The Heart of America Men's Chorus will be performing at "A Sweet Affair," a fundraiser hosted by Dr. Donna Sweet for the emergency fund that funds healthcare for patients with HIV/AIDS who need financial help with those expenses. It will take place on September 18th. The chorus is honored to participate in this event and encourages support of this charity. The theme for this year's event is centered around superheroes.
Below is an interview with Dr. Donna Sweet about her work in the field of HIV/AIDS. It appeared in 2010 on Positivelyaware.com and was conducted by Jeff Berry.
The woman
“behind the curtain” in Kansas
Interview by Jeff Berry
Jeff Berry: Please tell us a little bit about yourself.
Donna Sweet, M.D.: I have been doing HIV work since
1983, when I saw my first case in Wichita, Kansas, and I’ve been the
principal investigator for the Mountain Plains AIDS Education and
Training Center [MPAETC] since 1988. During this period, I spent a great
deal of time stumping rural Kansas trying to make life livable for the
people who were there because Kansas was not terribly tolerant, as many
states weren’t. I spent a lot of time going from small town to smaller
school system talking about HIV—what it was and what it wasn’t—and
trying to do prevention work. It’s interesting that Kansas, which is not
at all progressive or liberal, was one of the better, more progressive
states when it came to things like HIV/AIDS education. There was a
Governor’s AIDS Task Force that I was on—as a result of that, the school
board mandated that HIV education and prevention messages had to be in
all school districts in Kansas. That lasted until about 1997 and a much
more conservative school board got rid of that mandate. In fact, we
went, in the late ’90s or 2000, to a much more abstinence-only based sex
education, which has been problematic.
There are 105 counties in Kansas and I’ve been to most of them,
especially any that had a public health department or a hospital, doing
HIV education. As a result of that, my name was the one people
remembered if they did find AIDS cases and because of that, my clinic,
my team, takes care of a little over 1,250 HIV-infected patients. We
cover, literally, over three-quarters of the state of Kansas—my clinic
is in Wichita. As a result of that, we see many people who live in very
small towns. We take care of them and get them enrolled in the system,
and then see them in the outreach clinics, so people don’t have to drive
the 200-250 miles it would take to get into our system if they
physically had to come to Wichita.
JB: What do you think are the lessons learned in
your experience working in Kansas all these years that might inform some
other rural communities across the country?
DS: In rural states like mine, you don’t get
anywhere near the amount of money per capita for HIV patients that big
jurisdictions like New York and L.A. do. We have divided Kansas into
nine case management AIDS areas with a case manager in each of those
regions, and we have an outreach case manager who goes with me to each
of those clinics, so that all the paperwork can get done, the meds can
be had, and whatever it takes is done to get people care.With
physicians, our focus has been to try and get them to routinize testing,
to find the people in Kansas we don’t know about. I’m continually
frustrated that a great many patients, 40–45%, just like the national
average, come into our system sick, quite sick, and that just shouldn’t
happen anymore. So we spend a lot of time trying to get clinicians to
routinize testing, to understand the 2006 CDC Guidelines for
routinization of testing which promote at least one HIV test for every
American between the ages of 13 and 64, which have largely gone ignored
in many places.
What I tell them is that you don’t have to accept the responsibility
of treating these patients—that’s what frightens many clinicians; they
just don’t know anything about HIV/AIDS care. I tell them this is how
you do the test, this is the opt-out system, you don’t need separate
informed consent. Find the patients and then call me. Call me or call
somebody, but we’ll make sure we can help you link that individual to
care.
About 45% of the people who come into my system of care have no
visible means of health care coverage so we can get them Ryan White, I
can get the labs done through the system that I have, and I can give
discounts. But it’s very different if you’re ordering one CD4 count, one
HIV genotype, and one viral load out in a small system. That reference
laboratory is going to charge clinicians a fortune to get that test, and
then if the patient doesn’t have the resources to pay for it, the
clinics are looking at a big red hole in their budget. Small town
physicians are small businesses and they’re struggling right now,
especially in primary care.
JB: So it’s not only fear or lack of awareness among patients or potential people at risk, but also among the providers?
DS: I can look at anybody and say, “He’s got a
cough, he needs an HIV test; he’s got a fever, he needs an HIV test,”
because I see it every day. But if somebody’s out in Small Town, Kansas,
who doesn’t really think about this because he or she doesn’t see it,
it’ll be the fifth thing on their differential, and that’s why it gets
missed as often as it does.
In rural states like mine, you don’t get
anywhere near the amount of money per capita for HIV patients that big
jurisdictions like
New York and L.A. do.We had a case not too long ago that shows
that serendipity works, I guess. A young man was in the hospital with
pneumonia, and wasn’t getting better. But the reason I got contacted is
because there was an inadvertent needle-stick. A nurse stuck herself
when she was drawing blood on him. We’ve encouraged rapid testing in
that situation, which this hospital was doing, and the gentleman was
HIV-infected. He would not have come to our attention as to why his
pneumonia wasn’t getting better because he was being treated as though
he had community-aquired pneumonia, and he had bad pneumocystis. So it
was an accident, a lucky accident, that he was even found to be
HIV-positive before he got even sicker.
JB: I was reading through some of your Ryan White
testimony, when you were talking about the Girl Scout-style fundraising
and what you have to do to keep your clinic afloat. Is that typical?
DS: I think all of us participate in one way or
another, be it ASOs [AIDS Service Organizations] that are doing AIDS
walks, or those who are contributing to the care of the patients. Ours
is largely in part because ADAP in Kansas doesn’t cover anything but
anti-infectives and antivirals so, especially since my patients are
living longer and getting everything from diabetes to hypertension to
lipid problems, there are lots of other medications that they need that
are also expensive. I also think it’s important—and all of my peers and
people I’ve worked with for years all across this country are doing
this—to be involved to some degree in some sort of social activation of
their community, and fundraising is one way to keep people aware that
it’s still out there, that we still have a problem.
JB: You also talked about explaining to physicians
about the opt-out testing and then having them call you—I’m just
wondering, is there someone like you in every rural state?
DS: There really is. For the most part, there’s a person or group of people that does it in most rural states.
JB: Due to the flat funding of ADAPs, do you foresee waiting lists becoming a problem in your state?
DS: No, but I was talking to Dr. Kristin Ries and
there is a waiting list in Utah now and apparently, if there isn’t one
in Nebraska, it’s about to start [Nebraska had a waiting list of 75 as
PA went to press], so, as I’m sure you know, there’s an increasing
number of states going on that waiting list.
JB: So the patients you treat who are insured—are
they able to get into the co-pay programs of the companies? Do the
providers know about them?
DS: Well, we certainly do. I think most of us who
have many patients, it behooves us to figure out how to get some help,
because quite frankly, sometimes those insured patients, with the way
co-pays are on some meds, people think they have better insurance than
they do until they have to use it. If you’re taking medications that are
costing a couple thousand a month, especially if you have to take two,
three, or four different scripts, your co-pays may end up being in the
hundreds per month. So yes, using some of these newer ways the companies
have of helping out with co-pays—$200 every month on this pill—I know
you’re aware of those programs, they can be quite helpful.
J
B: That’s good to hear. And the patient assistance programs for the uninsured are kind of the same thing, I would imagine.
DS: Yes, that’s what our case managers and social
workers are always on the lookout for. In my little office, there are
five of us who are providers—two nurse practitioners, a PA [physician
assistant], my junior partner, and myself—we’re all credentialed by the
AAHIVM [American Academy of HIV Medicine] as HIV Specialists—and we
employ one full-time person who does nothing but patient assistance
paperwork.
JB: In terms of stigma, can you talk a little bit about how that’s a deterrent to care or what might be a way to overcome it?
DS: Boy, I wish I could figure that out. I’m not
sure it’s just the rural nature of communities; sometimes communities in
big cities can be fairly closed. It’s still a homophobic society in
many parts of the world and there are many of my patients who I think
avoid getting the care they need, or the tests they know they need,
until they just can’t deal with it anymore because they don’t want to be
“found out.” And the “found out” is not so much that they have HIV or
AIDS, but it’s that they’re gay. There’s still a very large amount of
that that goes on. I have a number of people who don’t ever want me to
leave my name on their phone system because somebody else might pick up
their calls. That’s the downside of a state like ours. Though I take
care of a fairly large number of non-HIV-infected people as well, people
jump to the wrong conclusion and sometimes to the right conclusion. We
have people in many of our smaller rural towns where there is a local
pharmacy, but there’s a pharmacy in Wichita that’s worked with me for
years and years. I have no interest in it financially, but it’s just
always been wonderful in helping my patients. We have a lot of people in
small towns who have this pharmacy fill their prescriptions and mail
them to their home in a plain brown wrapper, because they don’t want to
go to their pharmacy and pick up their zidovudine or whatever when the
pharmacist would know what their diagnosis is.
JB: Wow. Yeah, I wouldn’t know the answer to that one either, but I think just shining some light on it might help.
DS: It isn’t as bad as it was 10 years ago and it’s
certainly not as bad as it was 20 years ago, but you know, I live in a
land of Fred Phelps—I’m sure you’ve heard of Fred—and he’s still active
in our part of the world.
JB: Oh, yeah, I remember, I was in the march through
D.C. in ’96 and they were all standing there and we marched by and got
the crowd going, got them all to chant, “God doesn’t hate”—it was
fabulous, we shouted them down.
DS: That was good.
JB: So what keeps you going? I mean it sounds like you’ve got a lot going against you.
DS: Oh! I love my patients, I love what I do and
there’s always something to work to improve. The people in my clinic,
we’ve all worked together for a great long time.
JB: So do you have any words of advice for someone else living in some rural part of the country, patient or provider?
DS: Well, I would say find out who the local treater
is and when we say local, in places like Kansas, I know people who go
to dinner and drive 100 miles because that’s the only place if they want
a nice restaurant. Find out, through the various ways, you can do it
through AAHIVM—they have the website that has credentialed providers and
there are credentialed providers in some very small parts of the world
if you just look. You can go through the National Clinical Consultation
Center, which is part of the AETC network. You can find an AETC that
covers every state.
JB: Yeah, that’s really important, to find a
provider. So that’s interesting—driving 100 miles for a meal isn’t
uncommon. That kind of puts it in perspective!
DS: If you ask what is one of the major problems in
rural America for access to health care, not just HIV, but any health
care, it is transportation, because so many patients don’t have a good
car. That’s one of the reasons we started doing the outreach, going to
the communities, because it takes a pretty decent vehicle to drive 240
miles both ways, plus that’s going to be a whole long day if you’re
sick. A lot of people don’t have access to good transportation and there
is no public transportation in a state like Kansas.
JB: That’s a good point. Is there anything else you’d like to say?
DS: Well… other than that I love taking care of my
patients, it’s an exciting field and we just have to continue to
encourage young people going into health professions—physicians, nurses,
pharmacists, dentists—to really help take care of this population. It’s
growing and I would like to see AIDS mainstreamed enough that people
would feel comfortable taking care of AIDS patients. Part of it is the
science—it is difficult to keep up—but part of it is still that the
smaller you are, the more likely it is that somebody’s going to look
askance at you if you have an AIDS patient in the waiting room sitting
next to them and they’re there for their well-baby check or their
hypertension. That’s something that’s kept clinicians, even interested
clinicians, out of the field, because they’re fearful of what the
community will think. They certainly have to make a living, so they
can’t disregard the feelings of the entire community to take care of a
few. I think we really need to continue to de-stigmatize the disease
everywhere.
