David Williams: This is David E. Williams, co-founder of MedPharma Partners and author of the Health Business Blog. I’m speaking today with Kandy Ferree, President and CEO of the National AIDS Fund. Kandy, thanks for speaking with me today.
Kandy Ferree: You’re very welcome. Thanks for having me.
Williams: Kandy, what is the National AIDS Fund?
Ferree: The National AIDS Fund is a national non-profit organization. We’ve been around for a little over 20 years. Our primary purpose is to marshal resources from corporations, foundations and individuals and direct those resources out to the communities and programs that are most impacted by HIV and AIDS.
Williams: In a recent survey you indicated a pretty shocking number of 640,000 people with HIV in the U.S., but who are not in care. Can you tell me about that number and how it breaks down?
Ferree: The survey research was commissioned by Bristol Meyers Squib and iss largely based on numbers that the CDC estimates. There are approximately 1.1 million people in the United States living with HIV and AIDS, and based on the number of people that are in care across the country, the estimates are that approximately 640,000 people of that 1.1 million are not in care.
That breaks down in a number of ways: for example about one quarter to one third of people with HIV in this country are estimated to not even know that they are HIV positive because they haven’t been tested. Those are numbers from the Centers for Disease Control and Prevention. Then the balance of the folks who are not in care aren’t in care for any number of reasons. One might be that, up to this point they have not fit within the guidelines for accessing treatment. In other words, they haven’t had a T-Cell count or a Viral Load or the clinical manifestations that would suggest that they needed to be in care. Although I’m not the expert on those guidelines, there has been some new recommendations that people actually start treatment much earlier.
For those people who are actually within the guidelines for treatment, the survey shared two main findings. The first was that people living with HIV often say that they are not in care because of societal personal factors, things like: fear, stigma, and discrimination. Potentially substance use and that kind of thing as well, but mostly the societal things around fear, stigma, and discrimination surrounding HIV. The other set of reasons why people often times aren’t in care are more structural; things like they may not have access to transportation, they may be in a rural community where there is not an infectious disease physician available to them, it may be a mom who doesn’t have child care and therefore can’t make the 30, 40, or 60 mile trip to go to the doctor and spend several hours away.
The purpose of the Positive Charge initiative is to address those barriers that people may be experiencing in a whole host of ways.
Williams: It seems as though providers and patients had some different ideas about the underlying reasons why people are not in treatment. You were touching on some of them there, but can you tell me about what some of those differences are and whether one group is more correct than the other?
Ferree: I don’t know that we can really say that one is more correct, although I think what you’re getting at is that there seems to be a fairly significant disconnect where physicians and health care providers had the perception that the reason that most people who should have been in care were not was because of things like substance abuse or they simply did not want to be adherent to their medication regimen. But in fact, what we learned from people living with HIV is that while those factors do influence a small number of people, the vast majority of people living with HIV who are not in care actually reported that it was more of the societal matters; things like they were afraid to disclose their status.
They were afraid that if they did come forward about their HIV status, particularly if they lived in a rural community, if everyone saw them going to the “AIDS doctor” then they would potentially be discriminated against. So the important thing is not that one is right or wrong, but certainly the report of people living with HIV is very real and that’s their experience. What we hope will come out of this survey is that health care providers will begin to better understand what the real barriers are and then can work with an AIDS service organization and other social service providers to help break down those barriers that can and help get people into treatment and keep them there.
Williams: One of the things that appeared to be major issue for patients was a concern or fear about side effects of HIV medications. Are those fears borne out in practice? Are there mechanisms in place to address those concerns?
Ferree: You’re absolutely right. Side effects was one of the main concerns that people living with HIV indicated was a barrier for them. Back in the early days when we only had drugs like AZT the medications had a lot of side effects. People still believe that that’s the case.
That’s not to say that the current medications don’t have side effects. Some of them certainly do, but it varies from one person to another what side effects they might experience. I think the important thing for people to understand is that compared to the past, the side effects are much more manageable and people don’t have to take nearly as many drugs as they used to.
We now have combination therapies that may be one pill or two pills whereas 10 or 15 or 20 years ago, people might have had to take 20 or so pills a day. So the treatments have made such great advances, but I think it’s important for folks that if they do have questions that they can get treatment information from their physicians and from lots of other organizations out there that can provide treatment information including information about side effects and how to manage them.
Williams: What is the role that different parties can play in addressing this rather large issue of 640,000 people who are not in care? You have mentioned the Positive Charge Initiative. Can you describe that more?
Ferree: Let me talk first about Positive Charge and then I’ll talk a little bit more about the role of other players. Positive Charge is designed to target 13 really highly impacted communities across the country that have significant populations of people living with HIV and where some of the estimates of people who are not in care are most significant.
The purpose of Positive Charge is to be a game changer. A lot of times when people need to get access to HIV care, maybe they have problems with housing or transportation or other issues. What we’re challenging those communities to do who have been invited to apply is to come together as a group of organizations: AIDS service providers, medical providers, transportation, housing, all different types of organizations, and to submit a unified application to the National AIDS Fund, because we really believe that it’s that linkage and that continuum of care that’s going to make the difference for people with HIV.
What each community will propose, we won’t know yet; we will have to wait until those applications come in. Let’s say for example in a particular urban community they are targeting Latino men who have sex with men. Then we would expect whatever strategies they’re going to propose to implement would be able to specifically address the issues of that population. If it happens to be rural African American women in Alabama, then we would expect that the issues in Alabama would be different than L.A. or NewYork City. What we’re really proud about at the National AIDS Fund is our agility and flexibility to work with communities to tailor their responses and strategies to meet the needs of those populations.
On the broader question of what role different players can have, regardless of whether a community is part of Positive Charge or not, there are a couple of really key constituents. One are health care providers –by that I mean both infectious disease physicians (the HIV specialists) as well as primary care physicians, nurse practitioners, and others. They all have a huge opportunity when people come into the emergency room or their general office to encourage HIV testing. A lot of times I think we’re missing people because we haven’t routinized HIV testing. That’s a huge opportunity for us to identify people who may not even know they’re positive.
Beyond that I think it’s back to the survey results. When somebody has tested positive it is important to encourage people –especially health care providers– to not make any assumptions about what someone’s barriers might be or not be. Somebody who is a middle class, apparently well educated and well organized may have some similar transportation barriers or housing issues that someone who may be perceived as poor or as not having as much education. The real key is to ask the person what their challenges might be and then try to work with them.
Then there are the social services providers; the AIDS service organizations, the housing providers, the transportation providers, etc. They all have an opportunity to include HIV testing in their work. If they know that someone who is in their service area is living with HIV they can encourage them to get connected to care and to build linkages with other organizations. That way no matter where the person with HIV might come into the system, they can get linked to the other services that they might need.
Then finally I would say that society as a whole, we need to realize that a lot of times we are the problem. We still have a lot of fear. Because people are afraid of discrimination due to HIV, they may not choose to come out and get tested. That keeps people from getting into treatment and then if they get into treatment later, they tend to not have as good of outcomes in their HIV treatment. So I think as a society or coworkers or friends or family members, we just need to really think about how to be accepting and supportive of someone living with HIV.
Williams: What’s the magnitude of the Positive Charge Initiative? I know you mentioned 13 communities. Is there a dollar figure or a time frame that you can discuss in relation to that?
Ferree: We invited 13 communities to apply. We are hoping that we get applications from all of them. We expect that we will pick about six to eight of those. The grant size for each of those six to eight communities will range from about $100,000 to $500,00 a year for each of three years. Then, based on the successes and presuming that we’re making progress, there is the potential that we would actually renew those grants for an additional two years. So it’s at least a three-year initiative, potentially five. The size the grant will be based on the complexity and the scope and the scale of the particular programs and strategies that those communities are proposing to us.
Williams: World AIDS Day was last week. What is the impact of a day like that? Did you have any involvement with it?
Ferree: Yes. We try to do something around World AIDS day every year. It reminds everybody at least once a year that there are 1.1 million people in the United States alone living with HIV and AIDS. I think so often we forget. We tend to think that HIV is only a problem in sub-Saharan Africa and Asia and the former Soviet Union.
The other thing about this year’s World AIDS Day was that the theme was about access to care all around the world. For us and the Positive Charge Initiative, it reinforced for us that we were doing the right thing, that access to care is a huge issue and utilization of care is a huge issue including in the United States. Hopefully we’ll raise that awareness, but I would also say that for us, every day is World AIDS Day. Every nine and a half minutes according to the CDC another person in the United States becomes infected with HIV. So even during this podcast, in the time that we had this conversation, at least one more person will have become HIV positive.
For us, every day is a day to be mindful about that.
Williams: I’ve been speaking today with Kandy Feree, president and CEO of the National AIDS fund. Kandy, thanks for your time today.
Ferree: You’re very welcome.December 14, 2009