Director LGBT HealthLink
[The following is a transcript of a speech I gave at the LGBT Health Funding Summit on January 28, 2015. The transcript has been slightly edited for readability.]
My name is Scout, and as many of you know, I’ve been working with HealthLink for about 9 years and in LGBT health for dozens of years. It’s been really interesting recently because we’re seeing a real shift in how health work is done across the country now. My arena is public health. That means we spend a lot of time focusing outside a doctor’s office, intervening on the social determinants of health and making a difference as to whether or not we ever see a doctor’s face. With healthcare reform, we’re shifting our national focus on health away from the doctor’s office. Instead, we’re moving towards prevention strategies, towards wellness strategies, and the many different inputs that affect the health trajectory of our lives. For me, from a public health perspective, this is one of the most exciting times that I can remember being in this profession.
So what do I do? I’m Director of LGBT HealthLink. It’s a federally funded program that provides technical assistance to all the federal grantees that are doing work in wellness and chronic disease, particularly related to tobacco disparities and cancer prevention. One of the cool things about this is I get to approach state health departments all around the country. Of course, I spend most of my time working outside of places like New York or California. Instead, I am invited by Texas, Arkansas, Indiana, etc.― states that have almost no contact with the LGBT communities except in their HIV programs. I get to fly in and talk to them about this is how these departments of health need to build relationships with the LGBT communities.
First let’s look at the landscape. What is the single entity that does more health care funding in this country than any other? The federal government. Federal Medicaid and Medicare programs spend more on health than anybody else. Who spends the second highest amount on healthcare funding? It’s the state governments.
As we see the excellent work coming out of Out2Enroll and other organizations, we as a community have put a lot of energy into trying to persuade federal health representatives to be LGBT inclusive. However, the state governments are actually something that we haven’t put nearly as much energy into. They’ve almost been given a pass from us so far. So, I get to work with a lot of the state departments of health and do a lot of cultural competency training with them. I also work out of CenterLink, which is the community of LGBT centers. We represent over 160 LGBT community centers, large and small, around the country. These community centers are where a lot of these frontline LGBT services occur.
So the question for today’s talk is: How do we build a culture of health in our communities? One of the first things we do when we visit a state such as Arkansas or Wisconsin is try to connect them with local LGBT health resources. When I trained the Mississippi State Department of Health staff (who unexpectedly turned out in droves to learn how to include an LGBT focus in their health work), my first step is to say, I need you to build bridges with the local LGBT communities. Unfortunately, in too many states, there aren’t enough LGBT community groups who do health work. One of the things we need to do is build that capacity.
Every other year, HealthLink surveys our 160 LGBT community centers. These were some of the findings in our most recent survey: LGBT centers do a lot of health activities. Sixty percent were training healthcare providers in how to be culturally competent and sixty five percent were doing wellness programming, initiatives such as tobacco control, eating better, exercising more, etc.
One of the things I want to stress is that cultural competency trainings and wellness programming are actually two areas where it’s almost impossible to obtain foundation funding. Local organizations are usually drawing from general operating money in order to provide those services. For example, the Robert Wood Johnson Foundation is funding today’s health conference. I love that. Many years ago, we did a little campaign to persuade the Foundation to include more LGBT funding in its work. The president was nice enough to commit to more inclusion. As a result, I ended up getting a Robert Wood Johnson Tobacco Policy Change Award. This work was very successful. If you ask the people in Washington D.C. how their smoking ban was passed, they still credit the LGBT communities for playing a key role.
Now understand, I used to run teams of grant writers. Caitlin Ryan actually taught me how to do it. I’ve raised over $110 million through grant writing. I can do grant writing; I’ve got that down. But when Robert Wood Johnson asked me to raise a matching gift of only $50,000 to continue year two of this very successful tobacco-policy change work, I couldn’t get anywhere. The program folded. So as we think about the cultural competency trainings and wellness programs that happen, I need to point out how few foundation resources we have to support this key work.
Let’s examine this from another angle. HealthLink actively engages in needs assessments around the country. We’ve provided a stock needs assessment template and shepherded a few different states through this process. I want to share some of the findings from one particular state. I won’t even mention the state because the point is that I think it’s pretty representative of many states. Let’s just say it’s in the South and it’s a red state. So what are the people experiencing and what are they talking about in regard to their health priorities? In this state, 64% of the population reported that they feared coming out to their healthcare provider because they thought there was going to be negative reaction. Actually, you will find out that’s more than justified. I’m surprised it is not even higher, because one-half of the population has had a negative experience after coming out to a healthcare provider. 97% of the people in this survey wanted to incorporate more wellness strategies into their life. They want to eat better, exercise more, receive cancer screenings, and become tobacco-free. Yet, two-thirds of them had never seen any wellness program that had been tailored to the LGBT communities. And I am surprised it is not 100% of them, because I don’t think there has ever been a program tailored to us in this state.
Right now we have a wave of wellness activity around the country. Some of this is spurred by healthcare reform. If you are familiar with the federal statistics, you may know that almost $1 billion dollars hit the street in these grants called Communities Putting Prevention to Work and later Community Transformation Grants. This wellness funding was for cities, states and metropolitan areas around the country to build this wave of more farmers markets, bike paths, tobacco cessation programs, smoke-free housing, etc. Of the hundreds of millions of dollars that hit the streets the last five years, how many LGBT programs were funded? Two. That’s all I know about.
We have a culture shift right now towards wellness that is occurring across our country. If we talk about LGBT disparities, I’m sorry to say but I actually think that we are building a new LGBT disparity relating to wellness because we are not standing up and saying we need to be included in funding.
Let’s go back to our needs assessment, what do the people in this state say are their top health issues?
- Mental health
- Access to healthcare
A couple notes about these findings: First, let’s talk about the single issue that has taken more years off of our lives than any other. According to the CDC, there is one health challenge that is currently predicted to kill a million of us. And there are only nine million of us in the country, right? A million of us will die early from this health issue and it’s not on this list. What is it? It’s smoking. Right now LGBT people in our communities spend $7.9 billion a year on cigarettes. The last time we checked that was 65 times more than the grant funding for all LGBT issues combined. Smoking is actually the ninth health issue; unfortunately, because most of the funders and policy makers rarely include us in their tobacco control funding, we don’t often see it as one of our priorities. Still, tobacco is by far the thing that is going to affect more of us than any other health challenge.
The health priority that was dead last was cancer. If you noticed in the recently released LGBT Vital Funding health report, there is $4 million given out annually for LGBT cancer. Who is funding most all of it? The Komen Foundation. So our cancer funding is exclusively for cancers related to women. Do you know that gay men have rates up to 34 times higher than other men for anal cancer? There is almost no funding for that at all right now. Do you know that if you are HIV-positive and you have your meds under control, the top two reasons you are going to die are smoking and cancer? Again I must emphasize, these are two major funding gaps.
Let’s look at what the LGBT community members did identify as their top health issues: suicide, mental health, bullying. What do I conclude from this information? That right now, we don’t yet have a culture of health in our communities. Right now, we have a culture of survival. We are very crisis driven.
Let me give you an example of how this plays out. We contacted LGBT community centers earlier this year. We asked, ”What would it take for you to pass a wellness policy? A policy of committing to offering healthy food, exercise options and generally promoting health within your organization?” Now understand, these are organizations that already do health work in most cases. It was really interesting because of one of the primary reactions we received was, “We can’t go there because we are too crisis-based right now. We have another suicidal youth coming to our door; another homeless adult; another person whose parents are being horrible to them.” It’s a day-to-day crisis. This really shows we don’t have enough capacity in the organizations that are doing the frontline work so that they can build programming that feeds larger community level goals.
Where does this culture of crisis come from? We know according to GLSEN school climate survey that 85% of our LGBT youth experience verbal harassment in the last year. We know that 56% experience discrimination. We’re raising community members that are experiencing stigma from the earliest point in their life. How much is really being done for youth to find a place where that stigma can be neutralized? Where they can be inoculated against it? 90% of the LGBT community centers right now are doing youth work. They are often the frontline places, along with the GSA networks, where the youth are congregating. Too often in this work right now, there is nothing coordinating these groups. My organization, which is the national association of the community centers, has a program called YouthLink to do just that. Arcus had funded that program, and that’s great. But right now there’s no one supporting that coordination. We are still trying to look for more resources to share lessons between these youth organizations. There also isn’t a big youth conference and the GSA networks don’t have a single convening body. Our youth work, if anything right now, is concentrated in national groups that do not do local programming and offer little coordination for the many local groups. These groups are valuable, but we should be able to access funding to build and sustain local work as well. We know these stressors experienced by our youth translate directly into health disparities for our adult population.
That’s my overview of where we stand with our health culture. Now I am going to suggest three opportunities that I believe will build us towards a culture of health as quickly as possible.
The third tier level of opportunity is to fund early.
As I said, social determinants of health demonstrate anything that happens earlier in life has a larger effect on the trajectory of your whole life. The more we do to stabilize those youth programs and those youth that are experiencing discrimination, the better off the whole population will be five, 10, and 15 years from now.
So what is the second tier level of opportunity? To fund technical assistance so we can move our organizations into bigger funding streams.
States are the number-two health funders, right? And just so you know, the second most likely topic for states to fund (beyond HIV) is youth services. But out of all the organizations we asked, 40% said that their states were not welcoming the LGBT issues. So I want to ask: are we okay with that? Do we feel comfortable with the fact that 40% of states are refusing to fund LGBT health? Hopefully not. Hopefully, that’s something we really will change. I love Kellan Baker’s message that we need to do more administrative health advocacy work. That’s exactly what it will take to change the state funding patterns. We need to hold the states to a higher level of accountability, as we’ve been holding the feds to a higher level of accountability. But accountability alone won’t fully solve this problem. Another barrier we have is that proposals to states and the federal agencies are much more complicated than the ones to foundations. 70% of the community centers say that they have problems applying for state and federal proposals because they have staffing issues, staffing limitations, and not enough expertise. For example, recently, there was a federal pot of funding for racial and ethnic minority wellness programming. It was called REACH. And let’s put it this way, it would have benefited them to fund an LGBT organization. So I called a racial and ethnic minority LGBT organization that we all know does excellent work― and asked them please try to put in a proposal for this money. It was a significant award. Bless them; they tried. About halfway through, they admitted we just don’t have the capacity to do the grant development. Therefore, the second thing I’d say is that it would be great to have more technical assistance for people to do state health advocacy and grant writing. Why not fund some national grant writers who are on call to help local organizations get into bigger funding streams? It’s a small investment that could create new funded local programs all over the country.
Now we’ve reached onto my first-tier opportunity to build a culture of health. This is the single strategy I think would be the most important to accomplish, and funders are in a particular position to do it. Better yet, it doesn’t involve one single grant.
When we saw how Community Transformation Grants essentially skipped our communities, we started to build a set of recommendations of how the next Request for Applications (RFA) could be LGBT welcoming. Not even just LGBT welcoming but LGBT encouraging.
We thought about how we train health providers to be culturally competent and realized, Why not ask funders to be culturally competent as well? So we created a set of LGBT cultural competency standards for funders. These standards weren’t complicated; they basically conveyed a single message: whenever you fund population-based work, make sure you ask for some LGBT tailored work in the proposal’s action plan. Usually you do this in the same way you’d ask for work to be tailored to overlapping disparity populations, like racial and ethnic minorities or low-income people, etc. But don’t just mention the words LGBT in the RFA. Specifically ask for steps in their action plan. Score applicants on inclusion. It’s that simple.
What if every LGBT funder here joins Grantmakers in Health, attends their meetings, and asks what each health funder is doing to ensure LGBT inclusion in their mainstream funding? In the health world LGBT funding is only a tiny sliver of the pie. But if you can step up and ensure the rest of the pie includes tailored work for us, that’s the real win. What if Funders for LGBTQ Issues put out a policy statement of what LGBT cultural competence is in health funding? The 2011 LGBT Institute of Medicine report has a great model on this. They recommended to NIH that all of their research proposals must either include LGBT people or justify exclusion to avoid getting a lower score. What if that model was adopted by all health funders around the country? That’s where we don’t just have the power of the people in the room, but now we’ve leveraged our voices to influence a much larger stream of funding.
So what’s my first tier opportunity? The single best way to achieve a culture of health in the LGBT communities is by creating a culture of LGBT in health funding.