to eliminate Hep C in New York State. Let’s take the lead in ending the epidemic of bacterial STI’s with a special emphasis on syphilis. Let’s tackle the opioid epidemic with real solutions. We have built an amazing HIV care infrastructure here in New York State. As we move toward ending the AIDS epidemic we need to flex our collective muscle, take all that we have learned, join with LGBT organizations and drug treatment programs all over this great State, and work to end all of these overlapping epidemics. In doing so, we will also lead the way in reversing the dramatic disparities in health and wellbeing experience by the people for whom we care.
Finally, many of you have asked me how Trump’s election and rightwing control of Congress is going to impact our plan to End the Epidemic. Well, let me be frank. I don’t have a lot of concern about what is going to happen here in New York. We will surely face challenges and will have to fight hard as a part of larger social justice coalitions. But Governor Cuomo has committed to protecting New York’s health care reform and Ending the NYS AIDS Epidemic by 2020 – no matter what happens in Washington, DC. So my fear is not for New York. It is for the rest of our land and the rest of our globe. People all over the world have been looking to New York as a model to emulate. Even in red states hostile to the Affordable Care Act – places like Fulton County Georgia, Miami County, Houston and Dallas, advocates and public health workers have been working hard to replicate our ETE efforts with little or no support from their state governments. The same is true in places like Lusaka, Kiev and Port-au-Prince. We need to be fighting in Washington. Not so much for ourselves, but for all of these folk. And we have a special obligation to follow through on what we have started here. In the face of Trump-sanctioned racism, sexism, homophobia, transphobia, Islamophobia and an irrational loathing toward immigrants, we need to be a shining beacon. We need to hold up the light and show the world what can be accomplished when we join together as one people seeking wholeness for everyone.
