Kevin Robert Frost, CEO of amfAR

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Mark Masselli: This is Conversations on Health Care , I’m Mark Masselli.

Margaret Flinter: And I’m Margaret Flinter.

Mark Masselli: Well Margaret , we ’ ve ended the year on a pretty astounding note.
Nearly 200 nations have finally signed onto an agreement to combat climate change.

Margaret Flinter: And the UN’s Climate Change Conference in Paris yielded a historic
agreement to contain CO2 emissions emerging nations such as India and China and as
they are discovering in China with the devastating air quality issues that they are having
there, greenhouse gas emissions are a real threat to human health.

Mark Masselli: And the World Health Organization is deemed climate change and
st
global warming is the biggest threats to the human health in the 21 C entury.

Margaret Flinter: And the World Health Organization’s D irector has urged the world’s
h ealth care providers to become champions of efforts to limit the hazards to health that
are wrought by CO2 emissions and the globe’s warming temperatures.

Mark Masselli: Other health issues that had a devastating effect on global health, the
AIDS epidemic which has caused the death of 23 million people around the world.

Margaret Flinter: And our guest today is on the front lines of seeking a cure for this
deadl y pandemic. Kevin Robert Frost is the CEO of amfAR , one of the first nonprofit
organizations formed over 30 years ago to confront the AIDS epidemic by sponsoring
research to find a cure.

Mark Masselli: Lori Robertson also stops by, the managing editor of FactCheck.org, is
always on the hunt for misstatements spoken about health policies in the public domain
but no matter what the topic, you can hear all of our shows by going to chcradio.com.

Margaret Flinter: And as always if you have comments, please em ail us at
[email protected] or find us on Facebook or Twitter because we love to hear from
you. We will get to our interview with Kevin Robert Frost in just a moment.

Mark Masselli: But first here is our producer Marianne O'Hare with this week's headline
news.

(Music)

Marianne O'Hare: I'm Marianne O'Hare with these Health C are H eadlines. The good
news is, is there is a cure. The not so good news the cost the drug that successfully
cures hepatitis C is starting to have an impact not only on the health of those suffering
from the liver killing virus but it's also taking a toll on state Medicaid budgets. In 2014,
33 states spen t a combined $1 billon treating hep C patients with Sovaldi Gilead

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Services hep C curing drug that runs on average $84,000 to tre at one patient that was
spent in less than 3% of the Medicaid patients in need of the drug and those on
Medicaid are told they have to wait until they are sicker .

Florida may not have expanded Medicaid but the state is taking up the subject of
medical mari juana that would allow prescriptions for medical marijuana for patients
suffering from a number of debilitating diseases . 23 states in the District of Columbia
meanwhile allow marijuana use for those suffering from a range of ailments from HIV,
glaucoma , cancer and epilepsy and melanoma is on the rise the FDA is considering a
ban on minors using tanning beds in an effort to cut down on the rise of skin cancer in
young people.

The CDC’s Tom Frieden continues to urge Americans to get the flu shot this year
warning that window is narrowing before flu season kicks into high gear. Meanwhile
Google has made inroads in the business of tracking the flu epidemic which is off to a
slow start thanks to the unusually warm weather, Google’s Flu Trends have provided
p ublic health officials with real time tracking analytics on flu outbreak s throughout the
country. Now it's turning its sites on sexually transmitted diseases which are on the rise
in this country and elsewhere. Public health researchers say tracking for prevalence of
searches for things like painful urination could target their efforts to do more outreach in
areas with higher queries on the Google search engine. I am Marianne O'Hare with
these Health C are H eadlines.

(Music)

Mark Masselli: We are speaking today with Kevin Robert Frost , Chief Executive Officer
of amfAR, t he Foundation for AIDS Research, a 30 - year - old organization dedicated to
advancing the science that will end the HIV AIDS pandemic. Mr. Frost has served on
P resident Obama’s Advisory Committee on HIV AIDS and as Vice President of Global
th th
Initiatives , he also served on the Advisory Committee for the 14 and 16 Annual AIDS
Conference in Barcelona and Toronto and has worked as an inpatient coordinator for
the A IDS Program at New York City’s Bellevue Hospital . Mr. Frost has advised the FDA
on breakthrough age drug development . Kevin welcome to Conversations on Health
C are

Kevin Robert Frost: Thanks for having me.

Mark Masselli: So amfAR was formed three decades ago as one of the first not - for -
profit research organizations dedicated to seeking a cure for AIDS and when you joined
in 1994 an HIV or AIDS diagnosis was synonymous to a death sentence in most cases,
could you talk to our listeners about the earl y days of amfAR and how your community
of experts help turn the tide in treating the AIDS epidemic ?

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Kevin Robert Frost: Before I came to amfAR, immediately before I came to amfAR , I
was working at NYU Bellevue H ospital here in New York City and I was work ing on a
research protocol for an infection that a lot of people with AIDS got which was called
CMV and it was an infection in the eye that would lead to blindness , and they were
mostly men in those days when they would come to our clinic to be enrolled in these
research protocols their average life expectancy was nine months.

We are living in a whole new world today in which people with an HIV diagnosis if they
are fortunate enough to live in a country where they have access to treatment and they
have acce ss to a doctor and h ealth care can expect to live a normal healthy life well into
their 70s which is not to say that it's still not complicated you are dealing with a chronic
illness , but we have just made enormous progress as a result of having changed th e
research paradigm in this country and having changed the drug approval process which
led us to the point where we were able to make enormous strides. A 30 - year - old
epidemic sounds like a long time but the amount of progress that we have made in
fighting this disease and understanding this disease has been nothing short of
astonishing.

Margaret Flinter: When you look at the list of achievements that have been accrued by
amfAR , your early work led to the development of protease inhibitor s and maybe share
with us what was remarkable about those early days of AIDS research given how little
we actually knew and how did some of those early discoveries really shaped the
treatment protocols that are so commonplace to that?

Kevin Robert Frost: 25 and 30 years ago there wasn’t a lot of money being spent in
research and in fact amfAR was one of the first organizations to understand at least on
the nonprofit side that it was only going to be investments in research that would bring
us the kind of a nswers that could make a difference in fighting the epidemic. The NIH
and pharmaceutical companies were not investing huge sums , and so we were able to
leverage even small amount s of money to achieve important breakthroughs.

The philosophical way in which amfAR has approached its work is very different from
the way the NIH and pharmaceutical companies and those with large amounts of money
sort of approach their work. We have from the very beginning s of this organization
viewed ourselves as venture capital ists in research if you will. We ’ ve never had an
endowment here because we have always believed that our job as an organization was
to put ourselves out of business.

So we have made investments with every dollar that we have been able to raise but we
have done it in the highest risk areas knowing that a lot of those investments would fail
but the ones that would payoff we hope at least would have an outsize impact , and I
think that’s been true in the area of protease as you have mentioned but also in the a rea

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of CCR5 as you have mentioned mother - to - child transmission and other ways that we
have had significant impact it's because we have taken greater risks to get there.

Mark Masselli: Here in America AIDS was really very much associated with diseases of
t he gay population or IV drug users but in the Third World where there is a much wider
pandemic amfAR has been pioneering research on mother - to - infant infection how close
are we to get into zero mother - child infections?

Kevin Robert Frost: Globally , this i s an epidemic between men and women , and as a
result of that it is an epidemic of transfer from mothers to their newborns. We have
essentially all but eliminated infections from mother to newborns here in the west but we
still have a very long way to go in terms of eliminating those infections in the developing
world. And the big part of the problem is just simply access to h ealth care , particularly ,
prenatal care because we know putting people on treatment for HIV disease will prevent
transmission from mothers to their newborn. There are nearly 39 million people living
with HIV globally and roughly 15 million of them are on treatment meaning less than
half, 40% , a nd if you roughly estimate that half of those are women you see what kind of
a challenge we face and very often what they have to do with are all of the tangential
issues that surround access to h ealth care and aren’t necessarily specific to our
understan ding of how to prevent transmission from mothers to their newborns.

Margaret Flinter: amfAR played an early role in promoting some of the really important
government policies both domestically and globally. There was research going on but
access to trials was actually quite limited . S o could you talk with us a little bit about the
government policies that were spearheaded by amfAR such as the HOPE Act and the
Ryan White CARE Act

Kevin Robert Frost: Well what the early HOPE Act did and eventually w hat Ryan White
did is that it provided a framework for the states to take federal money and use that
money in service to providing care for people with HIV. And in many states, particularly
in the south , the only money that was spent in many of those stat es on HIV AIDS was
money that came from the federal government a big part of that in my view was related
to sort of the stigma and the populations that were affected here , they tended to be drug
users, they tended to be gay men, they tended to be all these populations that a lot of
states didn’t want to look at or deal with.

What we were able to do here early on in the epidemic was to understand very clearly
the political dimensions of HIV disease. And it was really one of the first diseases I
think that w e really had a very big political dimension to it and part of the reason for that
was the lack of a political attention that the disease received. President Reagan did not
publicly speak about HIV until 40,000 people in this country had already died from it.
And you contrast that with something like legionnaire ’ s disease and how much front

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page newspaper attention that disease was receiving when only a handful of people
were afflicted by it , the population affected were different and reviewed differently by
society and certainly by politicians , a nd I think by understanding those political
dimensions we were able to advocate for policies that ultimately made access to h ealth
care , access to tr eatment and even by extension access to research more available to
the people who needed it most.

Mark Masselli: We are speaking today with Kevin Robert Frost , Chief Executive Officer
of amfAR, t he Foundation for AIDS R esearch , a 30 - year organization dedi cated to
advancing the science that will end the HIV AIDS pandemic. N ow I want to talk about
that intersection of the political and the regulatory we had the opportunity of having
Commissioner Hamburg from the FDA on the show recently and I am going to ha ve you
share with our listeners how you worked your collaboration with drug makers as well as
with the FDA what the experience has been and what's the state of that relationship
today.

Kevin Robert Frost: If you roll back the clock 30 years to the early y ears of the AIDS
epidemic what you found was an agency that was entrenched in its views and those
were largely dinosaur - ic about how the drug development process had to happen and
what it wasn’t prepared to do was respond quickly to an emerging epidemic th e way HIV
was. So activists came together and working with organizations like ours many others
were able to effectively change the paradigm of how drug approvals were done at the
FDA and created systems that had never been created before like parallel acc ess to
experimental medicines such that even before a drug would get approved community
access could be made available to those who didn’t qualify for clinical trials.

When we first began almost all drug trials in this country were done in academic
setting s. There is no H drug that has probably come onto the market in the last decade
that hasn’t had the vast majority of its broad access research done in doctor’s office in
the very communities where it's needed most and that has not only sped up the
researc h process itself but it's provided greater access to people for experimental
medicines the ones who absolutely need it most.

Margaret Flinter: If you had told me a few decades ago that we would now have HIV
drug protocols that allow for a normal lifespan in most cases I would have been
stretched to believe that but what's really remarkable is that global health officials target
2030 as their year for a cure . T ell us and our listeners about some of the functional
cure stories that have garnered recent attention the so - called Berlin Patient or the
Visconti C ohort and what kind of promise do these stories hold for the broader
population?

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Kevin Robert Frost: It all begins in my view at least with the Berlin Patient because this
was really and truly a pivotal moment in the history of AIDS research. The Berlin
Patient is a story of a young man who was living with HIV for many years who was
diagnosed with cancer and needed to undergo a bone marrow transplant as part of his
treatment. His doctor used a very experimental protocol in which he found a donor who
happened to have a mutation in a protein on the surface of CD4 c ell s called CCR5.

And we know that CCR5 is the entry way for HIV. This person underwent this bone
marrow transplant and ultimately h e adapted the immune system of the donor and
became resistant to HIV infection , and so ultimately he is the only person whom there is
broad scientific consensus has been cured of his HIV disease . F or the very first time ,
we had at least proof that someone could be cured even if we couldn’t replicate it and
we have not been able to replicate it , it showed that someone could be cured of this
disease.

And what we then moved from was an era of discovery research because we had spent
25 years in the epidemic tr ying to understand all of the elements. We moved out of that
era and into an era of technological challenge through the Berlin Patient we now
understood what the challenges were to curing people and over the course of the last
seven or eight years there h as been this tectonic shift in the thinking of scientists around
what it would take to cure people.

But in addition to that you have these other stories that you mentioned like the Visconti
C ohort in Europe which is a group of people who have been living for a very long time
with HIV but have essentially self - intact immune systems, immune systems that are
effectively controlling the infection and what that has done is provided a different kind of
p aradigm which is more akin to sort of our understanding of how to approach cancer
which is to create a remission.

And so we largely moved away from the use of the term functional cure because what
we are actually trying to do is create an environment in pe ople where in their own
immune systems whether stimulated through a vaccine or stimulated through certain
treatments could effectively control HIV infection. The HIV isn’t causing any disease , it's
not infectious to other people and it's controlled withou t the use of ongoing treatment s or
drugs. And so that would be a state of remission I think that will really probably be the
next step in our journey towards ultimately developing a cure which will rid [ph] the body
of HIV.

Mark Masselli: Well Kevin we a re working to contain the spread of virus through
targeted prevention measures and the western world has done a pretty good job for the
most part but there are pockets of concern some 50,000 new infections occur each year
in this country while the many HIV positive people are getting the antiretroviral drugs

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millions more have yet to gain access to these life saving treatments and new drugs like
Truvada the so - called PrEP A pproach are showing great promises in preventing
transmission can you tell our listeners about prevention methods and what can be done
to improve our prevention efforts?

Kevin Robert Frost: Certainly any conversation around prevention begins with condoms
because they have been enormously effective in our 30 - year battle with this disease.
You also have things like syringe exchange which had driven down the rates of new
infections at least here in the state of New York they are reporting zero new infections in
inj ecting drug users largely because of a very long campaign to provide clean syringes
for those who are injecting drugs. Circumcision has been proven to reduce the rate of
acquisition and so you have circumcision programs throughout Africa which are highly
effective you have mother - to - child transmission programs which have reduced the rate
of transmission from mothers to their newborns. You mentioned PrEP which is a single
daily pill that can prevent the acquisition of HIV then that’s being used a great dea l
particularly here in the west in gay communities and then you have something that
came out of a study just a couple of years ago which was also I think a seminal moment
in our history which is referred to as the HPTN study 052 .

What the 052 study showed was that when you put people on treatment and they are
effectively treated meaning their viral load levels are driven down so low that they are
undetectable , those people have a 0% chance of transmitting the virus to their partners.
This is virtually zero chance of transmitting it . S o if you add up all of these intervention s
we actually have the tools in our grasp today to completely and radically change the
trajectory of the epidemic worldwide. We could drive down 50,000 new infections to
nearly zero in this country.

The reason we haven’t been able to do that is because we don’t have the political will
and the financial investments to back up the scientific achievements , and so until we are
prepared to make those investments we are never going to get to the point where we
can end the epidemic through those methodologies alone that’s why we continue to
invest in peer research it's why we need a vaccine if we really want to end the pandemic
worldwide.

Mark Masselli: We have been speaking today with Kevin R obert Frost CEO of amfAR,
The Foundation for AIDS R esearch , a 30 year organization dedicated to advancing the
science that will end the HIV AIDS pandemic , you can learn more about their work by
going to amfar.org or you can follow them on Twitter @amfAR. Kevin , thank you so
much for the work that you are doing and for joining us today in Conversations on
Health C are

Kevin Robert Frost: Thank you for havi ng me.

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(Music)

Mark Masselli: At Conversations on Health C are , we want our audience to be truly in
the know when it comes to the facts about h ealth care reform and policy. Lori
Robertson is an award - winning journalist and managing editor of FactCheck.org , a
nonpartisan, nonprofit consumer advocate for voters that aim to reduce the level of
deception in US politics. Lori what have you got for us this week?

Lori Robertson: Hillary Clinton said at the democratic presidential debate in November
that nearly 3,000 people had been killed by guns including 200 children since the
democrats had last debated about a month before. Some of our readers asked us if
that was correct. Comprehensive data on that specific timeframe isn’t available instead
Clinton extrapo lated the numbers based on figures on gun deaths from past years. In
2013 , there were 33,636 gun deaths according to the Centers for Disease Control and
Prevention that averages to about 2,800 gun deaths or nearly 3,000 as Clinton said ,
each month of the year. These are the most recent numbers from the CDC. They
include suicide which made up 63% of gun deaths that year, homicides 33% of gun
deaths and unintentional discharges , legal interventions or war and undetermined
causes. As for fire arm deaths of children the Clinton campaign relied on figures from
2010. The 2013 CDC figures for children 19 and younger back her up those gun deaths
average 205 per month but if we look only at those age 17 and under the average killed
by month was 105. We won ’ t kno w the number of gun deaths for 2015 for another year
or so and even then we won’t be able to look at the number for a specific time period as
Clinton cited.

A group called the Gun Violence Archive seeks to provide near real - time tracking of gun
incidents t hrough media, government and other sources. For 2015 it counts 11,633 gun
deaths through November 18 but that number doesn’t yet include suicides which the
group says are not reported the same way as other incidents. The group’s executive
director told u s Clinton’s 3,000 figure would likely be right at least based on a monthly
average for the year once suicides are included , and that’s my fact check for this week.
I am Lori Robertson Managing Editor of FactCheck.org.

Margaret Flinter: FactCheck.org is c ommitted to factual accuracy from the country's
major political players and is a project of the Annenberg Public Policy Center at the
University of Pennsylvania. If you have a fact, that you would like checked, email us at
www.chcradio.com . We will have FactCheck.org's Lori Robertson check it out for you
here on Conversations on Health C are .

(Music)

Margaret Flinter: Each week Conversations highlights a bright idea about how to make
wellness a part of our communit ies and everyday lives. Right now there are about 3.5

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million people living in refugee camps around the world whether displaced by wars or
natural disasters the plight of these people is often the same living in squalid conditions
intensities that provide little protection from harsh elements. The IKEA Foundation has
taken the parent company’s widely successful Do It Yourself approach to home
furnishings and applied it to the problem of inadequate housing for displaced refugees.
They have created a Do It Yourself dwelling that can be shipped and assembled
anywhere.

Jonathan Spampinato : So first and foremost there is the very well - known flat pack
approach that IKEA has pioneered , secondly the materials in the product itself , so it's a
shelter it's not a tent.

Margaret Flinter: Jonathan Spampinato is the H ead of Communication s and Strategic
Planning at the IKEA Foundation . T hey are working closely with United Nations
o rganization s working on the ground.

Jonathan Spampinato: W e extended that to also include funding for an innovation unit
within the UN HC R so they could think more long term so providing that funding allowed
them to start the refugee housing shelter looking at how to design a better shelter.

Margaret Flinter: A nd these IKEA structures have some unique properties that can
make the experience more bearable.

Jonathan Spampinato: The walls and the roofs are made out of a new fancy version of
basically a plastic material that is much more durable but very , very ligh t weight and still
it's insulated.

Margaret Flinter: The IKEA Foundation currently has prototypes and true to IKEA the
price point is going to come in under a $1,000 per structure, a deliverable, affordable,
Do It Yourself dwelling that can provide some s ense of dignity, privacy and protection
for families who are struggling as refugees, now that’s a bright idea.

(Music)

Margaret Flinter: This is Conversations on Health C are , I am Margaret Flinter.

Mark Masselli: And I am Mark Masselli, peace and health.

Conversations on Health C are broadcast from the campus of WESU at Wesleyan
University, streaming live at www.wesufm.org and brought to you by the Community
Health Center.