Published in the Huffington Post on July 18, 2016
In July 1981—35 years ago this month—The New York Times ran a now infamous headline: “Rare Cancer Seen in 41 Homosexuals.” The story also reported, “The cause of the outbreak is unknown, and there is as yet no evidence of contagion.” It was the first news article about a mysterious new disease that came to be the HIV/AIDS epidemic.
No one knew the magnitude of what was coming. From 1981 to 2013, an estimated 1,194,039 people in the United States had been diagnosed with AIDS. Of those, 658,507 have died. Today, more than 1.2 million people in the United States are living with HIV infection; it is estimated that almost 1 in 8 don’t know they are infected.
This is a disease that’s close to home: nearly 1 in 10 Americans newly infected with HIV live in New York State. At the peak of the epidemic in 1993, New York had 14,000 new HIV diagnoses annually; by 2001, that number was 6,700. Our State has long been the epicenter, but Governor Cuomo has made New York the first State in the nation to commit to ending the AIDS epidemic. The recommendations of a special task force appointed by Cuomo were accepted in 2015 and form the basis of the State’s blueprint for achieving this goal.
After so many years of death, suffering, and activism, it is astonishing to consider that New York is even talking about this, much less coming close to possibly doing it. By ending the epidemic, I don’t mean that either a cure or vaccine will exist. Vaccine trials continue to creep along. Research into a cure has only recently been reinvigorated after years of neglect. Ending the epidemic means that new infections become so rare that the epidemic essentially peters out. Technically, it means that the number of new HIV diagnoses decreases to less than 750 per year.
How are we going to get there? The plan has three main priorities:
- Identify people with HIV who remain undiagnosed and link them to health care;
- Facilitate access to high-quality prevention including pre-exposure prophylaxis (PrEP) to protect against new HIV infections among those at highest risk; and
- Connect HIV-positive New Yorkers to therapies that maximize viral suppression to keep them healthy and lower the risk of transmission.
All three of these planks are crucial. Of course, diagnosis is the critical first step and having access to proper health care is essential for people with HIV. The availability of PrEP represents a huge scientific breakthrough with enormous potential to stop the epidemic, but more work needs to be done to reduce the stigma of PrEP among those at high risk of HIV. (Of course, another challenge is that PrEP doesn’t prevent other sexually transmitted infections; it should always be used with condoms). And antiretroviral medication to suppress HIV in the blood to undetectable levels—improving the health of the HIV-positive person and making it nearly impossible to transmit the disease to others—is now a widely available standard of care.
But living with and preventing HIV is about more than just having access to medication. Life is complicated, and many New Yorkers find it difficult to adhere to antiretroviral treatment for a range of reasons: behavioral health and substance use issues, a lack of comprehensive health care services, unemployment, homelessness, and food insecurity, to name a few. Overcoming those barriers is an essential piece of ending the AIDS epidemic and reducing the human and financial costs of the disease.
One successful model for doing so in New York City is the Undetectables program, pioneered by Housing Works. The program uses compelling comic book stories to engage and excite potential clients to enroll in the program, which includes access to medication and adherence tools including support groups, behavioral health services, and financial incentives.
The Undetectables has been shown to be extremely effective—with more than 80% of participants achieving viral suppression, much higher than the rate of all New Yorkers known to be living with HIV. Participation in the program nearly doubled one’s likelihood of achieving viral suppression. In collaboration with the New York City Department of Health and Mental Hygiene and Amida Care and with funding from the New York State Health Foundation, Housing Works is forming a consortium to refine and spread the model. They are developing and sharing educational materials and tools to help others implement the Undetectables program.
One promising avenue for spreading and paying for the model is New York’s Delivery System Reform Incentive Payment (DSRIP) program and other sources; Housing Works and its partners are providing technical assistance and training to Performing Provider Systems (PPSs) throughout New York City and encouraging them to adopt the Undetectables model. And they are working to raise awareness through a citywide social marketing campaign.
These types of innovative programs and partnerships are one reason that New York is ahead of the curve. It is also why we are making measurable progress toward ending the epidemic. Data just released by New York State show that the number of new HIV diagnoses fell to 2,481 in 2014. Data also reveal that 68% of people who know they have HIV had achieved viral suppression in 2014, up from 63% the year before. The once unimaginable goal of eradicating AIDS is now within our grasp, thanks to scientific advances and—perhaps more importantly—the political will and resources to put a stop to the disease.
Now that we’re making progress, we also need to approach ending the epidemic with realism and recommitment. Prevention and education programs, especially those that take account of the realities of life for already marginalized people, need to continue. Medical providers need to be monitored and held accountable so that routine HIV testing is genuinely routine practice. We need to scale up programs like the Undetectables to reach more people. And we need to be realistic about funding. New York State has committed substantial money for PrEP, awareness campaigns, increased housing support for people with HIV/AIDS, and doubled funding for the State’s AIDS Institute. Yet, much of the blueprint is unfunded and advocates say much more is needed.
After 35 painful years, the end of AIDS is within our grasp. The very words are audacious. What was once unthinkable could actually happen by the end of this decade or soon thereafter. At the end of the 1989 film Longtime Companion, friends stroll along the beach and imagine aloud the end of AIDS, as friends they’ve lost come running toward them. One says it will be just like the end of World War II. We’ve all had enough fighting and dying. Let’s end this.