[afro-nets] Poor People's Diseases: Do we have the medicines?

[Claudio Schuftan <claudio@hcmc.netnam.vn>]

Poor People's Diseases: Do we have the medicines?
-------------------------------------------------

Quite excellent.

Claudio Schuftan
mailto:claudio@hcmc.netnam.vn

--
NY Times - March 29, 2006
Talking Points

The Scandal of 'Poor People's Diseases'
By TINA ROSENBERG

It's hard to imagine how a Rwandan woman with AIDS might be con-
sidered lucky, but in a way, she is. Effective drugs exist to
treat her disease, and their price has dropped by more than 98
percent in the last six years. Research speeds ahead on treat-
ments and vaccines. Although much more needs to be done, the
world takes AIDS seriously: rich countries provide money, drug
companies have lowered their prices and accepted generic compe-
tition, and poor countries like Rwanda are scrambling to provide
free treatment to all who need it. None of this is true for peo-
ple who suffer from malaria, tuberculosis, or a host of other
diseases that citizens of rich countries haven't even heard of -
like kala azar, sleeping sickness and Chagas disease. Even chil-
dren with AIDS are out of luck compared to their parents.

All these diseases have been abandoned in some important way.
For some, no good treatments exist and there is little attempt
to invent them. For others, effective drugs exist, but aren't
being made. Or those drugs are so expensive that poor people and
poor countries have no hope of buying them. Most of these dis-
eases are easily preventable and completely curable. Saving the
lives of their sufferers is much cheaper and easier than treat-
ing AIDS. Yet millions of people die of them. Why the differ-
ence?

As fatal illnesses go, AIDS is the best one for a poor person to
catch because rich people get it, too. The other diseases might
as well hang out a sign: "Poor People Only." They offer re-
searchers no profitable market. They have little political con-
stituency. There is no well-connected group of sufferers who
stage protests and lobby pharmaceutical companies and Congress
to develop better medicines or make existing ones more avail-
able. The response to disease is political: the illnesses of in-
visible people usually stay invisible.

Five years ago, that would have been the end of the story. To-
day, however, for the best known of these diseases - malaria and
tuberculosis - the bleak outlook is starting to change. They are
slowly beginning to get the attention, money and research mer-
ited by the world's top killers.

People with AIDS all over the world are fortunate to have fellow
sufferers in America and Europe. They are even more fortunate
that many are middle-class gay men. These men have lots of edu-
cation, leisure time and income (and usually no kids to spend it
on). They are predominantly urban, well-connected and ultra-
sophisticated. Their buying power provided pharmaceutical compa-
nies with a lucrative market for AIDS drugs. And they lobby.
Groups such as ACT UP, which began in the 1980's fighting for
the rights of their own members, are now savvy advocates for
that woman in rural Rwanda. In poor countries as well, it helps
that AIDS strikes all social classes. Brazil would never have
become the first poor country to guarantee free AIDS treatment
to all who need it without the activism of its many homosexual
organizations. For every AIDS victim, though, there are many
more suffering from diseases that lack this kind of constitu-
ency. Today, contracting a serious disease that affects only
poor people is the worst luck of all.

I. How a Beauty Regime Salvaged a Cure for Sleeping Sickness

The story of sleeping sickness is a scandalous illustration of
the politics of neglected diseases - and of how much wealthy
people drive the global medical market. After malaria, sleeping
sickness is the most deadly parasitic disease. It is endemic in
36 African countries and is always fatal if it is not treated.
The cure used in most places is melarsoprol - an arsenic-based
drug so toxic that it collapses each vein into which it is in-
jected and kills between two and eight percent of those who take
it. There is another cure, eflornithine, so effective that it is
called the "resurrection drug" - it makes people in comas get up
and walk.

Eflornithine is an old anticancer drug that turned out to be not
very effective against cancer. In the mid-1990's, the company
that made the drug stopped making it. The fact that it was ex-
traordinarily effective at treating sleeping sickness didn't
matter, because victims of that disease had little money to pay
for it. After it stopped production, the company, which is now
known as Sanofi-Aventis, licensed the drug to the World Health
Organization, which together with the medical charity Doctors
Without Borders, searched for another manufacturer. But by 2000,
the existing stocks of eflornithine were dwindling and no other
manufacturer was interested.It looked as though the miracle cure
would disappear. Then lightening struck. Eflornithine reappeared
in a six-page ad in Cosmopolitan magazine as the active ingredi-
ent in the Bristol- Myers Squibb product, Vaniqa, a new cream
that impedes the growth of women's facial hair. Doctors Without
Borders, which had just won the Nobel Peace Prize and was
launching an initiative to find cures for neglected diseases,
seized the opportunity to launch a publicity campaign. Christi-
ane Amanpour went to southern Sudan to report on eflornithine
for "60 Minutes."

The predecessor to Sanofi-Aventis, which still controlled the
rights to the drug, eventually agreed to donate a five-year sup-
ply, plus money for research, surveillance and training of
health care workers, in a package totaling $25 million. The do-
nation runs out this year, but there is a good chance it will be
renewed. A Bristol-Myers Squibb spokesman inadvertently summed
up the plight of sleeping sickness in 2001: "Before Vaniqa came
on the scene, there was no reason to make eflornithine at all.
Now there's a reason." The market agrees with him. Saving Ameri-
can complexions is a reason. Saving African lives, apparently,
is not.

II. Why the Youngest AIDS Victims Suffer Most

AIDS in adults is a global focus of concern. AIDS in children,
however, has been ignored.

Last year, 570,000 children died of the disease in poor coun-
tries, and 700,000 children became infected with H.I.V. Children
should not be getting H.I.V. in the first place. Most of them
acquire the virus in the womb, at birth or through breastfeed-
ing. Infection is easily preventable with a drug that costs
about a dollar per treatment. In many countries, the drug's pro-
ducer, Boehringer-Ingelheim, provides it for free. It should be
used everywhere in the world. But it is not. When children do
become infected with H.I.V., there should be a good antiretrovi-
ral treatment for them, as there is with adults. But there is-
n't. Only about 40,000 children worldwide receive lifesaving
antiretroviral drugs to combat AIDS. Children's antiretrovirals
are expensive. Even in generic form, they cost three or four
times the price of adult drugs. The syrups for young children
taste terrible. The cheapest option for older children is to
take the generic adult pills, broken by a caregiver into halves
or thirds. But this poses a risk of underdosing or overdosing,
as a half a pill doesn't necessary contain half its active in-
gredient.

Since most children with AIDS got the disease from their moth-
ers, most sick kids are being raised by a grandmother or raising
themselves. This makes having child-friendly medications even
more crucial. One of the most important reasons the AIDS treat-
ment revolution has bypassed kids is that pediatric AIDS is now
almost exclusively a third-world disease. Virtually all pregnant
women in Europe and North America get AIDS tests. Those who are
H.I.V.-positive are either given antiretroviral therapy or a
drug to cut mother-to-child transmission of the virus. In 1990,
321 infants were born with H.I.V. in New York City. In 2003,
only five were. This is wonderful news for wealthy countries.
But it has a deadly side effect: it means there is no more pay-
ing market for pediatric AIDS medicines, and no lobbying by
those whose children have gotten sick. One result is a dearth of
affordable child-friendly drugs. Former President Bill Clinton's
foundation has negotiated cheaper prices for generic pediatric
AIDS medicines from Cipla, an Indian manufacturer, but this only
covers a few drugs.

The disappearance of pediatric AIDS from rich countries harms
African children in more subtle ways as well. AIDS doctors and
nurses in poor nations need clinical training in how to treat
small patients whose doses must change as they grow. But there
are few doctors with experience treating pediatric AIDS - they
come from places that either don't have the problem, or that
don't have the solution. Not much research exists about the
long-term effects of antiretroviral drugs on kids. There has
been little push to improve diagnostic tests or bring down their
price - a serious problem, because the most widely used tests do
not work in children under 18 months old.

III. Why One Million Africans a Year Die of Malaria

Malaria used to be common as far north as Canada and Britain. It
killed Oliver Cromwell. Shakespeare refers to it, as "ague," in
eight of his plays. But today, many Americans don't even realize
it is still around. Malaria is all but invisible despite the
fact that it is one of the world's top killers, with over a mil-
lion victims a year in Africa alone. It is the leading cause of
death for children under five in Africa. Because rural children
don't lobby, malaria is ignored even in Africa. Governments have
come to accept a million child deaths as the natural order of
things.

Malaria's victims suffer from their invisibility. One way is
through lack of money to fight the disease. International or-
ganizations and aid agencies talk a lot about malaria. But they
have not backed their talk with money. The solutions they push
have been things poor people can buy for themselves, because
most donors are unwilling to finance more effective measures.
All over Africa, a main cure for malaria is chloroquine. The
great advantage of chloroquine is that it costs only a few pen-
nies, so even poor African families can buy it. It just has one
small problem - in most places it doesn't work. The parasite has
become resistant to it. There is a new, effective cure, called
artemisinin-based combination therapy. Countries should be
switching to it rapidly, but they are not, because it's much
more expensive - around $1.40 for an adult cure, 40 cents for a
child. That doesn't seem like much to save a life, but it's more
than most malaria-stricken families can afford. That means rich-
country donors would have to pay. Until recently, they haven't.

Now the United Nations' Global Fund to Fight AIDS, Tuberculosis
and Malaria is starting to help countries switch to a malaria
cure that actually works. Wealthy nations are also eager to help
prevent the spread of malaria - as long as it doesn't cost much.
The hot prevention tool today is an insecticide-treated net to
hang over a bed. These bed nets are very effective, if people
can get them. But people can't, because donors don't want to
give them away. Even at the subsidized price of three dollars,
the cost is high enough so that people living on a dollar a day
do not buy them. One survey asked rural Africans what they would
buy if they had the money. A bed net was sixth on the list. The
first three items were a radio, a bicycle and, heartbreakingly,
a plastic bucket.

Bed net sale programs generally do not work. In contrast, the
country of Togo in 2004 gave away bed nets during its national
measles vaccination days. Everyone who brought a child to be in-
oculated got a free bed net, or a voucher for one. Virtually
overnight, Togo acquired an effective form of malaria prevention
for most of its young children. But this is a solution many do-
nors seem unwilling to finance.

The United States, of course, didn't beat malaria with bed nets.
It killed mosquitoes with insecticide - something that African
nations also did with much success half a century ago. Today,
South Africa and Mozambique have drastically reduced malaria
cases with a program to spray the insides of houses with small
amounts of insecticide once or twice a year. Why don't other na-
tions do this? Because it requires government financing, and
that means rich countries have to pay. So far, they remain re-
luctant.

The truth is that many malaria victims would be better off if
America still had the disease. If malaria still existed in Amer-
ica, we would be attacking it with DDT. In fact, we did exactly
that. America sprayed DDT in large quantities on crops and cit-
ies. This was extremely irresponsible and did terrible environ-
mental harm. But now we know that DDT can beat malaria without
environmental damage, if it is used as it is in South Africa,
sprayed in tiny amounts inside houses. DDT, however, is banned
in the United States and Europe. That means that Washington has
not, until the last few months, financed its use anywhere else
and it has blocked the World Health Organization from issuing
recommendations to use DDT. American officials maintained it was
hypocritical to push an insecticide overseas that is banned at
home. Americans are beginning to realize, however, that it is
more hypocritical to deny Africa the ability to use responsibly
the tools we used irresponsibly to beat malaria. Last year,
President Bush announced a new program to fight malaria in Af-
rica that he says will provide an additional $1.2 billion over
the next five years. Such promises have a way of drying up, es-
pecially when they concern programs with little political con-
stituency. But the program is well-conceived. It will give away
bed nets, buy malaria drugs that work and finance indoor spray-
ing. Eight countries in Africa are due to start spraying this
year, and three will use DDT as their primary insecticide.

IV. Tuberculosis, Another Overlooked Killer

To many, tuberculosis is a disease of the past, reminiscent of
Keats, the Bronte sisters, and a time when it was it was a death
sentence all over the world. But it is only the cure that is
outdated.

The current cure for TB involves taking a six- to nine-month
course of four drugs, the newest of which is 40 years old. The
currently used - and not very effective - TB vaccine was in-
vented 80 years ago. The most commonly used diagnostic method is
hit-or-miss, and it doesn't work at all on people with AIDS. Un-
til very recently, there was no research designed to solve any
of these problems. But while the treatment of TB remains mired
in the past, TB is, unfortunately, a disease of the future. Once
thought to be disappearing, it has roared back, propelled by
AIDS. In sub-Saharan Africa, TB cases are rising at six percent
a year. One third of the world lives with the TB bacillus in la-
tent form. When AIDS degrades a person's immune system, it acti-
vates TB, which has now become the number one AIDS-related kil-
ler. In some parts of Africa, 75 percent of people with AIDS
also have TB. And they tend to be the poorest. Sons of presi-
dents get AIDS, too, but they are unlikely to get tuberculosis.
That has helped keep the disease invisible even as the numbers
soar.

Five years ago, however, something happened. With financing from
the Bill and Melinda Gates Foundation, researchers and public
health officials created the TB Alliance. It scours universities
and corporations for compounds - both existing drugs and brand
new ideas - that might have promise against TB. It negotiates
rights to these substances, then raises money to develop and
test them, and to obtain regulatory approval - the things no
drug company is interested in doing. A companion organization is
doing the same for TB vaccines, and another one is taking on TB
diagnostic tests. As a result, a drug pipeline that once held
nothing now has several promising compounds in clinical trials
that might allow a faster, less toxic TB cure.

The story of poor people's diseases has not been a happy one,
but things are finally beginning to look up. From 1975 to 1999,
only 13 new drugs for neglected diseases were invented. Since
2000, however, 63 new compounds have been put into development,
including 18 that are in clinical trials. Most of these new com-
pounds are being managed by groups like the TB Alliance, which
go by the unwieldy name of public-private partnerships. These
groups - including the Medicines for Malaria Venture , the Ma-
laria Vaccine Initiative , and the International AIDS Vaccine
Initiative - are starting to bring real hope to the problem of
third world diseases. One World Health is a nonprofit pharmaceu-
tical company that is trying to find cures for illnesses like
diarrhea and Chagas disease. Its first product, a cure for a
deadly tropical parasite called visceral leishmaniasis, which
infects 500,000 people a year, is about to be submitted to In-
dia's drug regulatory agency for approval. Doctors Without Bor-
ders has its own organization, the Drugs for Neglected Diseases
Initiative. The big pharmaceutical companies are also starting
to pay more attention. Novartis, AstraZeneca and GlaxoSmithKline
have established research labs dedicated to tropical diseases,
and many of the largest drug companies are donating medicines.
Several companies have programs to work on diseases in specific
African countries.

One reason for the surge of interest is AIDS itself. Although
many researchers who work on malaria and TB resent the fact that
AIDS has hogged most of the attention and financing, the disease
has awakened world interest in Africa and poor-country diseases.
The pharmaceutical industry has also learned an important lesson
with AIDS. Its efforts to maintain high prices and keep out
cheap generic drugs - even from poor countries that would not be
able to buy brand name medicines - led to worldwide notoriety,
and even public comparisons with the tobacco companies. The in-
dustry has not reformed. The companies have successfully pushed
Washington to negotiate clauses in free trade deals that will
make it harder for some of the world's most miserable countries
to get generic drugs. But they have begun programs of research
and donations of drugs for neglected diseases in part as a way
to burnish their image.

The AIDS pandemic has also given birth to the United Nations'
Global Fund to Fight AIDS, Tuberculosis and Malaria, which has
become a remarkably efficient ongoing source of money, although
one hobbled by wealthy governments' stinginess. The partnerships
and the pharmaceutical companies can now be assured that someone
with money will buy a new AIDS, TB or malaria drug. They may not
make a profit, but they won't take a loss. The other reason for
the sudden visibility of poor-country diseases is the establish-
ment of the Gates Foundation, which has $5.8 billion in active
global health grants at the moment. There is probably not a sin-
gle major organization working on any kind of vaccine, diagnos-
tic tool, cure or treatment for any poor country disease that
does not get much or most of its financing from the Gates Foun-
dation.

When he began his philanthropy in 1994, Bill Gates was looking
to locate and fix market failures and get a lot of results for
the buck. He certainly has done that. But how many people have
died unnecessarily if one person - albeit one very rich person -
can stimulate so much progress in reversing a planet's worth of
neglect?

Lela Moore contributed research for this article.