“On the Foundation Freeway: Entering and Exiting Priority Areas with Caution”

Published in the GrantWatch section of Health Affairs Blog on July 27, 2016.

All funders, no matter their size, have big dreams and limited resources. I have yet to meet grantmakers—even the largest ones—that think they have sufficient money to tackle the myriad challenges that exist.

This is certainly true for the New York Health Foundation (NYHealth). With an endowment of close to $300 million, we are usually considered a mid-size foundation. Yet, these dollars pale in comparison with the health and health care needs of a large and diverse state like New York. The state is home to more than 19 million people, including large populations of low-income and elderly people, immigrants, non-English speakers and undocumented people, homeless individuals, and people with complex and special needs. Our residents are spread over sixty-two counties, including the densest urban environments and intensely rural areas. When you combine a burning desire to make a real impact with the realities of our large state and the relatively modest size of this foundation, the only viable path is to focus our efforts. Our board and staff agreed from our inception that we could not be all things to all people and have the kind of deep impact we sought. We agreed to be a strategic organization that would practice discipline in the pursuit of clearly defined goals, strategies, and measures of progress. Therefore, we select a limited number of priority areas to which we make multiyear, multimillion-dollar commitments. For each area, we aspire to move the needle in a substantial and measurable way. Since our approach leaves many topics off the table, we also operate a flexible Special Projects Fund, which allows us to respond to opportunities that are timely, innovative, and can make a difference—even though they fall outside of our priority areas. We choose priority areas in a methodical fashion. To determine where and how the foundation can have the most impact, we periodically assess a range of potential areas to see where there is a substantial and growing need, a genuine opportunity to address that need, and a clear role for NYHealth to make a difference in light of other players and funders. We call this our “need/opportunity/niche” framework, and we have used it every few years to assess whether we are focused on the right issues with the right strategies. When we most recently assessed our program strategies, our board and staff concluded that we had spread ourselves too thinly over time. Even with our stated goal to be focused and disciplined, the needs and opportunities were often so compelling that it was hard to say no. Officially, at that time, we had three priority areas: expanding health care coverage, improving diabetes prevention, and advancing primary care. But within those, we had what could be considered unofficial mini-programs focused on payment reform, behavioral health integration, health care delivery system changes, and oral health, to name a few. We had to return to our guiding principles and get more sharply focused. Furthermore, the world was changing around us. Developments in the external landscape—especially the successful implementation of the Affordable Care Act (ACA) in New York State and New York State’s receipt of a federal Medicaid waiverworth approximately $8 billion— shaped our thinking. We had difficult choices to make about potential exits and new priority areas to enter. Entering a new area is relatively easier; there are usually novel issues, partners, and opportunities galore. Exiting is much harder. An especially tough decision was to exit our work on expanding health insurance coverage, a topic we had worked on since the foundation’s inception. Our post-ACA work in particular was successful: we jumped in immediately after the law was passed to ensure that New York State could implement health reform effectively. NYHealth supported policy analysis and technical assistance to identify key issues and informed the state’s decisions related to the development of its health benefit exchange (Marketplace). As the first ACA open enrollment approached, we supported education, outreach, and enrollment assistance for those who were disproportionately likely to be uninsured: low-wage workers, legal immigrants, and LGBT New Yorkers. By the end of the first enrollment period, more than 1 million New Yorkers had received coverage through the New York State of Health Marketplace. Today, that number is a whopping 2.8 million. We are so proud that New York stands as a national leader in maximizing the opportunities presented by the ACA and dramatically extending coverage statewide. Even with those gains, there was still more work that could be done: developing opportunities to expand coverage for undocumented immigrants and others who remain uninsured, helping consumers use their coverage once they have it, and tackling the issue of the affordability of health insurance. And yet, we claimed success and exited our work in coverage. Its time as a priority area with a dedicated budget, goals, and strategies had come to a close. The extraordinary promise of expanding health insurance coverage in New York State had largely been met; we would see diminishing returns on our investment as the number of uninsured New Yorkers continued to shrink, and given our limited resources, we could have more impact in a new area. Ultimately, we also decided to exit our work in primary care, and to evolve our diabetes prevention work to focus more broadly on building healthy communities where residents have access to affordable, nutritious foods and safe opportunities for physical activity. In addition, we recently identified a brand-new priority area: empowering health care consumers. Going back to our need/opportunity/niche framework, we found that this area fulfilled all of our criteria. We saw a significant need: too often, patients are marginalized rather than treated as the health care system’s most important customers. We identified an opportunity: to ensure that consumers have the tools, resources, and support they need to make informed decisions about their health care. Finally, we could see a unique role for NYHealth to work with partners and grantees to increase consumers’ choice, control, and convenience. Certain stakeholders, like providers and payers, are well organized and well financed, so putting our resources to work on behalf of consumers would help balance the scales of power. Ultimately, we shifted from three priority areas to two priority areas (plus our Special Projects Fund). As we’ve moved from planning to implementing, I’m confident in the decisions made by the foundation. But the process wasn’t perfect, and it was not without its challenges. Three big ones come to mind:

  1. Timing. We embarked on and then completed the strategic sharpening process shortly before our founding CEO decided to step down. Preparing for and managing a change to new priority areas coincident with a CEO search and a leadership transition was not ideal. The board had made decisions after a lengthy and thorough planning process, and it didn’t make sense to discard that work and fully start over. We were eager to move forward with our new areas and to exit our old ones responsibly and respectfully.

At the same time, we didn’t want to move too quickly in setting the parameters of our two priority areas. We wanted the new CEO to have flexibility in shaping the work. Typically, a strategic planning process would commence once a new CEO is installed. In our case, it happened the other way but ended up working well.

  1. Making and Communicating Clear Decisions. It’s never easy for funders to exit an area in which they have built relationships with grantees and tried to establish themselves as a trusted partner. We wanted to be upfront with our grantees and partners, particularly those working in the two areas we were exiting, about our plans. But our communications were somewhat mixed.

Narrowing to two priority areas would free us up to do more work in our Special Projects Fund. We expected that we could occasionally fund projects related to coverage and primary care through that channel. It was hard for us to imagine shutting the door entirely on those two areas if more work was needed. But keeping the door open just a crack sent a confusing and mixed message. Grantees didn’t quite know whether we were in or out, because we had hedged a bit. Some were disappointed about our decisions, but more were simply confused. I don’t know for sure whether it was the right or the wrong decision to remain open to ideas in the areas we had exited—that is, whether a clear “no” would have been better than a “maybe, possibly, if it’s special enough.” In any case, we could have communicated our plans more clearly.

“Can New York End the AIDS Epidemic?”

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:

  1. Identify people with HIV who remain undiagnosed and link them to health care;
  2. Facilitate access to high-quality prevention including pre-exposure prophylaxis (PrEP) to protect against new HIV infections among those at highest risk; and
  3. 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 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.