When will AIDS be over? It's a question that I have often heard from my patients. Usually, they're asking when there will be a cure or vaccine -- and the answer is, unfortunately, not for some time. Vaccine trials are slowly moving forward and cure research is just now being seriously discussed for the first time in years.
But most people are unaware that we have the tools we need to end the AIDS epidemic right now. By "ending the epidemic," we mean lowering the number of new infections until it drops so low that the epidemic peters out. HIV will still be around, and there will still be new infections, but far below the epidemic numbers we are seeing today. Eventually, the numbers could get so low that a new infection would be a rare occurrence. And all of this could be possible in just a few years -- perhaps as early as 2025.
In June of 2014, New York's Governor Andrew Cuomo committed to the NYS Plan to End AIDS. He is to be applauded for putting New York forward as the first state to commit to ending the epidemic by greatly decreasing new cases of HIV.
His announcement followed a proposal put forth in August of 2013 by a coalition of community groups including Treatment Action Group, Housing Works, and ACRIA. They submitted a working paper to New York State's Department of Health, describing five key elements of a plan to end AIDS in the state.
- Adopt 21st century surveillance strategies.
- Reduce new infections through evidence-based prevention.
- Maximize the number of people with HIV able to suppress their viral load.
- Support health, prevention, and retention in care for all New Yorkers with HIV.
- Commit political leaders and all communities to the plan.
In response, Governor Cuomo issued the following statement:
Thirty years ago, New York was the epicenter of the AIDS crisis -- today I am proud to announce that we are in a position to be the first state in the nation committed to ending this epidemic. New York State has reached an important milestone in controlling the AIDS epidemic, and through this comprehensive strategy, we are decreasing new HIV infections to the point where by 2020, the number of persons living with HIV in New York State will be reduced for the first time.
The announcement highlighted three main goals:
- Identify undiagnosed people with HIV and link them to care.
- Retain people with HIV in care and support them so they can stay on treatment and keep their viral load undetectable. This will keep them healthy and dramatically decrease the chance they will transmit HIV.
- Provide access to high-quality prevention, including PrEP.
Since HIV treatment can now keep people alive even into old age, the decreasing death rate (see graph below) means every new case increases the number of people living with HIV. So, to keep the number of people living with the virus from continuing to rise, the plan is aimed at dramatically reducing the number of new infections.
The plan calls for dramatically altering the "Cascade of Care" in New York. In 2012, it looked like the graph on page 4.
Bending the Curve
To bend the curve of the epidemic, it's been estimated that the proportion of people virally suppressed would have to be over 80%, since being undetectable dramatically lowers the risk of HIV transmission. The plan also looks to use new prevention tools like PrEP (see "A Magic Pill to End AIDS?" in this issue) to lower new HIV transmissions in NYS from their current level of 3,000 per year to 750 by 2020, and to an even lower level by 2025.
The plan offers great hope and makes HIV once again an important public health priority. But phrases like "the end of AIDS" must be met with pause. To have any chance of success, any plan will require major efforts by multiple sectors of society. First, it will require an estimate of the actual costs of the proposal and an increase in funding to meet them. Then, it will require a much higher level of engagement and monitoring of medical institutions to ensure that "routine" HIV testing becomes truly routine. Finally, it will require a scale-up and strengthening of programs offering HIV prevention, care, support, and housing.
We can see this problem among people aged 13-29, who now account for 40% of new cases in NYS and who are mostly young men of color who have sex with men (MSM). Compared with the estimated 15% of HIV-positive adults who don't yet know their status, an estimated 60% of youth with HIV are still unaware they are infected. By failing to scale up targeted and effective prevention programs, we have seen the re-emergence of HIV in the next generation of gay and transgender youth. While there are many reasons for this rise, the bottom line is that HIV will continue to grow if we ignore the need to update and strengthen our approaches.
Alan Whiteside and Michael Strauss perfectly capture why we must take pause. In a recent article entitled "The End of AIDS: Possibility or Pipe Dream?", they state,
We need a new sense of realism and commitment ... The timeline for commitment is far longer than most politicians, strategists, and donor are willing to consider, even in their "long-term" plans.
The Ecosystem of HIV Care
We cannot overemphasize the great effort needed to move people with HIV through the lifelong engagement that has become known as the HIV Cascade of Care. People first need to know they have HIV; then they have to become engaged in regular, continuous HIV care; and finally they must receive and adhere to effective HIV treatment to achieve viral suppression. This is a process, not an event. It requires highly sustained commitment by all actors within what we call the "ecosystem" (or environment) of engagement. The actors and commitments needed are:
- Public health policies and laws that support access to high-quality health care that is integrated and coordinated. But even with strong laws, implementation is not easy. In 2010, New York passed a law stating that all patients in the health system must be offered HIV testing, but this has still not been fully implemented in medical sites throughout our state. It took until 2014 to update the confusing consent requirements for HIV testing. We must be willing to review policies continually and repeatedly to ensure that they meet current needs. (Interestingly, the call for routine screening for hepatitis C has not included a call for the strict consent requirements in place for HIV.)
- A health care delivery system that has the human, technical, and financial resources to meet patients' needs for care and wrap-around supportive services. As described in the article on page 6, these are not luxuries if we want to take full advantage of current HIV medications.
- HIV medical providers who have the skills to communicate with their patients, and who can help them become active participants in their health care. All providers must ensure that HIV testing is routinely offered and that those who test positive are linked to and retained in care. Additionally, HIV care must address all the barriers that patients, especially poor patients, face and that can interfere with their adhering to their meds.
- Patients who are engaged in health care decisions with their providers and who have acquired the self-management skills they need to overcome the challenges chronic illnesses like HIV bring with them. HIV has hit hardest among the most disenfranchised people -- the young, the poor, substance users, and people facing homophobia, transphobia, and racism. To be "successful" as an HIV patient means taking your medicines almost every day -- no easy task for anyone, but much harder if you're homeless or couch-surfing and have no regular routine, no money for transportation to the clinic, or no regular source of food.
Without all actors within the ecosystem working together over time, the environment is vulnerable to new HIV transmissions and to the risk of people with HIV falling out of care and becoming non-adherent. The mathematical models that have inspired the dream of ending the epidemic are based on assumptions and predictions. But models tell us only what is possible. A model is different from a plan, and a plan is different from its implementation. The heavy lift is increasing testing, getting everyone with HIV into treatment, and keeping them on treatment.
Working as an HIV doctor for almost three decades, I have often been asked why people with HIV don't just get into care. Why is it so difficult and complicated, especially with all the great treatments? Why can't we just end the epidemic and get on with solving other public health threats?
The answer, as eloquently noted in a recent editorial in Science, "End of AIDS -- Hype versus Hope", is that:
... the potential of antiretroviral treatment to control the HIV epidemic through a "test and treat" approach faces stark realities ... and gaps in the HIV care continuum limit the potential of such an approach.
These challenges include:
- Health care settings that only slowly scale up and respond to legislation.
- Funding threats to wrap-around services such as substance abuse and mental health treatment, food, transportation, and housing.
- Pervasive stigma (homophobia, transphobia, racism) at the community level that triggers fear, preventing people from seeking testing, care, and treatment.
- Multiple illnesses, such as addiction and mental illness, that require intense levels of care coordination.
The Best of Times
As two people who have been part of the HIV community for a combined 45 years, we can say with great certainty that these are the best of times. After more than 30 years of relentless struggle, much progress has been made. We now have:
- Strong medicines that can keep people alive for a full lifespan and greatly help to reduce the spread of new infections.
- Important new legislation, including:
- The removal of written informed consent for HIV tests, allowing them to be ordered through oral consent or opt-out, like most other medical tests.
- Allowing data collected by the health department to be shared with health care providers to locate people with HIV who have fallen out of care.
- Expanded insurance coverage via the Affordable Care Act for people with pre-existing conditions, as well as for preventive services like HIV testing.
- A 30% cap on the amount of the income of people with HIV that can be spent on rent, keeping them stably housed -- which improves their ability to stay on medication.
- Public-private partnerships -- New York State negotiated price reductions with three drug companies, representing 70% of the HIV market: AbbVie, Bristol-Myers Squibb, and Gilead. This agreement will go a long way to decrease the costs to the state of providing needed medication to all people with HIV.
Though these are the best of times, we need to be thoughtful, decisive, and honest about what it will take to end the epidemic, recognizing that a cure is not on the immediate horizon. Our job as HIV service providers and activists is far from done. Our social environment is a fertile ground for the growth of HIV. Transmission thrives on the convergence of chronic illnesses (mental illness and substance abuse), socioeconomic forces (violence and poverty), and stigma. These are critical barriers to care and substantially limit the effectiveness of "test-and-treat" strategies.
What Will It Take?
We must keep our eyes on the prize of a cure. But until then, the NYS plan holds the potential of preventing new infections and improving the lives of people with HIV. Outside of a cure, we need to:
- Expand HIV testing in emergency rooms, hospitals, and clinics. There is often a lag between new policies and their actual adoption. To ensure that all health care providers offer routine HIV testing and linkage to care, we need more training, technical assistance, and regulatory oversight.
- Provide wrap-around services to lower the barriers to care (mental illness, substance abuse services, etc.). The need for integrated HIV treatment and behavioral health care is evident:
- About 50% of people with HIV have mental health problems that may have arisen independently of HIV infection. These may have predisposed them to HIV infection (through risky behaviors) or could be a consequence of HIV (depression).
- About 9% of all new HIV infections occur among injection drug users, and about 3% among MSM/IDU.
- Untreated mental illness and substance use are among the top predictors of poor adherence to HIV treatment.
- Address poverty and health disparities due to race and sexual orientation. Addressing poverty to reduce new infections is not an option -- it's a necessity. It's almost rhetorical at this point to say that inequality in economic status drives poor health outcomes -- in this case vulnerability to HIV transmission and poor adherence to treatment. The fact is, we have not committed to sweeping, innovative interventions to reduce the economic inequalities that fuel health disparities. The data are alarming. According to a recent CDC study of HIV in urban communities:
- Poverty was a key factor associated with HIV infection among innercity heterosexuals.
- People living below the poverty line were twice as likely to have HIV as people in the same community who lived above the poverty line (2.3% prevalence vs. 1.0%).
- Prevalence for both groups was far higher than the national average (0.45%).
- In the U.S., African-Americans, Latino/as, and Caribbean-Americans (especially MSM and transgender females) account for the highest proportion of new cases.
- Provide PrEP for all, including minors. NYS must ensure that there are no barriers to minors accessing PrEP, such as a requirement for parental consent. The right of minors to access screening and treatment for STIs and reproductive health, such as plan B, must be incorporated into all plans to scale up PrEP.
- Address stigma. Stigma falls to the very bottom of the list in discussions of evidence-based interventions to improve access to care. Except in some advocacy circles, it usually doesn't even make the list. The subject is poorly researched, and there is not one antistigma intervention that has made the CDC's Compendium of Effective Interventions.
What I do know, as an HIV doctor for over 25 years in the Bronx, is that stigma is a barrier to care and an extremely complicated concept to disentangle. It is entrenched in the areas of race, ethnicity, gender, sexual orientation, culture, religion, etc. Ending the AIDS epidemic means we cannot run from this complexity.
We applaud UNAIDS, the International Planned Parenthood Federation, the Global Network of People Living with AIDS, and The International Community of Women Living with HIV/AIDS for taking on stigma by developing the "People Living with HIV Stigma Index." The Index is a tool that measures and detects changing trends in relation to stigma and discrimination and has addressed the issue in over 50 countries so far. For the first time in the history of the epidemic, we are beginning to have the evidence to start developing new messages and programs to appropriately challenge stigma.
New York State must implement its own stigma index. Currently, much of what we know about stigma and discrimination is merely by way of our own experiences. We need evidence. Such an index would nicely complement "test and treat" strategies by providing a deeper understanding of how stigma and discrimination serve as barriers to testing, care, and treatment. Additionally, the findings could be used to engage vulnerable communities in discussions and problem-solving to change community norms regarding stigma.
We conclude with two challenges for the leadership of NY and its health care institutions:
- Dig deep and have realistic discussions as to what it will really take to end the AIDS epidemic in NYS.
- Develop and implement a plan that focuses on the five strategies above so we can make real progress toward 2020.
This challenge can be met by holding each other accountable and by ensuring that every lever is pulled. As President Obama said when introducing the National HIV/AIDS Strategy, "So the question is not whether we know what to do, but whether we will do it."
Donna Futterman is director of the Adolescent AIDS Program at Montefiore Hospital in the Bronx. Terri Jackson is a senior vice president at Rabin Martin.