So, we thought we would convene this discussion today because of the specific
challenge that MRD and XDR in TB present
both to global TB control and obviously especially in
countries with HIV prevalence.
The threat of drug-resistant TB to TB control is very serious and needs
urgent action and urgent measures.
But MDR and XDR TB also present a significant challenge to
human rights and the individual liberties.
And so today we'd like to discuss critical questions about the appropriate
balance between civil rights,
individual rights, and liberties, and public health.
So here we are with 490,000 new cases of MDR. Of
drug-resistant TB worldwide every year and with the prevalence that's estimated to
be at least three times that much worldwide.
Of these cases, of these 490,000 new cases of
drug-resistant TB every year, the proportion of XDR TB cases is
not known, but in some, by some estimations it may be seven percent or may
be higher.
And as you know of course both MDR and XDR TB are very hard to treat,
XDR TB more so, and in the case of XDR TB we have very high
mortality rates in cases where people are also infected with HIV. And so in
some countries we find that governments are implementing measures such as
routine and prolonged detentions for the duration of the treatment of
drug-resistant TB,
and in South Africa in particular we have cases of incarcerations behind
barbed wire
of drug-resistant patients.
In some cases with no treatment being offered to these individuals. And many
of these setting there's no proper infection control, and health workers are
also at serious danger of infection. So clearly drug-resistant TB is changing
the landscape for human rights in the context of the public health response
and we need to figure out what we're going to do
to deal with this in a way that balances both human rights and public health.
In the last year we've had stories of very striking cases coming out of
South Africa in particular, of
drug-resistant TB patients that have made the news. And one of such a case
this year was the case of Mr. Sibanda,
a man from Zimbabwe who was living in Botswana with his family
and who was diagnosed with multiple drug-resistant TB. He was then
incarcerated, arrested and incarcerated, and then he was,
he faced deportation with his family back to Zimbabwe. So that's when
the case became known to the public. --The patient is being painted as the criminal
when in fact those who are doing this, who are
implementing these measures aren't taking sufficient steps to ensure the infection
control that they state as being the primary objective
for such harsh measures. So this man was in prison, the guards didn't have masks to
protect them. He obviously wasn't wearing a mask either. And he wasn't being given access to
treatment, although at this stage he'd make it clear that as he was very sick he was
willing to go back on treatment.
At this point the Botswana Network on Ethics, Law and HIV/IADS,
we worked for them to put together a court case and
urgent action to grant him access to treatment.
This was granted, and following that his appeal for deportation was going to be
heard. But before this appeal could be heard, Mr. Sibanda made the decision
to withdraw it,
because of the socioeconomic challenges that he was going to be facing
during the period of isolation that he would be compelled
to undergo in order to receive the DR TB treatment.
He was going to have to be in isolation for the full duration of
treatment,
because he was perceived to be a risk for Nana Tierrans,
given his previous treatment interruption,
so it wasn't about him,
you know, being kept in hospital to prevent the spread infection, but being kept in
hospital for the full 24 months of treatment because he hadn't adhered
in the past without really addressing and getting to the heart of the reasons why he
hadn't adhered. He had a family in Botswana whom he wouldn't have been able to support,
so he made the decision that he'd rather go back to Zimbabwe, travel with them, be amongst family
and relatives, and probably not be able to access the treatment that he needed,
as opposed to
saying in Botswana and receiving treatment and watching his family
suffer because they didn't have the socioeconomic support that they needed.
Which is another
major area of concern that we've also seen in South Africa, where patients are kept
in isolation
for long periods of time to receive treatment, and no measures are being
taken
to ensure socioeconomic support
for themselves and for their families during this time.
Of course this, as we've seen very clearly in Mr. Sibanda's case, is
a major deterrent to seeking care and treatment.
People need to be able to survive, they need to be able to eat, and that's going to always be
the primary concern.
And finally the other thing that comes up quite strikingly from this is accountability,
or the lack thereof. In all of this time when, you know, Mr. Sibanda was receiving
such harsh treatment from the government for not having adhered to the treatment, we
didn't see anything being done about the
conditions for supervise his case for three months, when he was reporting daily
to receive DR TB treatment,
with one of the most important drugs in his regimen being
left out.
If we really, you know if
these sorts of measures are really about urgency and about controlling TB, then we need to see
that urgency being applied in all directions, not just towards the
patient. And I think this is a classic example of the sort of hysteria that you're talking about,
which isn't
really allowing this to have a comprehensive national response.
What's frightening about this is that
the patient is to be kept in isolation,
and there seems to be no other remedy for
what's going to happen to their family, loss of job in the community
etcetera etcetera. That's one piece of it.
The second piece of it is that
this doesn't have to actually happen.
Most MDR TB patients convert in the second month, or the third month. They
become smear negative.
They're not even infectious.
So they don't actually have to be locked up for 18 months or 24
months.
They don't even need to be locked up for the three months. That's the other, that's the third piece
of it. Is we have models
of care
that have been phenomenally successful where patients are treated in the
community
for the entire duration of treatment. --If you're really going to
decide that the most effective approach
is isolation,
you have to think through the consequences of that in terms of the
number of people affected.
You know we started this discussion by talking about 490,000
people.
That's a huge investment, and a huge cost to imagine creating an
isolation
system that would house
that many new people annually
who have MDR TB.
The likelihood of
someone with MDR TB winding up in isolation is not even,
you know, regardless of the patient, it's highly uneven.
And what is it, what are the factors that
lead to someone being put in isolation, whereas someone else isn't? And what are the
policy,
specific policies and requirements that discriminate against people in that
regard?
For example, individuals who are receiving treatment from traditional
practitioners or the private
sector physicians don't end up in isolation.
From a public health perspective, you know, that doesn't make a whole
lot of sense. And from a human rights
perspective that's clearly inequitable.
And, the fact is, your human rights are not
abrogated
if you have a disease like,
like
tuberculosis. There are
ways in which you might have restrictions placed upon you
that are consistent with ensuring protection of
public health and human rights. But it's not one versus the other.
It's really understanding how they relate to each other. --The importance
of respecting,
right, the patients are the first consideration. And that
if, for whatever reason, once access has been provided,
once everything has been put in place by an ideal
good program,
there is a patient that for whatever reason does not understand
after having been counseled, supported,
informed, that he or she is contagious to others with a potentially lethal
disease which is XDR TB
specifically,
but I would actually expand it to the whole concept of tuberculosis when it is,
for instance,
in communities highly affected by HIV,
then only as a final, you know as you mentioned already, only as a final type of step,
then the potential isolation of the patient on a compulsory basis should be
in a way considered.
But that should be done
and that was very clear in the statement according to the Siracusa Principles
that we have mentioned already.
So, that position was quite clear.
So WHO has never supported any position that would be contrary to
this basic human right type of approach, and in a way, patient-centered approach
to TB control.
But the vast majority of African countries have no capacity whatsoever
to
detect cases of MDR TB. They simply don't have central laboratories
that work,
and if they have central laboratories they are not equipped to do the basic
drug susceptibility testing, which is
the basic elementary thing. Not that it's not complex, because with the tools
have today it is relatively complex, it takes several weeks and so on, but this is
what needs to be done for an African continent
that is trying to really face an epidemic like this one.
We have been trying to mobilize as much as possible, now there is the global
laboratory initiative that has been launched,
exactly to do that type of work. To
push countries that have been delaying for decades, right, the establishment of
the laboratories.
Push congress to really think carefully about that, to apply to the
mechanisms that give money
to Africa today, such as the Global Fund
as an example.
Or Unit A which is another example,
to apply to these mechanisms in such a way that the laboratories can be put in
place as a starting point.
So, there is now a tremendous pressure about that,
that is mobilization of money from Global Fund to do things.
Far from sufficient because companies have not yet understood the laboratory issues
in many countries. Not saying all countries, but many companies have not yet understood that
the laboratory issue is a major one and is probably the biggest impediment we
have today for proper and prompt diagnosis of TB and specifically of MDR TB.
Without a good lab, you don't diagnose MDR TB.
MDR TB does not exist unless we have a laboratory. You cannot see it
from a chest X-ray, and obviously you cannot see it just looking at the
sputum. So this is a top priority of everyone in the world. And the response will have
to come in a way from the countries, supported financially with technical
assistance and so on, to place, to put in place
laboratories of this kind. And there are
beautiful examples that this type of thing can be done,
and can be done in less than a year. Simon knows it all, and I see my
friends from Lesotho here,
that has been done in less than a year in a country like Lesotho that started
from almost nothing. If countries are not prepared, or have
no money
to do the job,
in the case of Lesotho it was solved thanks to George Soros that came, and we had even
discussion with George Soros personally on this type of issues, mobilizing two or
three million dollars to help, in that case, Lesotho. That's what WHO
can do.
But don't expect that WHO can go and change the policy of South Africa overnight.
You know, that does not happen, unfortunately with HIV, for a decade.
We've been fortunate to be able to implement MDR TB care in a number of settings.
Back in 1995
and 1996 we started treating, Partners In Health started treating in
the northern corner of Lima,
Peru. And for most of you that know Lima,
it's a really really poor setting.
Very little infrastructure but there are clinics, there
are X-ray facilities.
But basically people went house-to-house and treated patients. There
were not a lot, there was not a lot of hospital back up.
The cure rates initially where about 80 percent. Now that it's nationwide
in Peru it's between 65 and 70 percent.
People were not incarcerated.
People were enrolled in the program,
they were treated in the community. It actually required training community
health workers
and training them in a very sophisticated way so that they could
deliver, so they could basically be an extension of the clinic in the community,
be referral arm.
And,
it seemed to work. Nobody had to, we didn't have to resort to these last
resorts. Now there's always a handful of patients, there's two or three
or 10 or 20, I think Tim Holtz was telling me at lunch that
in the United States there's 20 or 15 patients
that require incarceration
for short periods because they refuse to take their care. But it's a handful. If you
provide care, people take the care generally. And I think if you overcome the
structure, the structural barriers to care, whether it be
transport,
acute malnutrition etcetera, you can do it.
At first everyone told us, oh my god this is a boutique project, you're doing
it in Peru, Partners In Health, Paul Farmer, you know you guys are driven,
nobody else can do this, bladebla. Fine.
Yeah that's often what I hear, is it scalable, maybe it's the Cadillac
model, you know. --Right. Then we did in Russia.
And,
it happened in Russia, Paul was not there very much. It involved Russian staff, Russian
people, Russian doctors,
Russian buildings, Russian buses,
everything. And it worked. It's not perfect, it's better than most other
regions of Russia.
But it works
It's happened in Lesotho as you mentioned.
Again, a country with very little infrastructure.
A program that is run by
all African staff,
mostly in-country staff,
one consultant from Boston that goes back and forth for
about two weeks every, you know,
two months.
An external laboratory consultant,
and it works. I'm seeing here Doctor Rafael in the crowd. I just was in Azerbaijan,
they have a prison system
where they are treating MDR TB in the prison. It's like a model for human
rights. They're giving the patients chocolates every day.
I mean, they have grounds to walk in with
trees and they have negative pressure rooms.
So I think that if you want to do it, as Mario says, if you want to do it and you
put the resources to it, and you have a political commitment to
do it,
you can do it. --I wanted to add though that even in
context where we have Pepfar,
and we have resources,
we still don't always have
government commitment and political will, and a recognition that, you know, HIV
causes AIDS in certain places.
And so a critical component to add to that
I think it is the work that ARASA is doing and that Paul is doing,
and you know, groups like Human Rights Watch, to sort of keep pressure on
governments
to consider not just delivery of care but
the respect for human rights and how,
you know, there has to be accountability for the programs that are put in place.
The fact is the countries themselves are also failing to take these very possible actions
to address this epidemic.
And we do need that sort of advocacy. But something I think that we also need from
people who are
making these policies and these guidelines, and who are engaging with our
governments
you know, at high-level meetings
to discuss these sorts of things to apparently create awareness on these
recommendations,
is to start creating that link between what you're doing,
and what we're doing. --If you look at the history of the HIV movement, the activists
were ahead of
every major initiative and innovating and prevention and innovating
and treatment,
treatment literacy.
You know all of these ways in which,
you know, the rest of us have played catch-up to try and
adapt these approaches and really move them forward. And for the types of
populations we're talking about, and TB, and for what is needed and the scale of
what is needed, there's no way that this can be done without that kind of
activism.
Thank you, I think this conversation highlighted the fact that
it is possible to balance human rights and public health,
and in particular that we need to make an urgent effort
to communicate the value of community-based health care models in
drug-resistant TB care. We need to make the human rights argument, we need to
make the public health arguments, we may need to make the cost-effectiveness
arguments
much more vigorously than we have. And we also need as donors in particular,
I take this lesson that we need to continue to support grassroots activism
very strongly, but also keep encouraging and pushing the political
will to develop at all levels, bearing in mind the different strategies
that are needed for each context.
So lots of work to do, but at least we have some solutions going forward that
will respect human rights and advance public health.
Thank you very much.